Saturday, 8 December 2012

What Keeps You Strong?

I haven't been posting regularly for a while and keep apologising for the lack of activity here.... Im not apologising for anything anymore. Life is a roller coaster and that's that lol.

One of the top ten questions I get from people about my condition, is, "How do you cope with that?" until recently I have found this question near on impossible to answer. What do you mean? I'm not coping, I'm not dealing with it and I just want a way out.

I never understood the question... I just wake up everyday and put one foot in front of the other...sometimes I walk and sometimes I fall. That's just the way it is. I have no choice in the matter really. So COPING never really entered my head.

However, the last couple of months have been a turning point for me. My last clinic appointment left me in tears and all kinds of emotional torment. I was told that I would probably be on TPN for the rest of my life... wowzer, I had never dared to think like that before. Nor do I ever want to think that way again!

I realised that the one thing that holds me together and gets me through the toughest off times is HOPE. Without that, there is only darkness and pain. I have every right to my little piece of hope and no-one should ever take that away. So I'm throwing those words in my mental dustbin and washing away the negative energy. Making someone feel hopeless is not conducive with healing!

It is well documented that health is directly effected by our biological, phycological and social circumstances. So what good can be gained from telling someone with a long term illness that things will never improve? Yes, patients need to know the facts... but in a condition that is still in the infancy of research... How the hell does ANYONE know that? It's not fact it's opinion, based on a lack of knowledge of the work being done by others.

The strength to fight for your life every day comes from a place most people never have to go. It is impossible to answer, "how do you cope?" but what keeps me strong is the hope that one day... things will change!


Sunday, 4 November 2012

G.I.F.T: Do you write poems?

G.I.F.T: Do you write poems?: Hi everyone! After receiving great feedback on facebook about poems, I thought it would be a great idea to get everyone to send in their ...

Thursday, 1 November 2012

Never Ever Give Up!

To all my friends and family,

I want to thank you for being there for me. For keeping my spirits up in the hardest of times and for believing in me from the start. 

Our relationships have been tested to the very extremes yet we still stand side by side in battle, waiting for times to change. I promise you faithfully that one day, we will win this fight..... how can I be so sure? Because with friends and family to help you through, you don't need a miracle, you already have one!

I thank you all from the bottom of my heart for sticking it out with me and never loosing hope x

Never Ever Give Up!
NEGU x



Dear Gastroparesis,

Screw You!

Nat x

Friday, 26 October 2012

One step forward....

I have not been writing much, in fact I haven't been doing much of anything lately... you know when I start writing poems...its not going well lol. I have been having a mini war with myself over medication and just generally sulking about the whole situation!

At my last consultation we decided to remove my nj tube after starting on TPN in the hope that I wouldn't need them now that I'm not using my digestive system for feeding. It didn't take long to realise that I really needed some of those meds but by then it was too late and the tube was gone. So I have spent weeks trying to cope, simply because I didn't want the dreaded tube back! Really all I needed to do was make a phone call or send an email but I wasn't giving in and wanted to make it work. That was pretty dumb and I should have known better but I never learn. I do everything the hard way so why would this be any different lol.

So, of course by taking that approach, I just made everything worse for myself and ended up in a pickle! I got run down, tired and ended up with an infection in my line site. So after a week on oral antibiotics, added to the other meds I'm trying to keep down and all you get is a sore throat from throwing it all back out again.

Finally I had to admit that this isn't working and I need some help. It took me a long time to finally speak to one of my drs but they both got back to me eventually and agreed that I should get the NJ back while they decide about the long term.

Now that it's being dealt with I just wish I had tackled it sooner and I could have got things together by now instead of sitting here with my sick bowl and an itchy boob!


Wednesday, 17 October 2012

GIFT

We have recently launched our new blog!

If you haven't seen it yet take a look at www.giftukblog.blogspot.com and see what we have been up to!

We are just starting out so don't have a great deal of funding but soon hope to get our website off the ground to provide a more interactive platform. In the mean time, I hope you like it....show your support and subscribe, tweet, 'like' and share our page!

You can also visit our support group at www.facebook.com/groups/GIFTuk for patient led advice and support.


Thursday, 20 September 2012

Life As We Know It


You sit and you wait
the clock is ticking
What's the deal…the doctor is late!

You think to yourself
its not so bad
in fact he really thinks I'm mad!

You sit and you wait
now feeling too ill
when he makes the suggestion
lets try one more pill.

You nod your head 
and go with the flow
after all
he's the one in the know.

You sit and you wait
getting thinner and thinner
come on doc
I just want some dinner.

Your life soon revolves 
around constant drip rates
and you just can't remember the last time you ate.

Time is a healer
but you're not so sure
after all they say
there is no cure.

So you learn to live
with the hand you are dealt
and hide from the world
the way that blow felt.


Tuesday, 18 September 2012

The war zone!

I see you there
as you stand and stare,
my body is broken, i'll lay it out bare.

Look into my eyes,
they have seen more than many.
Hopes and dreams
I cant have any.

I see you there
as you stand and stare,
my spirit is broken, i'll lay it out bare.

Look into my eyes,
I'm deep down inside,
here in my war zone, theres no place to hide.

I see you there as you stand and stare,
Don't pity me, dont even dare!
Look behind my eyes
Can't you see I'm still there.

I fight the good fight
all day and all night
to awaken the spirit and live for the right
the right to be seen from the shadows of lights.

Look beyond the battle
look beyond the war

Life is worth living of that I am sure.

Tuesday, 11 September 2012

Life on TPN

I realise I was a bit vague in my last post but this entry deserves a little time to write without distraction.

I commenced TPN (intraveous feeding) on the 12th June and since then I have been testing my feet in this new world. In just under 3 months, I have gained back 11kg and for the first time since my journey started over two and a half years ago,  I'm a stable healthy weight.

Initially, when TPN was mentioned as the next step for me... I panicked! Like anyone would I guess. I saw it as a sign of things getting worse and found it hard to stay positive during that time. Then, things got so bad I stopped looking at it as "as sign of getting worse"... there was no worse anymore... I felt so ill I didn't care what any of it meant as long as it kept me alive. I realised that this was the only thing that would stop me from starving! (Yes I know thats the purpose of it lol. It just took me a while to realise that!)

Accepting it was only half the battle though. First we needed to find a parental nutrition team to take me on! In a perfect world...it shouldn't have been a problem. Your consultant decides you need treatment, you get it right?...life is not perfect and that's not how it works at all. My GI had a very hard job getting someone to take me on. My impression was, that they all wanted to do their own adjustments to my treatment plan before heading off down the TPN route. Theres nothing wrong with that as such... I totally understand that they wanted to make sure for themselves that this was the best option...after all, its a pretty big step. They don't know me as a patient... I'm just a piece of paper to them at this point and on paper I'm guessing that most physicians see gastroparesis as a mild complaint... surely there is another way... and so it goes on....for another couple of months!

Then... I get an email from my consultant... the best email I could have wished for... I've found you a Dr and she gets it! WOW at last we have made progress. He said she would be in touch with me once he had sent over all my notes etc.... I didn't have to wait that long, she rang me the next day to arrange admission....he was right, she got it lol.

I spent the next 4 weeks in hospital while they placed my Hickman line, a new NJ tube for meds and got my prescription stable. By the time I was ready to come home I was already feeling stronger than I had in a very long time.

Over the last 2 months I have been learning to live again! I have a strict regime to follow and I still can't eat or drink but now I can live my life without these things and live to tell the tale! I hook up to my drip stand at 8pm every day and by 8am I can remove the attachments and forget about it until the evening comes round again. To many people, being attached to a drip sounds pretty limiting. In reality, it gives me more freedom than I've had in a very long time. Since october 2011 I had been attached to a jejunal feed pump for 24hrs a day and in constant pain as a result. Towards the end I was getting as little as 360kcal a day and having to go to an IV clinic twice a week because I was permanently dehydrated. NOW I get 1600kcal in 2 litres of fluid every day... no more IV clinic, no more needles, no more starving and most importantly... I fit into my wardrobe again!!!

It does bring it's own set of little challenges... like my living room looking like a hospital, having a curfew, and going away brings a whole host of headaches. However, when I came home from hospital, I made a decision that I would not allow anything to stop me from achieving my goals. I feel like I've been given a chance to make a difference and that's exactly what I intend to do!

My first adventure away was a big learning curve in itself! We have been so disjointed as a family throughout this whole journey that we decided to take the children away for an activity weekend. We wanted to build some bridges and get us all working as a team again. We went to an outdoor activity centre where they are used to catering for people with medical needs. The point being that we wouldn't have to worry about having the right facilities to store my TPN because they provided everything needed and they would find activities suitable for all of us. We thought this would be the safest option since it was my first trip away and I don't exactly travel light anymore!

We arrived on saturday and were due to come home on monday. On sunday, we did archery followed by canoeing in the afternoon... doesn't sound like the best idea for someone with a hickman line but the children really wanted to do it and they had a rig of two canoes bolted together so they couldn't capsize...problem solved! The children were smiling from ear to ear the whole time!

