The Beginning

I thought it may help people to share their stories if I started with my own...so here goes!

I have suffered with unexplained stomach pains for the last 6 years. Until recently they were random events on an infrequent basis, because they were few and far between I did not go to the doctor about it. Sound familiar yet? I weighed roughly 63Kg and was studying nursing at university.

In march this year I went to see the out of hours GP as the stomach pain had come back with a vengance. I was admitted to hospital and had a chest X-Ray, Ultrasound and Gastroscopy and ECG. All the results came back negative but the pain was still very severe. I was sent home after 5 days in just as much pain and no follow up appointment.

Following my discharge I visited the GP regularly as the pain was persistent and I was unable to eat anything because it made the pain worse. I was loosing weight at a rapid rate and no one seemed to be concerned as the tests had been negative.

It wasn't long before I started to feel dizzy and tired due to the lack of calories and high dose pain killers. I went up stairs to bed one evening an fainted at the top of the stairs. At this point my husband had had enough and took me back to hospital.

I was there for 2 weeks this time, I had a repeat gastroscopy, colonoscopy, and another ultrasound scan. Again all the tests were negative including coeliac screening and crohns disease. They were concerned about the weight loss but because the tests were clear they sent me home.

I was home for 2 days and went back in with severe dehydration, my blood counts were all over the place and I weighed 49kg but still no answers to the mystery. I was in hospital for a further 6 weeks this time, and had to be fed through a tube to try and stabilise my system. This got my weight back up to 53kg. I had another ultrasound scan...guess what..no answer. I was  then transferred from the surgical team to the medical team as they were suggesting that it was a "functional" problem. They did not really explain this to me so I asked my mum to look it up on the internet for me (You will find information on this site).

The consultant gastroenterologist that took over my case also suggested that this was a functional problem and that treatment could take quite some time. He then mentioned that I should consider being fitted with a PEG which is basically a feeding tube which goes through to your stomach from just above the naval. As you can imagine this was a huge shock to me and I instantly refused to do something so drastic at that stage. I was very worried about the weight loss but just couldn't bear the thought of having something so intrusive. I just wanted it all to go away.

Following my discharge I was referred to the local eating disorders team to monitor my weight and a psychiatrist to see if there was any underlying stress which may have triggered the onset of these symptoms. I was assessed for eating disorders during this process but it was agreed that this was not the case. I currently see this team fortnightly to monitor my weight and for support in dealing with pain. 

I recently went to see a specialist in functional gastrointestinal disorders and he has recommended some further tests, HIDA scan, MRCP and a radioisotope scan. He also suggested that I see another consultant who specialises in joint hypermobility syndrome,  because I scar and bruise easily and am slightly double jointed, apparently this can effect the motility of the gut. So, we have some new roads to go down, it may take a while but I WILL get better!

xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
4 weeks later...45.9kg

Hi folks,

Here's the latest update...

I went to see my consultant yesterday and he is finally going to arrange for the above tests to be done after 4 weeks of waiting! So I suppose i'll be waiting another few months to get them all out of the way.

On the positive side we now have a plan to enable me to continue my studies early next year if all goes well! If  his diagnosis is confirmed and it is a result of delayed gastric emptying then I will have a PEG (feeding tube) fitted to build me back up to a manageable weight. And then there are two surgical options which will make my stomach work more effectively. One is to fit a gastric pacemaker which will stimulate the stomach to work as it should. The other is to put another hole in the stomach to allow it to empty faster.  Both options will make my stomach work better but may not have any effect on the pain. So, some decisions to make but it's good to know that something can be done...it's the not knowing that makes it so tough!

Whats your opinion, what would you do?

xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
Tuesday 23rd November 2010
45.2kg

What a day!!! Woke up this morning feeling really ill, my heart was racing and the pain was unbearable. So I took myself off to the GP yet again. Whilst I was there they did an ECG which showed that my heart was ok. They also did a blood test which showed that my D-Dimmers were raised so I was sent to the assessment team at my local hospital. They told me that they suspected that I had a pulmonary embolism ( a blood clot in my lung). They gave me some daltaparin to thin the blood and hopefully dissolve the clot, they also did a chest x-ray to see if it was visible...you should know by now I'm not that easy lol. I was aloud to come home with some extra pain killers to add to my personal pharmacy. I will be going back first thing in the morning for a CT scan to confirm it.  They told my husband to ring 999 if I got any worse overnight...which is never a good thing to hear!

