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

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'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! 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'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 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: 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