Then... we had a crisis, we got back to the centre and I checked the fridge...oh ooohh, it was warm! There was no way I could use the bag because I couldn't be certain it was going to be safe, it had been packed in freezer blocks for the journey and then left in a warm fridge for well over 24hrs... my theory, if in doubt leave it out! I hadn't even thought to take any back-up IV fluids so we were left with a little dilemma! The nearest A&E was a 45 minute drive away and I really didn't fancy dragging the kids to yet another hospital to sort it out, it was late and we would have been out all night. By the time we drove there and back we could be home and sorted never mind the wait in A&E. So after a lot of debating we decided that the safest option would be to cut the trip short and get home. Once again I felt the guilt... one emotion that never leaves you, no matter how long you have been ill.

You can't keep beating yourself up over these things though. It's not what you do that counts, its how you deal with it that matters! So we took the positives, made some memories, overcame our first hurdle and achieved something that was simply not possible a few short months ago. We also decided that we would not let it stop us, all we need is practice so we will just have to do it all again until we get it right!... Our next adventure? Its ambitious considering... HONG KONG here we come! No, I'm not bonkers, my brother is moving there for a new job so that's my new goal... you know I like a challenge!

My most recent consultation was a a far cry from the last one! It felt so good to be able to walk in with a smile instead of a grimace and genuinely say... I feel MUCH better! He was really pleased with how things are going and gave me another piece of good news. I could stop taking most of my medication because I'm not using my digestive tract anymore. This in turn meant that I could remove my NJ tube too!!!! I was so excited at the thought of being free from the face jewellery that I probably didn't think it all through properly at the time, all I heard was tube free...oh yeah! My goal for my next appointment... go out and be naughty for a while! Now that's my kind of target hee hee.

Like I said, I didn't entirely think this whole medication thing through... I stopped all my meds straight away as none of them needed weaning. I was fine the first day. The second day was harder... and then I really didn't feel too good! So I had to jiggle things round a little to figure out which ones I needed and which ones I can live without. Then came the realisation that I don't have a direct route anymore, so I'm running the daily gauntlet... will it stay put or won't it! I've been in touch with my GP to see if they do them in an orodispersible preparation but they don't. So we changed a higher dose twice a day instead of the low dose three times a day. It's not ideal and its still hit and miss whether I get an effective dose or not but that's the only thing we can try. As a result, I am quite up and down with my pain levels again and I really don't look forward to those days where I turn into a moron and actually believe that I can get away with eating that piece of forbidden cake!

This last week has been a reminder of just how awful the situation is. I have had a serious flare in symptoms which has led to a succession of sleepless nights. To add to the aggro I have been getting persistent cramp in my legs and feet. To begin with I just thought it was just one of those things, I have flat feet and have been more mobile recently. However it got worse as the days went on and I now spend every night doing the cramp dance round my dripstand while trying not to get tangled!... Hubby is not impressed with my interpretation of pole dancing!

I have been for a blood test today so I hope that explains it and they can sort it out for me! I also saw my gp, he was much more helpful today and actually sat and went through my notes with me (He was way out of date). I explained everything to him, including who is involved in my care and what their roles are. So now we are both working on the same page at last!

We decided that my recent flare in symptoms could be bacterial overgrowth again (SIBO). For once he didn't question me and handed me a script for some Rifaxamine (antibiotic). He also agreed that it looks like something isn't quite right with the TPN, I had seen him last week and he could see the difference in my face. I was in a lot of pain and struggling not to be sick!

The last few days have been a nightmare but hopefully the storm will pass and I will be able to plan some naughtiness soon!


I will update you once I know whats happening.




Wednesday, 15 August 2012

Projects!

I want to apologise to all my regular readers for not updating my blog for so long!

Im going to write a full run down soon and explain everything in detail, but I can tell you.....I'm finally at a HEALTHY weight! I'm not dehydrated all the time and I no longer feel that I'm just wasting away!   I'm still learning to live within the limitations of the way things are and sometimes find it hard to pace myself and not overdo it! My mind is strong but the body has other ideas lol.

I have been working really hard on getting my new charity off the ground so blogging has had to take a back seat while I focus on this. I have called it GIFT... Gastroparesis & Intestinal Failure Trust. It has been my goal for so long, and now it is finally coming together! There is a full run down of our objectives on our facebook page.

You can find the official charity page at: GIFTuk Official page if anyone would like to get involved and make a difference please email me at giftukawareness@gmail.com and let me know how you can help! We really need people to get behind us and spread the word! you can also join the support group at: GIFTuk Support Group

I will post soon with a full update, keep smiling people, together we can make a difference!

Monday, 9 July 2012

Progress!

Hi guys!

Sorry I haven't been updating as regularly as usual! I'm stuck with the iPad while I'm in hospital and it's not so easy to post on here!

I'm almost ready to come home and my discharge is arranged for Thursday (12th). I had three training sessions for self administration of the TPN. One for connecting, one for disconnecting and one for dressing changes. It was all pretty straight forward because I have my nurse training to fall back on, so after showing him that I could do it safely we sat and chatted about festivals and camper vans lol. I have been setting everything up myself since week one so there are no really concerns about that!

I had my NJ tube replaced on the Monday, following my last post but it did not go very well. I spoke to the clinician who was placing it prior to them starting and explained that I was more than used to the procedure after having several already. I also told him that 4mg of medazolam is what they usually use and that works for me. I got the arrogant response...but you haven't had any food for a long time and I don't think you need that much so we will try 2mg instead....why does he think I had the other tubes placed???? I got the impression he thought I was a drug seeker or something! So stupidly I backed down and agreed to let him do it his way. BIG mistake! It was very traumatic and he ended up having to top up all the way through, so in the end I had 5mg instead....yeah dufus!....listen to your patients instead of accusing them! I was very cross afterwards because the whole thing was totally unnecessary and it was VERY unpleasant for me! I could rant about this subject for ever and a day but you get the gist so I'll shut up lol.

So, no I have my Hickman line for the TPN and the funky face jewellery for my medication. Not ideal but it does solve a problem and I'm used to tubes up my nose so I'm past caring really! My new Gastro consultant came to see me last week for the first time and we had a chat about my history and plans for the future. Sh e said that she was going to work with my GI in Durham to try and establish some sort of plan for the future. She said that she would like to place another surgical jej tube so I don't have the visible NJ tube but she wouldn't do anything without speaking to my GI first. She was very nice but her visit di upset me. She explained to me how little research there is into Gastroparesis and said that the long term prognosis for patients like me is not good. That one sentence rolled around in my mind for days and I had a succession of very tearful days after our conversation.
Whenever you have these conversations with doctors you kind of go along with the conversation.not really taking it all in and then after they have gone you realise that you have lots of questions and choices that you didn't voice at the time. After thinking things over for a while I decided that I'm sick of being poked and prodded and, sliced and diced and I really don't want another surgical jej tube! I just need a good long rest from all this...so what if people can see my tube, it's not so invasive and I'm used to people staring and whispering so why go through another surgery just to get a tube that does exactly the same as the one I have now???? If I was feeding through it I might see the reasoning but it's only for my meds so why rock the boat and take the risks??? I would have preferred a double lumen line for my medication so I didn't need a jej tube at all but that was to simple...again, I could wittier on for hours, patient choice never seems to be an option these days, after all Dr knows best eh!

I still look like I'm six months pregnant, they increased my Movicol to a whole 3 sachets a day...wooo thanks for that! They offered me lactulose and docusate but aaron, they do nothing! Luckily the docs change round every 2 weeks here and this morning I finally got a sensible one! He immediately said that I could have some picolax or clear prep because they need an ACURATE weight before I go home! It's just common sense stuff however, common sense isn't actually that common these days! Hopefully this will work and I might start feeling a little more comfortable.

Today I have been out with my mum for a few hours and had my make-up done at Harvey Nicols which was a lovely treat and it cheered us both up! Photo to follow when I get home...I need my laptop so much!!!!

I would like to say a MASSIVE Thankyou to everyone who has visited me! It's a surreal experience meeting people I've never spoken to face to face but we know each other inside out...it's been great to meet you all at last!

Love and hugs and big big smiles as always xxx

Friday, 22 June 2012

Disaster magnet!

Time to finish that post I started! Sorry I've left it so long I'm sure you all understand though ; )

I left off last time having just met the team who are caring for me and arrangements were being made for me to get my Hickman line so they could start my TPN. As mentioned before, they agreed to arrange for me to have sedation for my line insertion because local anaesthetic doesn't work for me (because of my EDS). They initially thought I would have to wait a while and they had planned to place a temporary line while I waited. As per usual the plan changed again and they managed to get me a space on a list at another hospital in Leeds, (Leeds general infirmary) meaning I didn't need the temporary line after all! My NJ tube had blocked the night before so it was perfect timing considering I have no other route for meds etc.

Wednesday morning came round and everything went as planned. The patient transport arrived on time to take me over there and they were expecting me when I got there, which is always good! When I got into the prep room before the procedure the clinician came in to sort out the final bits of paperwork before taking me in. As he was explaining the procedure it dawned on me that he was planning to use a local anaesthetic for the procedure.....oh boy! I soon spoke up and asked if he knew about my problems with locals...I was met by a blank expression....oh oh! It turns out that they had requested for me to have sedation not realising that this wasn't appropriate considering that it just makes you relax...it doesn't mean that you won't feel pain in the event of the local not working. The clinician totally blew his lid and told me to tell the bleeping bleeper who organised it that he was a bleeping bleep and if they expected me to cope with it under sedation then they should come and have it done like that themselves and see how it feels lol. He then explained that they didn't have an anaesthetist available to give me a general anaesthetic and he wouldnt do it without one....oh dear lord what a nightmare! I explained the whole situation surrounding my need for the line in the first place and he got my notes out to have a look....hmmm it says in your notes that you have a complex medical history but they have only supplied me with 5 pages of notes!!! It wasn't looking good! Luckily, the theatre nurse who I had been chatting to went in search of an anaesthetist for me....and returned 10 minutes later with good news! She had managed to collar an anaesthetist between cases and practically shoved her into the room lol. So, after all of that I finally did get my line, under a general anaesthetic and I can safely say I didn't feel a thing lol. Someone must have been watching over me x

So, I'm all set up and the TPN is running at long last! Yay....fooooooooood!