So just another thing to add to the saga that has become my life, I'll post again soon to let you know how it all goes x

xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
Thursday 25th November 2010
43.9kg

After writing my blog the other night the sickness came back... I spent all night getting up and down to throw up. This has got to be the lowest of the low. I have spent the last few months trying to gain weight and then in the space of 3 days i've lost nearly 2kg.

I went back for the CT scan yesterday and it was clear! Wow that was scary, but finally something has gone my way lol.

I feel like I've done ten rounds with Mike Tyson today...I feel broken and I want to be fixed!

xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
Friday 26th November 2010
43.4kg

Been back to the GP today, blood tests were ok but I'm a bit dehydrated from three days of constant vomiting. I had a long discussion with the Dr who said,

"We may never find out what has caused this, and I would suggest that it may take quite some time to resolve. What we will do is keep you alive."

xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

4th December 2010
43.00kg

Well I’m back in hospital. I came in two days ago because my GP pleaded with me to let her send me in.  I haven’t seen my own consultant yet, and am under the care of a new gastroenterologist who I have yet to meet.
So far I have had the NG tube put back in and 2 chest x-rays  to check its position because the first one showed that the tube was sitting at the bottom of my ribs instead of my stomach! I’m on IV fluids, which was another battle as my veins aren’t very good. It took 3 Dr’s and one nurse 13 attempts to get a cannula in. I’m covered in bruises and generally feeling sorry for myself lol.
God knows how long they’re going to keep me here I just hope I’m home in time for Christmas! I still haven’t done any shopping so no pressies from me this year folks sorry…. maybe I could make some out of sick bowls and sticky tape a la blue peter ha!
Xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
6th December 2010


Still waiting to see my own consultant but saw a medical registrar this morning. They can’t tell me when I will be able to go home yet but my bloods have stabalised. I have asked permission to go to my daughters nativity play tomorrow night but will have to wait till tomorrow to find out. They are going to increase the rate of the NG feed tomorrow so we will see how that goes.
I’m feeling a bit low today, it would be nice to get someone to give me an answer for a change instead of always “wait and see”. The only thing that I can enjoy at the moment is the odd cheeky cigarette! Maybe a visit from the family today will lift my mood a bit.

Xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
8th December 2010


Well, I got permission to go to the nativity play last night and it was great, it really cheered me up!
I also saw my new consultant yesterday, they are going to have a meeting with my regular consultant to try and find out what he is doing about the tests I need. They cant really tell me any more until the tests have been done so hopefully they will be able to push them forward a little bit. They said that they will try and get me home in time for Christmas, even if it is only for a few days. My feed is running 24 hours a day so hopefully I will be able to put weight on quite quickly. The sooner the better as far as I’m concerned because the tube is giving me the worst sore throat ever!
We are having a meeting later today with the patient liason team to discuss an inappropriate entry in my medical records, which was written on my last admission by a dietician, stating that she thought it was an eating disorder. I believe that it was this entry that has delayed my treatment so far.  We will also try  and establish what the long term plan will be and what the future holds for me.

Xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
9th December 2010


Another day…another disappointment! Still no news on when I will be having the tests. Although they will be done whilst I’m here which is a start at least!
I have a target weight of 53kg before I can think about going home, which means that I will be stuck in hospital over Christmas. 10kg feels like a mountain right now…god knows how long it will take to get there! They are going to let me go home for Christmas day and boxing day, so at least I’ll be able to watch my children open their presents. It has got me down a bit today which is unusual for me as I have tried to stay positive throughout this process. My throat is really sore now which isn’t helping my mood. I have also moved to a new ward, which is where I will stay until I am fit to go home.  I know a lot of the staff on here as I had a placement here whilst I was at uni, it’s nice to see some familiar faces and eases the boredom a little.
We saw the dietitian who has caused all the trouble today and she went bright red when my mum mentioned that I had been assessed for an eating disorder and this was not the case….I think she had already had a bollocking as she looked very uncomfortable when it was mentioned. So at least we sorted out one problem today!

xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
Saturday 11th December 2010
44.8kg

Finally have the dates for my HIDA scan and MRI, first thing on Monday morning! Progress at last, I was supposed to have the MRI on Friday but the machine broke down so it was put back to Monday. I don't mind though because at least I know it is definitely going to happen now!
I had to have the NG tube removed this morning as it got blocked up, I'm waiting for the Dr to come and put a new one down. It's going to be a late night I think. After they have put a new one in I will need to have a chest x-ray, then wait for a Dr to come and review it before they can finally re-start the feed. My guess is that it will probably be around 3 am before we have finished faffing around ha ha.
I'm in a much better mood today as I was allowed out for a few hours. I went out with my husband and had some quality time together which has really lifted my spirits. I also had a phone call from my very best friend who will be coming to se me on Monday too!
I'll keep you posted on the scan results etc.

xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
Monday 13th December 2010
43.95kg

As you can see I've lost the weight that I had managed to gain last week! I have waited all weekend for a Dr to put the tube back in! They came at 9 o'clock last night so had another late night trip to x-ray!
Unfortunately they could not start feeding me last night because of the HIDA scan that I was supposed to have this morning. Guess what...it was cancelled!!! Apparently they didn't have the radioactive dye that is used for this scan and they have had to order it in. I guess i'll be waiting for another few days now...nothing new there eh lol. It's a good job I'm a patient person, anyone else would have complained by now. I haven't seen the Dr today so have no further news to tell you...i'll post again as soon as I have any new information.

xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
14th December 2010

MRI and MRCP done at last! I will have to wait a few days for the results, but thats ok.
I was a bit worried this morning when they told me that I would have to drink 1.5 litres of fluid prep for the scan to work though. I haven't been able to drink more than 30-50ml without pain for months now. They waited until I got down to the MRI scanner before they gave me it and expected me to drink it all within half an hour! I explained that I probably wouldn't be able to keep it down so they let me off with only having 500ml. It left me in severe pain but I did it for the sake of finding the problem! It still hurts now 4 hours later!
I missed the consultant whilst I was down there so won't see her till Thursday now...hopefully with the results.
I'm having the HIDA scan on friday morning so it's all happening now. Finally feel like we are making some progress!!!!!

xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
15th December 2010

I saw the registrar again this morning and the scan results were clear! It's good to know there aren't any tumours or anything but it is very frustrating not knowing the root of the problem! They have increased the dose of my painkillers after the pain I had yesterday, so hopefully that will help me to tolerate the feed when they increase it over the next few days. I am seeing the consultant tomorrow so I will post again as soon as I know anything new.
Missing my family like crazy and would like to say a huge thank you to my friends for visiting me and for the lovely pink christmas tree...it has pride of place on top of my locker!

xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
16th December 2010
46.3kg

As you can see I have gained a good deal of weight this week! I have seen my consultant this morning and asked the fateful question, "If all the tests come back as clear, where do we go from there?" The response was a bit of a disappointment really, She basically said that she was only looking after me whilst I'm in hospital and it is up to my regular consultant to decide what to do next. It left me feeling a bit deflated as I know that my regular consultant is happy to do nothing and watch me coming in and out of hospital with this for quite some time to come. I had a bit of a tearful moment to myself as I really don't think that my regular consultant is doing his best for me. I was hoping that this new lady would take over my care but it looks like that's not going to happen. I am going to ask my GP to refer me to the neuro gastroenerologist in london on the NHS and go and stay down there for a while. I really want to avoid having the PEG fitted but it is looking like that's my only option at the moment if I want to avoid all these lengthy hospital stays.
I think the absence of visitors this week due to the flu ransacking my whole family has not helped my mood. It's kind of a combination of pain, worry, anger, frustration and boredom! I really could just cry all day and night, when is this going to end??? What kind of life is this going to be for me and my poor family, especially my two young children? I feel like a burden on everyone. AARRRRRGGGHH!

xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
18th December 2010

Ok OK I've had a good talk with myself and I have to snap out of this doom and gloom! Christmas is fast approaching and I will be going home for a few days so I'm going to focus on that now!!!

I had the HIDA scan yesterday which was a surreal experience. I was laid on the scanning table for 2 hours whilst they took a series of pictures of my gall bladder and bile ducts. They 1st injected a dye into my blood stream which helps the vessels show up more clearly on the scan and then about an hour into it they put another tracing dye in which makes the gallbladder contract. I cant say it was a pleasant experience and it left me in quite a lot of pain afterwards. I was also radioactive for a short time after the scan. I was kind of hoping I would turn into wonder woman after all those chemicals lol. So now we just have to sit back and wait for the results to come back. The next step will be the gastric emptying test but I don't have a date for that yet. As soon as I get the results I will post again, but don't hold your breath that we find an answer because as we all know by now...I'm not that easy lol.

xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
19th December 2010

Hit rock bottom again this afternoon. The NG tube blocked so we were forced to take it out again! After 6 attempts to get a new one back in the nurse gave up, I just couldn't take it any more. I was in floods of tears. I really want this to stop! They asked the Dr to come and have a go, which of course left me worrying about how much it was going to hurt next time. After I had calmed down a little a decided to have a go myself..."sod it!" I thought, I know where it hurts and where it doesn't. Ha I got it down first time!!!! The nurses were a bit shocked initially but they said it was fine and I now have the feed back up and running and have saved the Dr a job lol.
Have had a lonely day today, I didn't get much sleep last night so have spent most of the day dozing on and off. Everyone at home is still poorly with the flu so no visitors today or tomorrow. At least I have my laptop to occupy some of my time!

xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
20th December 2010
48.3kg

The HIDA scan result came back today.....you can probably guess....yup....clear! Looks like the PEG is looming ever closer. I was hoping that they would find something that could easily be fixed but it looks like that's not going to happen. I made a promise to my husband, that if they couldn't find anything new on the scans and the diagnosis was indeed functional vomiting and postprandial distress that I would opt to have the PEG so that I don't have to keep coming in and out of hospital. I guess it will be a long discussion with the consultant tomorrow, to try and find some middle ground and talk about where we go from here. I have one test left, the gastric emptying test. It is the one i've been trying to avoid. For all the other tests I have researched them on the internet first so I knew what to expect but this one I don"t really think I want to know! It sounds bad enough and I don't want to wind myself up over it so best not to know I think! I still don't have a date for it yet so i'll let you know as soon as I do.
On the positive side I have gained weight again so at least one thing is going right for me!

xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
21st December 2010
48.1kg

Had a bad night last night. I couldn't sleep so spent most of the night crying into my pillow. All I want is an answer!
I've spoken to the patient experience team about changing consultants and told them how things have been over the last few months. I've told them I don't want to carry on seeing my consultant when I leave hospital because he has done absolutely nothing since I came out the last time. Hopefully they will be able to help me find a new consultant to take over! Apart from that, I've slept for most of the day, haven't seen the Dr so no more news today folks.

xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
23rd December 2010
48.75kg

What a bloody nightmare! My hospital consultant is having some time off over the next few weeks. Guess who will be taking over....yup, my usual consultant! Couldn't have asked for a worse situation! It has put my back on a low, and just before christmas too! The last thing I need is that waste of space coming to see me, so much for changing consultants! Anyway I'm not going to think about it any more until I come back after christmas. There's not much I can do about it so we will just have to wait and see what he says.
I'm looking forward to a few days at home with my lovely family and some cosy nights in my own bed...it feels like i'm going on holiday lol.
Merry christmas everyone xxxx

xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
28th December 2010

I had a lovely christmas at home with the family. My beautiful daughter said that it was the best christmas ever because her mummy got to come home...how sweet is that!
I'm back in hospital now and the feeding tube is up and running again. During my few days at home I finally got a letter from the joint hypermobility specialist to make an appointment. We are going to try and get an appointment with the neuro gastroenterologist on the same day to try and save us two trips down to London. I'm still waiting to hear about the gastric emptying test. I'm not sure when I will see a Dr next so cant tell you much more today. I am feeling much brighter though, a few days at home did me the world of good! It's amazing what a few cuddles and a good nights sleep can do!

xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
29th December 2010

GIVE ME A BREAK! Guess who came to see me this morning? Hmmm my consultant, I thought I'd try and break the ice a bit by asking if he had a nice christmas. It was too much to expect a civil reply, he just dismissed me completely. I really dislike that man intently!
When he did decide to speak to me it was only to bully me into having the PEG again. He is so frustrating. He basically said that all the tests were ok just as he had said they would be, and it has confirmed that he was "right in the first place."and the diagnosis is functional vomiting. I told him that I would be going to see the rheumatologist soon but he seemed to dismiss that too. He said he would put me on the list for a PEG in roughly 4 weeks time. He then went on to say that if I did manage to keep the weight, he would move the date back a few more weeks until I start losing weight. That way I would be higher up the list if the supplements weren't enough.
To me it doesn't seem like the best option. I would rather they found the right balance of medication, and look for a solution. I want to get back to enjoying food, not to be sustained artificially.
He has never discussed the risks or consequences of having a PEG or how it might affect my day to day life. I think this is the most important issue to any patient, and I should not have to fight for an explanation all the time!



No comments:

Post a Comment

Hi please post comments below, I love to hear from my readers so don't be shy X