Please help - undiagnosed - or diagnosed with "complex functional disease".

[pennyrose84]

Hi everybody

I'm sure you have read this type of post a thousand times so I am sorry, I'm just at a loss at what to do.

I'm based in UK. I started having some gut issues in 2010. In February/ March of that year I started experiencing some diarrhea, fatigue and small weight loss. The GP did some blood tests and noticed I had a high CRP/ Inflammatory marker. From that he thought I had some form of IBD. He referred me to the hospital for a colonoscopy. Due to the waitlist I didn't have one until the end of May and by then was much better. It came back negative and never pursued anything further as I was ok.

Fast forward almost exactly 2 years. April 2012 I lost my appetite and started getting mouth ulcers. I had loose stools and was going a few times a day (I only go once like clockwork). The diarrhea wasn't a big issue, just pain when or after eating. I lost 10lbs in 2 weeks so went to doctor. This time he thought it was gallstones. Test comes back fine. Then he thinks it's a stomach ulcer so he gives me PPI's. I had an endoscopy in August and no stomach ulcer found, just some inflammation.

By this point I move GP's because I've lost 3 stone and feel horrendous. My new GP discovers I have a B12 deficiency and hashimoto's thyroiditis. They refer me to a gastroenterologist who I see in the October and by this point I'm eating again and gaining weight. He does a colonoscopy and stool test which is all fine.

Last March I notice I have a small anal fissure so go to GP for some cream - I also notice something really alarming. I am breaking wind through my vagina (sorry, TMI). I know sometimes after intercourse this can happen but this isn't after sex. This is lying down in bed at night. I had absolutely no idea what this is so I raise this (very sheepishly) with my GP. He is absolutely bamboozled because he says it must be a fistula but I don't have IBD and I've never had children. Go back to gastro man who orders an MRI which shows nothing. He then says my problem isn't organic but functional and I should discover which foods trigger it.

I was in disbelieve with this. My sister has IBS and one of my good friends and my symptoms/problems seemed to be nothing like this. But everyone is different so I try and accept this and move on. With regards to diet I eat really well and it was easy for me to check which foods were bad for me but other than onions repeating on me I can tolerate everything.

So fast forward once more to today. Almost 4 years from my first problem I am struggling to eat food again. I feel full very quickly and have had started to have quite severe diarrhea 2 weeks ago. I thought it was a tummy bug but the diarrhea has now passed but I am still passing quite loose stools at least 4 times a day. My stomach is bloated, I still have the gas problem and I have painful cramp.

Is this just a functional disease? The reason I'm sceptical is mainly because nothing seems to trigger it and it seems to happen at the same time every 2 years! I am really hoping that this is just a bug because I cant imagine how you amazing people cope with this day in day out.

Any advice, hints, tips, giving me a reality check that would be amazing.

Thank you all so much x

 

[Madmouse]

Hi Penny,

I'm sorry to hear that you are having so many problems. I'm afraid that I can't offer much advice, but I wanted to reply to you and let you know that you are not alone.

I have been told 'its just IBS' more times than I care to remember. I have epigastric and generalised abdo pain, did have persistent diarrhoea (which resolved post prednisolone treatment), nausea+, lack of appetite, fatigue, muscle pains, and when it gets very bad, vomiting after everything - both food and fluids make my symptoms worse. I have had pretty much every test, and the vast majority of which have come back as normal or so close to normal its being considered normal (only thing that has ever come up is some raised inflammatory markers in an acute exacerbation, but not during low level symptoms). I was lucky enough to find a gastro consultant (during a hosp admission last year) who listened to me as a patient and not just tell me that all my tests are fine. He is treating me for ilietis and the treatment (pred then azathioprine now mercaptopurine, mesalazine, amitriptyline, buscopan, esomeprasole, ondansetron and metoclopramide) is helping - it has been tweeked and is not perfect, but it has allowed me to begin to return to work and meet friends.

In my experience there is nothing more frustrating than negative, especially multiple negative, test results and continuingly being told that everything looks fine. It is not that I (or anyone) would want a positive result and diagnosis of something, but negative results do not take away symptoms and dismissive doctors (GPs and specialists) are incredibly frustrating. I am incredibly lucky that I have found a great gastro consultant whose attitude of 'lets treat the symptoms and the patient' has been a life saver - but even with that its not plain sailing - recent hospital admission and my normal consultant wasnt available, and I have found myself battling again.

The best advice I can give you is keep going, try and stay strong (easier said than done I know), and keep at your Drs until you get help. I have tried a low FODMAP diet and it hasnt helped - whilst it is a pain to do, it has helped many people so speak to your dr about a dietician referal (dont try it on your own). Keep a diary of symptoms - it will allow you to see any patterns and keep tabs on your symptoms. Try not to isolate yourself from friends - this is very easy when you cannot go out due to illness - and talk to them about what you are going through - not only will it help them understand but it gives you a chance to discuss it with someone other than your inner self.

I hope you get some answers soon - and more importantly some treatment that helps - IBS or IBD, whilst it is important to know what the cause is, treatment is just as critical - at the end of the day its symptoms that interfere with life, no the name of the cause!

All the best (and sorry for the long waffly post!)