However the setbacks keep on coming and it hasn't been as plain sailing as expected. I was looking forward to no more needles, no more face tubes and most of all, some reliable nutrition. Unfortunately, they placed a single lumen tube, meaning that they could not administer any medication via the Hickman and I still have to face the daily blood draws but hey, a line is a line and if I get some nutrition that's the main thing!

I was booked in for a new NJ tube this morning as a means for administering my meds but this is me remember....it got cancelled! I have no idea when they will be doing it now so I'll just make the most of having my face back for a while!

On the positive side, I aced my first class in TPN training and I had a wonderful surprise visit from a young girl named Hannah and her mum Carol, who I had met through this blog a while ago! We have tried to get together many times before but one of us always fell ill before we actually got together. It was great to finally meet them and put faces to names! I must also say a huge Thankyou for the beautiful pink roses they brought me....all the nurses are jealous!

I didn't expect the road to be easy but despite all the drama I'm happy in my own little way, I know I'll get stronger and I know that I'm safe....that's what counts to me. You could throw anything at me right now but I'd still smile regardless xxxx

Monday, 18 June 2012

Hospital progress update

Well, what a week it has been!

As usual nothing is straight forward and plans have been changed again. Following on from my last rant, I finally made it to hospital on Friday after my mum staged a sit in at my GPs office lol.

We had spoken to my GP on Wednesday and asked him to contact the hospital following the advice of my consultants secretary. He was supposed to ring them and let them know what the situation was with my feed rates etc so they could prioritise my admission. Unfortunately this particular GP still lives in the dark ages, before telephones and emails and decided to post a letter marked URGENT instead....yes really!

By this time I was really at the end of my limit, I hadn't had any feed at all for 10 days and only 240ml of water per day through my NJ tube. I might be used to starvation but everyone has a limit and I reached mine quite some time ago. I really couldnt cope with it anymore and literally felt like I was just going to fade away. So as I said, my mum marched down to the surgery on friday and refused to leave until she had spoken to my own GP, who is much more efficient and understanding. She knows me well enough to know that when I say I need help...I mean it. Thankfully she made some phone calls and I was on my way in by mid afternoon the same day.

Unfortunately, with the weekend almost upon us there were no doctors from my team available....so I get the usual weekend treatment from junior doctors who don't fully understand my situation. By Saturday evening I had been in for 24 hrs and they hadn't given me any treatment other than my usual medication....and they even got that wrong 3 times running. So I asked the nurse why I wasn't getting fluids even though I'm getting so little from my NJ. She said that the doctor had checked my bloods and they were ok so I didn't need any. My reply to this? I had just been for my REGULAR Hartmans soloution at the clinic the day before I came in. I might as well have been talking to the wall because they still did nothing about it. Plus they thought my tube was an NG? I'm sorry but even I know that when you get a new patient on the ward.... you read the notes! At least that's how I rolled when I was nursing!!!

Needless to say, when the Gastro team returned this morning they went crackers and I was hooked up to an IV within minutes lol. They were very good and I've now met several members of the PN (parental nutrition) team. I had been worrying about having the line put in for weeks because local anaesthetic doesn't work well for me. Last time I had it...for my jej tube stitches, it was more like a trip to the tattooist for some form of extreme body piercing than a painless clinical procedure. At first he said that there was no way round it because they needed to get a line in straight away and I would just have to try and tolerate it as best I could....so I agreed to give it a go....cringe! THANKFULLY, he came back an hour later to tell me that he had spoken to the clinician who would be doing the procedure and he had refused to do it because it would be too painful.....phew! So the new plan is to put a temporary PICC (peripheral intravenous central catheter) line in so they can start the TPN while I wait for a space on the sedation list for the Hickman line.

I'm hoping that they will place the PICC line tomorrow because I'm STILL not getting any calories other than my 30ml of calogen per day. It's so draining I really can't describe how it feels....it just takes over your whole body and there's no way of getting rid of that feeling until I get some nutrients back on board. I have been getting IV pabrinex (vitamins) which usually makes me feel bright and alert again but this time I don't feel so much benefit from it.

I have so much more to say but I've been typing for too long now and I'm shattered so I'll try and pick up where I left off tomorrow, I need some sleep! xxx








Wednesday, 13 June 2012

RANT

AAAARRRRGGGGG!

This is going to be one big rant, I'm a calm person really I promise ; )

Lots of you already know that I was due to get my Hickman line on Tuesday, so by rights I should be getting some food by now. But remember...this is me, queen of the cock-ups, disaster magnet extrodinaire... or is it just that I'm so laid back that people think "its ok she won't mind"? 
Which ever it is... I DO mind!

As mentioned in my earlier post, I was due to be admitted on Sunday ready to get a hickman line on Tuesday. Unfortunately there wasn't a bed available on Sunday. 
Not to worry, just a quick change of plan....go down to my GPs office to get the MRSA screening done and all will be ready for Tuesday. 
After all, I'm "DEFINATELY DEFINATELY" on the list! 

So I skip my regular IV day which was much needed, to head down to the GP to get the screening done, expecting that it would be ok because I would be getting my fluids on Tuesday after the procedure.

I didn't know where or when to go but they said they would phone...
silence....
several phone calls and a lot of waiting later, don't worry its all in hand and the unit will contact you shortly with a time.
Silence...
I know whats coming...
Actually, even I didn't expect that!..
Nothing, not a peep or a whisper... 
So I presume its off then! 

But what's the plan now then?

Today someone will ring and tell me what the new arrangements are...
Nope....
Several more phone calls later...
I finally get to speak to one of the team....hmmm there are no beds and you have missed the list for this week....the next slot is on Tuesday! 
What? I don't need a bed, stick me in the cupboard for all I care just give me some food!!!!!

The upshot is, they are waiting for a bed, as soon as they get one I'm there....
But I still have to starve for 7 more days because I missed my slot! 
Hey, no rush guys...
I'll do you a deal!....
You starve for the next 7 days with me and see how much you mind!

If you're a really good patient I might throw you a litre of fluid to keep you going!

Apart from that I'm chipper!

Saturday, 9 June 2012

A New Chapter



Where to start?

Well it's been a while since I sat and spent any time writing and as usual lots has been going on. Last time I wrote I had just started taking Pregabalin for pain and Refaximine for bacterial overgrowth which had been recommended by the team at Manchester. I'm now on the full dose of Pregabalin and have finished the course of Refaximine yet I'm still having big issues with pain and feeding.

The IV therapy has been keeping me afloat for the last few weeks which has been helping me manage while I wait for a better long term solution. I have rubbish veins though so it has meant repeated jabs into veins that are already scarred from overuse. They are really good at the unit though and they have been keeping a close eye on me. I wasn't so good when I went last week and they had a Dr up quick sharp to come and see me. To put it politely, I hadn't "been" for 6 weeks straight. I had spoken to my gp about it but their opinion was that I wasn't getting enough feed to cause a build up so not to worry. I don't know why they don't listen to me but hey who am I to know my own body? The Dr I saw on the unit was much more sensible and prescribed me some phosphate enemas to take home. It was really hot that week and I had not been tolerating my feed so he suggested that I switch to water through my pump instead.....if you have read my earlier posts that statement will make  you smile! I only have bags of feed at home and no hydration bags so I followed a good friends recommendation and cheated. I emptied a bag of feed and sterilised it with milton then filled it with cool boiled water from the kettle...probably not in the handbook but like I said, it's been an issue for a while lol.

I have been emailing back and fourth with my consultant over various matters but mainly I wanted to know what was happening about my referral to Newcastle. I don't know quite what the situation was but the plan changed and I'm now under another specialist (yes another new one) in Leeds. I was expecting a long wait to hear back from them though because it usually takes forever for an initial consultation. I was pleasantly surprised when the phone rang on Wednesday and it was my new consultant. She was very nice and I didn't have to explain too much which is always good. She was initially thinking of admitting me for assessment but after discussing the feed rates she decided that it was no good waiting for me to loose any more weight than I already have and that she would try and get me in for a Hickman line (a tube that goes into the artery near the heart) straight away so that I can start TPN straight away.

She called me late on Friday evening to say that I would be going in on Sunday and I would be getting the line put in on Tuesday. She then told me I should expect to be in for about 4 weeks for them to balance the feed and teach me how to look after everything and be safe! While it is a huge relief to know that it's all going ahead and I won't be waiting, I'm also pretty scared. Not so much of living with it, because I'm sure ill get used to that like I did with the jej feeding but having a tube in my chest? Squeemish! I probably didn't do myself any favours but I have nursing in my blood and I like to know everything so I watched Dr Hickman's video of how he places them.....yeah, that wasn't such a good idea!  I would have found it fascinating a couple of years ago, but when you know that's what's gonna happen to you...hmmm. Maybe that's why I'm sat here at 3:30 am talking to you guys!

