Crohn's Disease Forum » Support Forum » Undiagnosed Club » Newbie but suffered for 18yrs!

08-08-2013, 11:01 AM   #1
Sooz's Avatar
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Newbie but suffered for 18yrs!

Hi All
I'm new to the site but have been reading a lot of your posts and have every sympathy with all of you.
I'm 31 but my problems started when I was 13, I had a really nasty tummy bug and my stomach never recovered, I got so ill I had a whole year of school and my weight plummeted to under 6 stone, I looked like a skeleton. My Dr being the useless man he is decided to send me to a child phsycologist instead of a Gastroenterologist, so for more than a year I got no help at all, many many years later my Doctor apologised for not getting me help as he thought I was anorexic rather than physically ill!
Anyway they eventually sent me for tests and the GI said I had mild ulcerative colitis and gave me some tablets which unfrtunately I couldnt take as I couldn't swallow them. We went back to my Dr who said that the GI didn't say I had ulcerative colitis and that all my results were normal, he gave me immodium tablets and pretty much told me to get on with it. Fortunately I had a couple of years of remission, then another bad year, then a few more years of remission. When I got to my last year of college it got really bad again and I had to miss the whole last year, again my Dr just said it's bad IBS and you have to live with it and offered me Prozac to help with my anxiety, I was anxious because I had an uncontrollable bowel not an anxiety disorder!!

Fast forwards a few years to age 29, things had settled down but then 3yrs ago everything changed. It started off with what I thought was indigestion, it was awful though as it just wouldn't go away and my stomach was burning and I had the most awful taste that seemed to be coming from my stomach, not acid, nothing came up but it tasted like rotten food, like the vapour of it was coming up from my stomach. I went to the Doctor and they gave me a PPI which helped. Then just 3 weeks later I started passing mucus, literally just pure mucus and it was constant, just wouldnt stop and the pain was excruiciating. The worst part of it was that I was on holiday when it started, I stayed in our accomodation not daring to leave for 4 days, eventually I went to the hospital and they gave me steroids so that I could at least get home as I'd become housebound by it. It eventually settled after 2 days on the steroids and when I got home I went back to see my Doctor who referred me to a GI. 3 months later I got an appt and they sent me for a flexi sigmoidoscopy where everything was found to be normal (I wasn't surprised as by then I was having no symptoms at all), a month later it all kicked off again, 2 weeks being stuck at home unable to leave because I was continuously passing mucus and then this time blood, my doctor prescribed me steroids again as they'd worked the first time and agagin after a week it started to clear up. I asked for a second opinion and they sent me to another GI who has been my saviour. On top of the mucus I have been suffering terrible gastritis to the point where I haven't even been able to eat, my GI performed a Gastroscopy and said I had really bad gastritis that you would expect to see in an alcoholic who smoked 60 a day. I was tested for Reflux (negative) and H Pylori (negative) so the GI can only assume it is auto immune. My colonoscopy showed reddened patches which looked like inflammation but the biopsies came back normal.

Over the past year my GI has given me steroids to help the Gastritis and my bowel as they are the only things that work but obviously I can't keep taking them because of the damage they do so he suggested trying an immuno suppressent Aziothropine. I said I didn't really want to take toxic drugs until I had a definitive diagnosis to which he replied, 'we may never get one all we can do is treat your symptoms as best we can'. I've just had another gastroscopy and colonoscopy which showed Gastritis again but the bowel appeared normal, am still awaiting the biopsy results but i'm just sooooo fed up with it, I don't feel like I have a life, like I'm existing rather than living. I know there is something wrong, you don't pass blood and mucus for no reason and the extent of my gastritis is not normal for someone who doesn't drink, eats really bland foods and only drinks water! I often wonder if the Gastritis in my stomach is in fact crohns instead. Does any of this ring true with anyone else?

Sorry for the essay tried to keep it brief but there is 18yrs worth of it!
08-08-2013, 11:20 AM   #2
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scottsma's Avatar
Join Date: Jan 2012
Location: Tynemouth, United Kingdom

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Hello Sooz,and welcome to the forum.What an awful time you've had sweetheart.This is a great forum to belong to and you'll get lots of support and advice.Do you have support at home also ?.I do hope so.Your post will help a lot of people also going through the same sort of thing.IBD is a difficult disease to diagnose,as everyone can have different symptoms,so sadly it's not unusual for some people to go undiagnosed for years.Also many GPs have no idea about bowel disease.I'm sure you'll get lots of response to your interesting and sad post.Best wishes and I hope today is a GOOD day for you.
08-08-2013, 12:57 PM   #3
tillylala's Avatar
Join Date: Aug 2013
Location: Northumberland, UK

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Welcome, I am newly diagnosed and new to this site. It's been invaluable so far!!!
I had a perianal abscess 10 year ago, 3 surgeries, and was never given a diagnosis.
10 years later, stint in hosp and intensive care, and I have my diagnosis. So I had I'VE steroids, then prednisolone, and then Azathioprine, and I am feeling slightly more human.
I also agree that GPs know VERY little about Crohn's. (well mine anyway)
So ask any questions you wish, there will always b someone who knows the answer.
Take care.x
08-08-2013, 03:23 PM   #4
Sooz's Avatar
Join Date: Jul 2013
Location: United Kingdom

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The thing is I start to wonder if I'm actually going mad and that maybe it is just Gastritis and IBS but then how can I have Gastritis so bad when I literally live on rice, chicken, crackers, porridge and potatoes. Every kind of food seems to upset my stomach and for the last 3yrs I've literally been living on these safe foods just so that I can function enough to go to work and be able to leave the house. I also think well surely how can it be just IBS when I was passing mucus and blood. The pain and urgency were indescribable, I'd be 3 metres from the bathroom and scared I wouldn't make it. Fortunately I've only ever had 3 of these type of attacks but they've lasted over a week until I took steroids. The rest of the time it's just constant upset stomachs and loose stools and stomach pain. There are intermittent periods where one end of my stomach will be behaving but the other end will then kick off, I never get a break from it. Does anyone else have these symptoms with the gastritis and bowel problems. I mean when my bowel is bad I can take Imodium and it won't do a thing, it's really got a mind of its own!

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