Anyway all joking aside, I'm positive about the whole thing and I'm sure it will give me some quality of life back that I have been missing for so long so onwards and upwards and I'll catch you all soon xxx







Monday, 14 May 2012

Time for a Catch Up!

Hey everyone,

I haven't forgotten you, I've just been busy trying to get myself back on top! I've had several appointments since I last wrote so I'll try and work through things as best I can. I have a bit of a memory loss issue at the moment so we'll see how it goes ha ha.

I didn't get my NJ tube on the day we were expecting. We went for the initial appointment only to be told that they had no idea about the arrangement that had been organised on my discharge from hospital! So that was a waste of effort!

It wasn't a completely wasted journey because I had my appointment with the pacer nurse in the afternoon but it was a VERY long day. I've had the voltage increased again so its at absolute max now. The rep said that they can still play around with the timings of it for me but I have to admit that I have almost given up on it working at all.

Anyhow, we got an apology for the mix up and I did eventually get my new tube the following week. It was a much better experience this time round, I know my doctors read my blog from time to time and I'm so grateful that he gave me a larger dose of medazolam this time round.... thanks Dr K x As I've mentioned before, I usually have 3mg of medazolam and I remember everything during the procedure and then forget everything for several days after. This time with the 4mg I didn't know anything until the nurse woke me to go home! Yes I'm still forgetting things now but I don't mind, I didn't feel a thing lol.

My new tube is so much more comfortable. Compared to my last one I can barely feel it all! Plus, it's white and not that awful yellow colour that makes you look even more ill! (things like this matter!). I only have one drawback...thinner tube means more blockages. Yup,  hubby has been kept busy trying to clear the tube from blockages. We thought it was a goner this weekend after several attempts with everything recommended and had no joy. We decided to have one last go before making any phone calls and BINGO we got it going again! It is only really an issue because my feed rate is so slow that it solidifies in the tube. Hopefully when I can manage higher rates again this won't happen so much.

I've had several visits to my gp to re-organise my medication and to arrange for my outpatient IV's. I'm controlling my own increases of pregabalin up to 300mg a day but I'm taking it very slowly because it is making me feel very wobbly and somewhat out of it at times. I get episodes of vertigo and my head feels fuzzy all the time so its really limiting my activity. I don't like it but maybe it will pass as I get used to it a bit more.

After using the wheelchair so much in hospital I finally decided to go and get a new one! I got a really light self propel that folds up to actually fit in a car boot lol. It's also a slim fit so it fits my body frame better. It's so much easier for me and anyone helping so I think it was worth it. I've been putting it off for a long time but the way things are now I think it will be a while before I'm fit enough to leave it at home. It will give me the chance to go out more this summer so I'm happy.

I finally got my first lot of IV fluids on Friday evening after a lot of ring around to find out where and when I needed to be going! With it being a 4 hour infusion we didn't leave the hospital till 9:00pm so I was shattered when I got home. They were really efficient at the hospital and seemed to know what the plan was so I trusted them when they told me to ring on Monday to find out when to go back. Of course, when I rang this morning nobody knew anything about it! Five phone calls later I eventually get someone to fill me in. I'll be going twice a week starting tomorrow. I can't even begin to tell you what a relief it is to finally have a regular arrangement for my fluids. I have been dehydrated for so long my body thinks I'm a camel!!!

My dietitian rang me last week to see how I'm getting on. She was most alarmed by the whole situation and said she was going to ring my consultant straight away lol. I was expecting it so I didn't bother to argue this time and just agreed to let her do her own thing! I'll just carry on as I am, doing as much as I can to increase my intake. She couldn't offer me an appointment until the 13th of June.... even though she is so alarmed by my intake? So no one is officially monitoring my weight at all for the next month??? It's a good job I'm a sensible patient!

So, I think that's it for hospital updates but I have some more exciting news!

I met my first fellow gastroparesis patient! It was so nice to finally meet up with someone like me!!!! We had loads to talk about and we have started to make arrangements for some fundraising and awareness. I spent so long thinking that I was alone in all this, a year ago I never thought I would ever find anyone like me let alone meet someone who not only has gp, but comes from the same village as me!!! Honestly, I would never have believed it but strange things happen and I just know we are going to be able to achieve some good things!

That's all for now folks, keep smiling xxx

Monday, 30 April 2012

Home From Hospital

Hi guys,

So sorry for not posting when I got home Ive been spending time with the family after missing them while I was away. Sometimes you just have to switch off and focus on whats most important in life.

Anyway, I got home on Thursday evening after a ten day stop over. I was admitted for dehydration as a result of my intolerance to jejunal feeding. I am currently getting 10mls an hour through the NJ tube which only amounts to 240mls of fluid per day. I am adding in as many tiny flushes of water as I can with my meds and between doses but again it's nowhere near enough. So my consultant is going to phone my GP to try and get them to organise for me to go and get IV fluids at a local hospital regularly so that I don't get so dehydrated again. In theory this is the best plan anyone has had for ages and it would mean I wouldn't have to spend so much time bouncing in and out of hospital with dehydration. However, based on past experience these kind of plans tend to fall apart in general practice. We will have to wait and see how it pans out, I'm going to see them on Weds or Thurs as it gives them time to catch up with the paperwork and hopefully they will be completely up to date by then.

I was told to go back to Durham tomorrow (1st may) at 11:00 for my new thinner NJ tube. They said not to wait for a letter and just go down to the endoscopy unit and they will fit me in as urgent. Again, we have some miscommunication because I received an appointment letter this morning dated for Tuesday the 8th May, which is next week? So I've been trying to phone the endoscopy unit to find out exactly when they are expecting me! Great stuff, more hassle that I really didn't need. I was just saying to hubby the other day how well it had all fit in because I already had an appointment with the pacer nurse on Tuesday afternoon so we only had to make one trip. So I spend the rest of the afternoon trying to find out what's going on.

Aside from appointments etc my new medications are still in the early stages. I have another 3 weeks of antibiotics to take and they are already giving me a sore mouth. Im on a tiny dose of pregabalin at 25mg three times a day and my gp is going to increase the dosage gradually. So for the time being, while I wait to see the effects of my new meds I'm stuck on my 10mls an hour. I feel so tired that everything is achey and shaky! I was having to use my wheelchair to get off the ward, it made me realise just how frail I'm getting. When I'm at home, Im sat for most of my time so I don't notice so much. Its only when you are forced to do something that you realise how hard it is to function at all. My shoulders have really suffered as a consequence of using a self propel chair and my right arm keeps going numb and limp. I really should go and get a better chair but I'm reluctant to buy one because I don't want to have one at all. I can't get my head around that at the moment.

My brother has been working on my website this week so I'm hoping to have it up and running really soon. If anyone here in the uk would like me to add links or advertise fundraising events please let me know. E:mail helpmeminx@yahoo.co.uk


Wednesday, 25 April 2012

The Plan So Far

As you can see by yesterdays post, it was so long I didn't have any energy left to write about the current plans and arrangements they are making for my future care.

My GI and I disgused Manchesters recommendations and he apologised for giving us a sense of hope that my nutrition could be sorted out quickly. In reality it is likely to be another 6-8 months before we know exactly where we stand. It was a bit of a blow because I thought that the 6 week wait for Manchester was long enough to be suffering like this every day. So I have been really tearful today, all I want is some food!

After reviewing the letter he decided to try me on the Pregabalin and Refaximine to begin with while I'm in hospital and see how it goes before adding in any of the others and removing some of my old meds. I have been on them 2 days now, the refaximine is an antibiotic which specifically targets the bad bacteria in the gut and does not have the usual nasty side effects associated with powerful antibiotics. I am starting the Pregabalin for pain, slowly at half a dose twice a day and then moving up to three times a day in a couple of days. If I'm tolerating it well then they can increase the dose. As you can see from the letter there are lots of drugs I haven't tried so I still have some room for manoeuvre if I come across any problems.

Hemis arranging for me to have a new NJnfitted next week and has ordered a 7 French this time instead of the one I have now which is a 12! so I'm hoping the thinner tube will be more comfortable and a bit more descrete! given the fact that it is usually dehydration which lands me back in hospital he is going to arrange for me to go to a local day clinic for IV fluids every week or two just to keep me comfortable. thismisnthe best idea I've heard so far! the dehydration is my biggest nemesis so to have regular support as an outpatient would be great!

It is looking more likely that all surgery has been ruled out and my gall bladder will be staying put...it's a shame because I really do think that it is playing a role in all of this and has been right from the start. Don't get me wrong, I'm really relieved not to have to have more surgery but it means that I will never know now.

When we spoke he said that he would like me to start all the new meds while I'm here and he will try and arrange for the support I need locally, and make the referral to Newcastle ( my nearest centre for HPN).

This afternoon a doctor came round and said I could go home today!...eh? I asked him if he had spoken to my GI about it because there are a lot of things that need to be put in place before I go home. he hadn't spoken to him at all, just looked at my file and noticed that I am self caring and only on IV fluids so was well enough to go home. He didn't know that I am only getting 240mls of fluid through my tube in 24 hours so I asked him how he thought I was going to manage on that! So I told him I would rather see my consultant before I leave because at the moment I'm not up to going anywhere.

The whole scenario was ridiculous and even the sister questioned him about how I would manage. It put me on a real downer because I've been here so many times before...yes I'm freeing up a bed by going home but actually, I DO need the bed...I am fed up of being discharged only to go home and slowly deteriorate to the point where it becomes urgent again. I just can't keep doing that, it's not fair on me and it's not fair on my family. When I do go home I want everything set up ready to go so I know where I stand and I won't be left to soldier on alone as usual, I can't do it anymore, I'm too weak and far too tired.

I am really hoping that I get to see my GI tomorrow because I want all this sorting out before they try and turf me out again. As usual all this could have been avoided if doctors took the time to communicate with each other properly. They don't even have my medical notes on the ward, all they have is the information I have given them on the admission. It's beyond annoying!

So I have stood for myself for a change, I always rush to get out of hospital and every time I regret it so this time I just want to make sure it's right before I go!

the whole thing put me on a massive downer and I've spent most of the afternoon in tears at the prospect of suffering any more than I already have. I'm so sick of having to tell doctors how to do their jobs! I should not have to fight like this for my care...I deserve it!


Tuesday, 24 April 2012

Manchester outcome

Hi guys,

Well I've been in hospital a week now and I finally saw my consultant yesterday. He had just received the letter from Manchester outlining his recommendations for my future treatment and care. We discussed it at length but I'll get back to that in a minute, here's the letter...it's easier to explain by just copying it out for you but I apologise for the jargon...

thank you for asking me to see Natalie. I was delighted to meet her today together with her mother who accompanied her. I won't recount the history of the tests which you and xxx have embarked on previously which are outlined clearly in your referral letter for which I am grateful. she is currently maintained on a wide bore NJ tube and feels she is losing weight despite this as she is intolerant of the feed rate due to pain.

It is clear that she has some background pains which are mainly related to feed down the left side of her abdomen which she feels is new. It is this pain which limits together with some bloating her feed rate.

On examination there was a scar from the previous jejunostomy which has been removed and the stitches.
There is also a central scar from the enterra placement which she tells me never gave her any symptom benefit from her Gastroparesis. there was no allodynia evident on examining her abdomen today.

She tells me that she did have Augmentin and VSL#3 from xxx for bloating which helped for a time. I note there have been unsuccessfull attempts to try and repeat a bacterial overgrowth test more recently. she feels in addition to nutrients she also struggles to get water and electrolytes in. she feels a lot of these problems post dated hemorrhagic complications of her second child's birth and a virus thereafter. She is awaiting gall bladder surgery by xxx.

she numerated her current medication as Buccanl Stemitil, Domperidone, Mirtazipine, Tramadol, Lansoprazole, Movicol, Oramorph, Lorazepam, Paracetamol and Loperamide.

we had about 40 minutes together covering her past medical history, her current symptoms and possible future management strategies and I would make the following suggestions.

Firstly, it would seem she has never tried any neuropathic agents for her pain and I would recommend in the first instance a trial of Gabapentin starting at 300mg three times a day. Since she is not due to see you for some time this can be started in primary care by her GP. I would thereafter recommend following the BNF guidelines in general practice regarding increments of Gabapentin according to tolerance and response. If she is intolerant of Gabapentin then Pregabalin can be tried. It does not appear that she has tried the neuropathic pain agents Nortryptyline or Duloxetine either and these may also be possible add ins to the Alpha 2 Delta ligons if need be. If we can get on top of her pain with these neuropathic pain agents which are usually more relevant for gastrointestinal neuromuscular disease then we may be able to get the feed rate up. I reiterated that opiates are I'll advised in this situation since as well as causing TLR4 receptor mediated microgistial activation with resultant opioid induced hyperalgesia though of course also effect GI motility and may be implicated in the progression of enteric dysmotility to frank intestinal failure and are certainly associated with negative outcomes in the dysmotility HPN group.

Secondly I would suggest she has her NJ tube replaced with a thinner bore more tolerable enteric tube. I am not sure in the North East whether anyone has access to the corral device for no radiological replacement of NJ tubes and certainly I have one or two patients who have had long term maintenance for years on NJ tube replacement every 8 weeks using a cortrak. We do not currently have direct access to this ourselves in Salford although we are developing a business case for it but I have been available locally.

Thirdly I would suggest retesting for SIBO and try rifaxamin in combination with VSL#3 given the previous benefits she had.

Fourthly, in primary care whilst awaiting your further review I would suggest she has her micronutrients checked in particular her zinc, selenium, electrolytes, magnesium, vitamin D, vitamin A and calcium levels and replacement as indicated. If there are concerns about her water and electrolyte intake it is perfectly reasonable for some of these to go down the Naso jejunal tube also.

Fifthly, we discussed the role of the gall bladder surgery and certainly in dysmotility and pain patients unless there is clear evidence of LFT disturbance or thickening of the gall bladder with definite evidence of colicky pain then the gall bladder surgery may well be best avoided in this situation and may be an innocent bystander.

Sixthly, I would suggest involvement of a clinical psychologist for support with the chronic symptoms and also exploration of possible cognitive approaches to pain, Natalie has understandably been disappointed in the past by a focus on possible psychological causes for her symptoms. I can understand her frustration with this but a different focus on support and coping with current symptamology would be helpful and useful.

Lastly, we discussed HPN and whilst short term TPN may be having a role whilst pain control is optimised I reiterated the advice you have given her yourself that HPN in motility patients is an option of last resort as this group of patients generally do worse with PN in terms of complications and certainly the cohort of motility patients on opiates do worst of all. None the less if all else fails and HPN becomes necessary then for the Salford intestinal failure unit a separate referral would have to be made.

I hope these suggestions are of some help and I would be happy to be involved again in the future should the need arise but I have not otherwise made any routine arrangements for Nataliesnreview in clinic.


....ok that's enough typing for one day I'll finish off tomorrow and fill you in and which routes my GI is going to try first etc...for now I'm going back to sleep xxx

Saturday, 21 April 2012

Hospital update

Saturday 20th April 2012 well I'm still here and still none the wiser as to what happening.My GI was held up last week so I haven't seen him yet. all the other doctors just take a quick look at my notes and hold their hands up saying "we'll leave it to your consultant" so I'm just sat waiting for Monday to come round so I can find out what they are going to do with me. So far I've been stabbed a total of 13 times for the sake of 4 cannulas....lovely! Then they left me all day with no fluids because no one had written any on my chart...because I don't have a ward team and it got overlooked! so my mum told em straight AGAIN lol. So at least I'm getting fluids again now and also some pabrinex, which has put some more colour in my cheeks! My feed is running at 13mls an hour over 24hrs. They were going to try a more concentrated feed which has 2kcal/ml but they decided against it because it has less fluid content and doesn't contain as much protein as the one I'm currently using. So no great ideas there either I'm afraid. I can see this being a long drawn out stay and I'm bored already. I miss my kids so much but hubby won't bring them today because my daughter has caught a cold and he doesn't want her to pass it on. I was gutted when he said that! I love my kids and being apart from them so much really hurts. I just wish I could go back to my old life! I've been doing my bit to keep the side up though and have successfully mastered the art of pushing my wheelchair with my drippstand between my knees...it was going well until they complicated things even more be putting my new cannula in my thumb, making it VERY hard to propell the wheels....but I'm doing it anyway, pain or no pain! I like to get outside and feel the fresh air! I had a panick the other night when my Internet went down, totally over reacted and was in floods of tears at the thought of having nothing to occupy my mind! I know part of it was because I feel so I'll anyway but little things like that make a big difference when you are miles away from your family and friends. I so wish the hospital was closer to home! Anyhow, I'll update you all on Monday as soon as I know anything concrete.

Tuesday, 17 April 2012

Back in the Slammer

Hey guys, Just posting a really short one, I'm not well. I have ended up back in hospital again. I don't think I'll be home in any hurry but I'll keep you posted on what's happening. I promise I WILL explain what happened in Manchester yesterday but for now I'm off to sleep, it's too figgin complicated and I have no idea where the next few days will take me so I'm just gonna sleep and hope for the best x

Friday, 13 April 2012

Looking For volunteers!

Hi everyone,

Firstly I want to say sorry to those of you who can't view the video! I can't get it to work on mobile devices which is REALLY frustrating!!!!

Thank you to everyone who has shared it and sent messages, I'm touched by the response and am so grateful for your continued support! I am really trying to help get some action for Gastroparesis here in the UK and am trying to team up with other gastroparesis patients to spread the word and hopefully get some funding for research. I would also like to create a UK branch of G-Pact and have been looking into the possibility of doing this. It looks promising at the moment but due to my own health issues it's going to take me a long time on my own! So I'm looking for volunteers here in the UK to help me to achieve this goal for all of us! If you are at all interested then PLEASE let me know. You can email me at: helpmeminx@yahoo.co.uk or leave a comment below.

I have some great fundraising ideas but am always looking for new ones so if you have a good one let me know! Don't be shy!!!!!!!

For my most recent update please go to the Diary section x

Monday, 26 March 2012

This weeks appointment update

I'm sorry for not posting sooner with an update but you know what it's like!

I've had a really rough week and have been trying to sleep through it all for a while. It's a long story but I'll keep it short !

It was my daughters birthday on Monday...which meant that there was an evil chocolate cake in the house...yep...on Tuesday, I caved... and now I'm in a right old pickle!

My dietitian rang me on Wednesday to see how I was getting on and was more than a little bit worried when I told her the situation. I had already switched the feed off because my abdominal pain was through the roof so she told me to leave it switched off overnight and to start again when I felt well enough.

I had my appointment with the surgeon about my gallbladder on Thursday which was lousy timing but I really needed to go so I went armed with sick bags and stemitil!

My appointment went really well and he said that he does think that the gallbladder is playing a role in some of my pain issues at the moment. He said he would be happy to remove the gallbladder and possibly the pacer too. He wants to speak to my GI first so I'm now waiting to hear back about what they are doing and when. He also said that he would be able to do everything keyhole so I could avoid another open surgery. So that's a little step forward, and hopefully it will answer a lot of my pain issues!

I slept for most of the way home and just flaked out on the bed in my clothes when I got home. I didn't wake up until lunchtime the following day! This is good when you don't get much sleep... but it's not good when you are having to manually flush water down your tube during the waking hours of the day. So now I'm dehydrated and frantically trying to top myself back up.

The weekend was really tough and I realised today that I'm not going to manage if I continue to go downhill much longer. It's my sons birthday on Friday and I want to be here for that so I'm on a mission to regain control!

It just goes to show how one tiny insignificant piece of chocolate cake can completely kick your ass!





Wednesday, 21 March 2012

Hey guys,

I hope you like the videos... I messed up a few times but hey, at least I've mastered video uploads! Im going to try and do some more soon but wanted to know what kind of information you want me to talk about. Let me know if there is anything you feel is missing from my blog which you might want me to include. I am trying to make it a little more user friendly but blogging has its limits and until I get my website up and running there isn't a great deal I can do to change the layout so please bear with me!

I have my surgical review coming up on Thursday so I will update my diary properly when I know more.

It feels like I have been really busy this week but when I sit here and think about what I have done I realise that I have actually done very little. I have been going over things in my mind again which is driving me to distraction. Something happened recently which stirred up lots of old feelings from when I first started on my health journey and I have struggled to try and make sense of my feelings. I sat down to record a video version of my diary the other night because I thought it would be easier than tying to write for a change. Needless to say, I don't think i'll be posting it, I kind of broke down, but when I watched it back I realised just how many feelings I have kept to myself over the course of my journey. I have learnt some valuable lessons over the last 2 years, and when I look back over the events leading to where I am today... I realised that my body may be weak but my spirit is strong and as long as I hold my head up high I will not let this beat me!


Tuesday, 13 March 2012

My video of life with GP



Hey guys here is my story so far, I am going to do a series of videos over the next few weeks to support the information that is already on here. I am trying to build a website but as many of you already know...Im a bit technophobic but at least Ive finally figured out youtube lol.

If anyone has any questions or topics they would like me to talk about please feel free to let me know...just leave a comment or message me on Facebook or Twitter @helpmeminx

Friday, 9 March 2012

Today's Rant!

I went to see my dietitian yesterday. It was as frustrating as ever grrr. I find her so pushy sometimes! I understand that I'm not getting enough calories right now...we all know that, but that is because I can't TOLERATE any more. I have pushed and pushed this least 2 weeks to increase my feed rate, with varying degrees of success and failure. I really am doing everything I can to improve the situation for myself but my dietitian doesn't seem to see that. She just keeps pushing and pushing and pushing. I explained to her that I was spending much of my time flushing my NJ tube with tiny amounts of water because I can't tolerate bigger flushes. Her suggestion was to give bigger flushes so I don't have to do it so often...yep thanks for that little gem, I can't be trying hard enough eh! That really made me quite cross because if that was an option I would be doing it! I asked about the hydra bag but that was dismissed instantly and then I asked if I could have the smaller bags of feed because I'm wasting so much and I'm carrying around all that extra weight just for it to go in the bin after 24hrs. She dismissed that too. She is very unwilling to listen to anything I say and just keeps telling me how she has ten years experience as a dietitian. It feels like if it's not her idea then it's a bad one! She asks question after question after question and it feels like some kind of interrogation at times. I understand the importance of being thorough but she takes it to extremes. She will ask a blanket of questions every week to which the answer is never going to change, like how are you flushing the tube and what with blah blah blah I use cool boiled water just like you told me to do when we first met, why would I do anything different? Nah this week I've been flushing it with vodka you muppet! Honestly I'm not kidding, I even have to tell her what size syringe I'm using when she knows full well what size she ordered for me to use...that's all I have so how could it be any different from one week to the next? Its just plain weird sometimes and I could do without it when Im in pain and I've had to drag myself out of the house into the cold for the privilege. I don't particularly want to spend the first 15 minutes of my appointment repeating stuff that she already knows! Then she put the cherry on the cake by saying that if I could keep pushing through the pain and increasing the feed I'll feel better for it. NO REALLY, what? I'll feel better when I get more food in...your kidding, why didn't I think of that? Obviously I'm not suffering enough right now and I need to stop being a wimp and just grin and bear it so I can trade being in bed because I've got no energy for being in bed because Im in total agony! It's not just distressing for me it scares my kids too and they get really upset when they see me suffering. It is way too much to expect someone to live like that and I was pretty disgusted by her attitude towards my symptoms. I have a lot of pain already with the regime that I'm following but obviously that's not significant because I don't walk into her office with a grimace in my face. I have had this with every dietitian I've seen other than my team at Durham. They just have no idea what my problem is, they just don't get it and I'm sick of it!

Tuesday, 6 March 2012

It's A Waiting Game

Hey guys, Im posting because I got my confirmation for my appointment in Manchester today. It is for the 16th of April which sounds like a million miles away to me at the moment. I can't even begin to explain how drained I feel and I just know its only going to get worse which is the hardest part to take. I'm spending much of my time giving flushes down my NJ tube because I'm not tolerating enough feed to keep my fluids up, meaning I have to do 10ml water flushes throughout the day. I'm going to ask my dietitian if I can get some hydra bags (water) so I can switch to water for a few hours a day...I think anything is worth a try at the moment because quite honestly I'm not getting enough of anything right now anyway so I might as well try it and see if I can get some more fluid on board. I did also think that it might be worth trying the basic feed again to see if I can tolerate higher volumes of that, it's less calories but if I can cope with a higher volume then that would also increase my fluid intake. I think sometimes we have to just take charge of ourselves and just do what you think is best for you! It's not good relying on people who don't live it to tell you what you need to be doing. Of course I won't make any changes without speaking to my dietitian first but at the end of the day no one else has any ideas right now!

Friday, 2 March 2012

My latest consultation

I got my letter from my GI yesterday. It's funny how, you can hear someone say something and think you are coping with it, but when it is written in words it's so much harder to take? I don't know why that is but for me having it written down makes it real...if that makes sense? I'm not posting this for mild entertainment, please remember that this is my life and not a soap opera! It takes courage to bear your soul to the world and share these intimate thoughts and feelings but I do so to help the thousands of other Gastroparesis patients who are battling this horrible condition. By sharing our experiences we can learn together and hopefully learn to live with the challenges that face us. So here it is: I reviewed xxx today. I am sad to say that the Nasojejunal tube feeding has not worked. She is only managing 17mls an hour and is feeling quite uncomfortable with this and sometimes in severe pain. She continues to loose weight and this is really quite worrying. She is also looking quite low and I thought she looked more down than I have ever seen her before. I am not surprised as we have really put her through a number of ordeals and nothing seems to be working. I am going to refer her for a further opinion to xxx in Manchester with regard to possible TPN as I don't see any other options at the moment. Dr xxx has considerable expertise in this field and may have one or two other ideas. I have asked him to see her as soon as possible in view of the continuing weight loss. We reviewed the fact that she has an 8mm gallstone. I did not feel that this was the cause of her symptoms and would only suggest removal of the gallbladder if she was having surgery for other reasons, but I have out this to Dr xxx in my referral letter to him. I have given her a further appointment in 6 months time. So that's the plan guys, I'm just waiting for my appointment to come through and we will take it from there. he also increased the dose of one of my meds which has helped me to sleep a bit better than I was and so now I can at least have a few hours of total rest from it all. All in all I'm doing ok, I'm just pushing as much as I can with the feed every day and resting a lot to avoid using my precious calories. I will be so glad when I find something that enables me to start living again xxx

Thursday, 23 February 2012

Holding my own.

Hi everyone, Lots has been happening over the last month and its hard to remember everything but heres a run down of where I'm at right now. The tube feeding isn't working...by that i mean my body isn't tolerating it. We initially thought that my recent pain issues were related to my surgical tube but after having that removed and having a naso jejunal tube placed, I'm still getting pain. So we are left with no option but to go to Manchester for assessment for TPN (IV feeding). This is not a good place to be and I'm finding it hard to accept. I'm really down about it all and just wish that for once something would go my way! I'm waiting for an appointment to go over there but my GI said it could take up to 6 weeks. It will give me time to get used to the idea but it also means that I'm going to be in a much worse place when I do finally get there. I am back down to 45kg, not my lowest of 42 but I'm fast approaching that now. I still have my naso jejunal tube but I'm only getting 300 calories a day through it at the moment. My dietitian thinks I should be in hospital but I know my body well and for now I'm managing. I'm also waiting for my surgical review for my gallstones. My appointment is towards the end of March but my GI went over it a little when I saw him on Monday. He said he will recommend that they remove my gastric stimulator and do some more biopsies when they do my surgery. This was a bit of a shock because I hadn't given up hope on it working yet! Obviously he thinks that we have tried it for long enough now, I just wasn't expecting it, especially after my last adjustment when the rep told me that there were a few other settings they could try. I feel like I went through it all for nothing and just have a tummy full of scars and holes for nothing. Now I have to face more as a result...that wasn't supposed to happen, I was supposed to get better! I always knew that it was a possibility but at the same time I thought I was doing the right thing. I struggled to make the decision to go ahead in the first place and once I had committed myself I was determined that it would work for me. It turns out it doesn't matter how determined you are when your body has other plans!

Saturday, 18 February 2012

Lost

Hey guys, finally I think I'm in the right frame of mind to put some of my thoughts and feelings into words. I need to get myself together and sort this mess out! My question is, how do you really express how you feel when you don't understand yourself? That's been my problem this week. My usual course of action when faced with a new Gastroparesis issue is to read...read and read some more. It helps me to understand my body and what processes are going on in there to make me feel so utterly rubbish. However, I have found recently that I can't bear to read one more article about the benefits of gastric pacers and domperidone. If they were really that good we would all be doing cartwheels and eating chocolate cake! In reality, it doesn't work for everyone...but know one knows why. This becomes a big issue, especially when explaining your illness to someone new. Well why isn't all that treatment you're getting working? Why can't you just eat more? Why don't you try and exercise that'll help! Have you tried this that or the other...really? Then there's my personal favourite well you were fine before...what changed? My answer....I DON'T KNOW, I DON'T KNOW, I DON'T KNOW! Today...I really don't care why or how, I just NEED to feel better. The latest problem I'm facing is that the Naso jejunal feeding isn't going well. I had pinned all my hopes on getting the surgical jej removed to get rid of the pain but alas...after starting the feed the pain has returned. It's so hard to keep going when everything keeps going so horribly wrong all the time. You just go through the motions of one procedure to the next always hoping that this time you'll make some headway. My next appointment is on Monday, I've spoken to my GI already and I know what's next, I just need to talk some things over before I psych myself up for the next step of my journey. I'll post soon and let you know what's happening. For now I'm just concentrating on keeping my head above water x

Sunday, 12 February 2012

Bad Times

I'm feeling pretty miserable at the moment and don't feel that I should really put it into words right now. I'm trying to stay positive but it's impossible to be positive all the time. Apologies if I'm late in replying to any emails, I'll get back to you on my better days xxx

Wednesday, 8 February 2012

My new feeding trial.

Hey guys, Just posting to let you all know that my naso jejunal feeing tube is up and running. It was all done early this morning but it's taken all day for me to get up onto a ward and be admitted fully. I don't really know what the plan is yet but will be seeing my GI tomorrow. I'll be sure to fill you all in on the details tomorrow. We have just re- started the feed this evening at 10mls an hour with a view to increasing it by 5mls an hour per day after that. I'm already feeling uncomfortable with it as I haven't been to the loo in weeks so everything is tight and sore. I'll be so glad when they finally pull out my surgical jejunostomy tomorrow! Maybe that will help x Here's hoping!

Tuesday, 7 February 2012

Waiting...

Hi guys just thought I'd stop by and scribble a bit before tomorrow. I'm going back to hospital in the morning for removal of my jejunostomy tube and placement of a new nasal jejunal tube. We are testing to see if the pain settles down with the surgical tube out of the way. If things go well and I tolerate the feed I will be having a PEG tube with jejunal extension. I'm not sure what the plan is yet, I'm sure I'll find out tomorrow. I'll try and post tomorrow evening to fill you in on the details.

I've not been too good this week pain wise and will be so relieved when this tube comes out!

Here's hoping this new plan works better xxx keep your fingers and toes crossed for me xxx

Saturday, 4 February 2012

Where do we go from here?

Hello! Guess who's home!!!!!!!!!! What a week it's been. I've been on a real roller coaster ride and my head is spinning a little. Forgive me if this post is a little erratic but so much has happened my brain hasn't taken it all in. I suppose I should start with where I left off on Wednesday. So...Right, the CT scan results came in on Thursday, it was my GI's surgical reg who came to speak to me. I was relieved that it wasn't Mr Ego because I feel I can talk to my GI team more freely, they are much more approachable...and dare I say human lol. The result of the scan was clear! So I'm left in the position that, yes, I don't need surgery...but also, what do we do now? It is looking more and more likely that I now have visceral hypersensitivity in my small bowel too. Which is not so easily overcome. The adjustment I had to my pacer earlier this week has not made any difference yet but it can take months to start working effectively. As promised the specialist nurse returned today, along with the Medtronic Rep (pacer guy). They have increased the voltage again and are also arranging for me to see them in clinic for a follow up in a month or so. I asked about getting a registration card for my pacer, which I should have had by now, so that's another little issue resolved. I greatly appreciate everything they are doing for me, it's so comforting to know that they're not giving up on it, which gives me hope for the future. I re-started the feed on Thursday morning and sure enough, by the evening, the pain had returned. I also had an awful migraine to boot. The feed was only running at 10mls an hour so this is not a good sign at all. The original plan was to start the feed along with some IV Pabrinex (vitamin compound) to prevent re-feeding syndrome...after being starved for a week, while resting my bowel. Then, aim to go home on Saturday if all went well. However, due to the recurrence of pain issues we have had to change the plan. When the surgical reg came to see me this afternoon. We discussed the issues I was facing and he went to discuss it with my GI. I knew it wasn't looking good but what's new these days! It feels like one crisis to another all the time. My GI came up to see me after hearing about the recurrence of pain after starting the feeding process again. We talked it over at length, and decided that I can't possibly continue to use the jejunostomy tube when it causes so much pain. This is narrowing down my nutritional options again and he said that we really needed to consider moving on to TPN (Feeding nutrients into the blood stream). My heart skipped a beat when he said it. I've tried so hard to fight tube feeding all this time and now even that is failing! I felt like it would be giving in...don't ask me why...I don't understand myself sometimes...it just seems like if I do that, I have given up. He explained that I would have to move to another hospital (much further away) to be assessed and get everything set up. It would also mean being away from my family for even longer. I felt so desperate but deep down I knew I had to do what was necessary to get well again nutritionally. I would like to think that I could persevere with the jej tube and just keep taking the pills, but it's no life when you have that much pain every day. I agreed to go ahead with what ever he thought best, I really need to move on from here and if that's the way forward then so be it. He went to make a phone call to Manchester to try and arrange something for me. He came back shortly after, with a big smile on his face. He had explained the situation to his colleague in Manchester and they had seen similar cases to myself before. They said that the pain may be caused by the tube being pulled down into the small bowel. Explaining why the pain had been so acute! So now we have a totally new plan and no trips away. He said I could go home for the next few days to be with my family. He has arranged for me to go back in on Wednesday to have my jej tube removed and have a new naso jejunal tube put in instead. This will test to see if I can tolerate the jejunal feeding without the surgical jej tube there to cause problems. If that goes well they will place a new J-PEG (tube that goes into the stomach but has an extension which runs into the jejunum for feeding). The poor dietitian had been backwards and forwards all day trying to sort out various issues with my feeding regime. She has put me back onto the energy feed at 10mls an hour and included 2-4 hourly flushes of 25-50mls. The original plan was to try and increase the feed rate by 5ml/hr per day but after hearing the new plans she said not to worry about it too much for now until we get the tube issues sorted out but try and have some bolus doses of calogen through my tube instead of continuing to push with the feed. I had to breathe a huge sigh of relief!...phew, I felt so much better knowing that there was a possibility of avoiding TPN. My family were also delighted to hear that we still had options, they had been worried sick about me all week. I feel so guilty for putting everyone under so much stress all the time. I think that's the hardest part of being ill. You can see what it's doing to the people you love but there's nothing you can do to make it better for them. My children suffer the most and have had to do a lot of growing up recently, it's been so hard on them. So I'm writing this from my comfy chair at home! It started snowing here this afternoon and everything looks so magical. I enjoyed watching my children playing in the snow out of the window, perfect! What a welcome home! I thought it best to tell them I was home on weekend leave so that they fully understand that mummy will be away again next week for a while. I think it was a good move because they won't think that mummy is going back because she's got worse again. It's alway hard to know how to approach these issues with little ones. I guess all I can do is reassure them while I'm here and make the most of some quality time together.

Wednesday, 1 February 2012

Back in Hospital...Again!

Where do I start? Ok...Last wednesday night I was in severe pain in the area around my jejunal feeding tube. I spent most of the early hours of the morning glued to the computer, desperately trying to ignore the pain. It got to around 5am and after full doses of tramadol and oramorph, the pain was still incredibly intense. Those of you who know me also know how much I hate A & E but in this instance I really had no choice but to go. I was downstairs at home and my hubby was sleeping soundly upstairs so I had to ring the house phone to wake him up because I simply couldn't move by that point. Luckily the children were staying at their grandparents for the night so we didn't have to worry about arranging a baby sitter. Unfortunately my local hospitals are a total waste of time so I had to tolerate the long drive back to Durham where my GI is based. It was the longest car journey of my life, I was in so much pain by this point that I thought my intestines were going to burst! I stopped my feed, thinking that was causing the problem. By the time we got to the hospital I was in a real state. They were very quick to get me in and offer pain relief but at the time it felt like forever waiting for that IV morphine! They quickly got me in for an x-ray which showed that my body was loaded with poo....mmm no smart comments please lol. I was assessed by one of the doctors, who clearly knew nothing about gastroparesis...I told hubby not to bother asking any questions at this stage because I knew they wouldn't be able to answer them for him. I had to laugh when he asked where the toilets were and the doctor said he didn't know! It was a proper "I told you so" moment lol. Anyway, I was admitted to the surgical admissions ward and put under the care of yet another consultant...yes that's 3 now, why they didn't hand me back to the one I saw last week when we found out about the gallstone I don't know...that's the NHS for you, lot's of silly systems that don't really work for the patient. So I had to go over everything all over again with this new surgeon (we will call him Mr Ego). He was very flippant with me and said that I probably just needed a big poo! So I had to endure the joys of having an enema, which incidentally, did nothing for my pain! I was sen by Mr Ego the following morning who seemed not to be bothered at all and just said I should re-start my feed at a reduced rate and see how it went. Great...so he thinks everything is fine, just what I need! However I saw my GI later that day and his concern was very clear. He said that it could be either a structural problem with the jej tube or visceral hypersensitivity of the intestine (The same problem I have with my stomach). He also said I should stop the feed immediately and should be kept nil by mouth and nil by jej for several days to give my bowel a rest. He said they would need to do a CT scan to see if there was a structural problem which could be fixed. He also told me that he would be away at the beginning of the week but his registrar (who is also very nice) would take care of me in his absence. We were heading for the weekend and I wasn't classed as an emergency case so I was put to the bottom of the list for the scan. They kept me comfortable with IV fluids and regular IV tramadol and paracetamol (It's worth mentioning that I'm not allowed a full dose of paracetamol due to my low body weight...something to be cautious of if you are in the same position weight wise!) I was still getting pain between doses at this point but for the most part I was fairly comfortable. Monday came round and another visit from Mr Ego, who just said, we're still waiting for the CT scan and we can't do anything until you've had that. I presumed I would be getting the scan the same day but about an hour or so later one of the junior doctors on the team came to ask me some more questions. When I asked him why, he said that the radiologist didn't think I needed a CT scan at all so I might not get one at all! If you read my diary you will know that this is exactly the same situation I found myself in 2 years ago when this all started and they thought I had gallstones...I never got the scan and now we have just found a huge gallstone sitting in there...2 years later! I was devastated and I had an awful feeling that I was going to get brushed away again and sent home without any answers again! Especially now my GI wasn't there to fight my corner for me! I rang my mum to explain what was happening and she was so mad that she rang the hospital herself to get someone to find out what was going on! They promptly got a doctor from the team to come and explain the situation and he assured me that if the consultant wanted the scan he would get one. By Tuesday the pain had settled greatly and I was needing less pain relief, which is great, but it also made me wonder if whatever was going on had settled down to the extent that it would not show up on the scan when if I ever got one! Today is Wednesday and another flippant visit from Mr Ego! He just said...still waiting for the scan, and left! He went into the corridor...entourage in tow, and proceeded to discus my case within earshot. I heard him tell his minions that he wanted me to have TPN (Total Parental Nutrition) which is where they place a line into the veins near your heart and feed you directly onto the blood stream. Sounds ok in theory but TPN is very bad for the liver and definitely not I was worried sick because I know several people on TPN and although it does solve a problem, but it can cause complications that I would much rather avoid if I can. I admit I have not read much about it because I never considered it was going to be part of my journey. My GI's registrar came this afternoon and said that he had basically told Mr Ego that he was way over the top and we should try everything else before resorting to that. Phew!!!! He then said that he would arrange for the dietitian to come and write up a new feeding regime and also get someone to come and adjust my pacer to see if that would get me eating again. Sure enough, this afternoon, it all happened at once! First the specialist nurse came and increased the voltage on my pacer, Then the dietitian arrived to write up my regime and then FINALLY I got my CT! The CT prep caused another quandary...I can no way drink a litre of fluid within an hour! So my registrar arranged an alternative for me. I had to drink one glass of prep orally and flush as much as I could down my jej tube. I managed half of it but it did leave me feeling very uncomfortable. So, now I'm waiting for the results of my scan in the next day or so...fingers crossed guys! I was supposed to restart my feed tonight but after having the pabrinex (vitamins) needed to prevent re-feeding syndrome, we looked at the regime the dietitian had written...she has prescribed the wrong feed! Great! So now I'm waiting to find out if they will be able to go ahead anyway with the basic feed or whether we will have to wait for the dietitian to return tomorrow to change it. So that's my week so far....I still have a hugely bloated belly and haven't been able to 'go' or even felt the urge, but at least the pain has settled. I just hope that starting the feed doesn't start the pain off again! I'll post when I have any news for you. A massive thanks to everyone for your support and messages on Facebook etc and I'm sorry I couldn't post sooner. I've just got a new laptop and dongle so now I will be able to keep you up to date more easily and once again I'm sorry for worrying you with my absence xxxx

Tuesday, 24 January 2012

My Surreal Weekend In Hospital

Oooh it's been a rough ride since last time I wrote my diary.

Where to start?

Well.... I have been getting a lot of pain in my abdomen where my feeding jejunostomy is placed. On Friday (20th Jan) I visited my GP about the pain once again, because it was getting more severe as the days went on. I was unlucky because I ended up having to see a locum who didn't know anything about me. He prodded on poked my tummy, which made the pain even worse. Then he said, he had no idea what to do for me and I should phone my GI when I got home to try and get in to see him sooner than planned. I knew I had to get help soon because I was in constant pain all over my abdomen by the time I got home.

I rang my GI's secretary, who was lovely as usual and told me she would ask him to ring me back as soon as possible. He called me later that afternoon. After explaining the problem he said that he could arrange to see me on Monday because he would be able to organise and co-ordinate everything before I went through. He asked how I would feel if my pain got worse and I had to go to A&E.... as most of my regular readers know, I HATE A&E because they never know anything about GP. It's not a common problem. This always leads to hours and hours of waiting around to be told that your blood is o.k and you've had some pain meds so now you can go home. My GI understood me when I said I probably wouldn't go even if I needed to, so he said he would call me back after he had made some enquiries. I got a call from the surgical member of his team a little while later. He had arranged for me to be admitted to hospital for some further tests.

It's a very long drive from my house and when you're in pain it seems to take forever. You feel every single bump in the road. I was pretty exhausted by the time we got there at 6pm. I got settled into my bed  and hubby left me to go and collect the kids, who had been dumped on grandma at the last minute (again). I felt so bad leaving them, my daughter was in floods of tears that I was going to hospital and leaving her again. The guilt was horrendous.

The nurse who admitted me did the usual thing...Gasto what? Ehlers...how do you spell that? But I'm used to that now and have some great one line comebacks.... I'll post them on here someday!

I spent much of the night vomiting copious amounts of bile. Normally I throw up a bit of acid and then dry heave for the rest of the time. This was different and I knew there was something new going on. On Saturday I went for down for an ultrasound scan, for which I thought they were investigating my tube site. It was the fastest ultrasound I've ever had... and I've had several! He barely looked at my tube site at all and then sent me back to the ward. I didn't know what to make of it at the time, was it a good thing...there is nothing wrong... or is it something so obvious he didn't need to look any further?

I slept...and slept... and slept some more. They had... for once, managed to balance my pain meds enough for me to get some real sleep for the first time in months!

On Monday morning I met my new surgical consultant. He was really lovely and I think he will look after me well. It turns out he had been to see me on Sunday but I was asleep so he didn't wake me. If I hadn't been laying in bed at the time I would have fallen over at what he said next. It turns out that I now have one huge gallstone sitting in my gall bladder.

Right back at the start of all my problems I was convinced it was gallstones that was causing the problem
but after 5 ultrasounds, an MRCP and HIDA scan they were ruled out more than once. So It seemed like a VERY strange coincidence that I now suddenly have a huge gallstone sitting there, clear as a bell.

Now... normally it is fairly simple to remove the gallbladder with keyhole surgery. However, I have the jej tube and pacer (gastricneurostimulator) wires in the way. So my only choice is to have another open surgery. I'm not even over the last one yet and now they are talking about more. I'm not liking the sound of this at all. He went on to say that the pain in my tube site is likely to be adhesion's from the surgery and there isn't really anything they can do about that. I've just been really unlucky I guess. It does not help me feel any better to know that because I know I'm not going to get rid of that pain... at least not for a long while. Anyway, he said that he would ask my GI to come and see me before going home, but I could go after that. At least now I had some better pain medication to get me through.

My GI came late in the afternoon. He is very disappointed about the whole situation because now I have adhesion's from my first op, I am more likely to get them again with another surgery. He did reassure me that I had the best man for the job in my new surgeon. That's good to know, however I would rather not have to go down this road at all!

As per usual, it was kind of a bad time to go home from hospital because the pharmacy was closed by the time it was confirmed I could leave. So I asked my mum to phone my GP for a fax number so we could arrange for me to collect my oramorph first thing today. The hospital offered to let me stay in overnight until they could dispense it themselves but foolishly I just wanted to be home in my own bed. I trusted that everything would go as planned so why stay? I needed to see my daughter and reassure her that I was going to be o.k.

My hubby went to get my meds this morning, only to be told that they had not received anything at all from the hospital so they couldn't dispense anything. Aaarrrggghhhh! So I have spent the whole day in agony, ringing back and forth between the hospital and the doctors surgery. It got to 4pm and we still hadn't heard anything back. My mum had to go down and get them to ask the GP to just do the script himself so I could get some relief! It worked lol and they soon got it made up for me. However, they still need ME to chase the hospital for them to fax the script through....erm...why does the patient have to do that? Shouldn't that be their job? really...c'mon people, I'm SICK!!!!