My story... Diagnosed with UC in 2008 and now 'IBD Unknown'

Hi, I discovered this forum a week ago and have found it really interesting and helpful so I decided to introduce myself and tell my boring story! :ylol:

I was diagnosed with ulcerative colitis in 2008 when I was 17 and at college. I started with stomach cramps and diarrhea which gradually got worse and worse with some mucus and blood. I made a couple of visits to my GP who fobbed me off a bit and did a couple of blood tests and took a stool sample to rule out food poisoning, but they never seemed in a hurry to take any further action until it got to the point where I was on the toilet constantly and just passing pure blood. I made another appointment but I was so weak and tired I could barely take the 5 minute walk up the road to the doctors (I also had severely swollen joints which didn't help, and at the time I had no idea would be related to IBD) and was immediately admitted to hospital, where I stayed for 5 days and had a flex sigmoidoscopy to diagnose UC. I was put on prednisolone for 3 months on a gradually reducing dose, which made me feel better and put me in remission within 1 week. I didn't realise how bad the 'moon face' was until I looked back on photos of myself a few months after!!

Since then, I have been extremely lucky and up until this year I had only had 1 minor flare up (which was fixed by 2 weeks on prednisolone) and could live a completely normal life, just taking 6 x mezalasine a day to keep me in remission.
...Up until a couple of months ago, I went out for a curry with my boyfriend and decided to try something new... chicken livers! Little did I know it was going to be one of the worst mistakes ever. We were both ill with diarrhea and stomach cramps 2 days later, and with my UC being a thing of the past, I wasn't too worried and thought it would pass. A few days later I went to my GP who took a stool sample to test for campylobacter food poisoning. After a week the symptoms were getting worse and I was in tears every day to my boyfriend feeling so week because I couldn't eat a digestive biscuit without feeling like someone was stabbing me in the bowel and starting to pass blood when I went to the loo. He ended up driving me to A&E, where they confirmed the test results were positive for campylobacter and it had flared up my UC. I was put back on prednisolone for 6 weeks and 2 weeks later had another flexible sigmoidoscopy (how naive I was to think I would never have to go through that again!)

The pred worked its magic and I started to feel normal again, and relieved that it was all over. A week after my sigmoidoscopy I had a follow up appointment at my IBD clinic, where I thought I would just be having a general chat with one of the consultants and would be told that everything looked fine. However, the consultant informed me that they are in discussion on whether I have colitis or another form of IBD. He said that they were going to book me in for a full colonoscopy because during both sigmoidoscopies, they have seen ulceration from my rectum right up to my descending colon and beyond. So they cannot give me a full diagnosis because they simply haven't looked far enough. So I could well have crohns or colitis, he called it 'IBD unknown'. I feel quite annoyed that they didn't do a full colonoscopy the second time, because now I have to go back and go through it all again ale: and I'm all confused as to what I actually have.
Anyway, I've just finished my prednisolone this weekend so fingers crossed I'll be in remission for a while again! So relieved to be off them, I might actually be able to sleep and lose some weight now!!
Has anyone else gone through this with the diagnosis confusion? And has anyone ever had food poisoning lead to a flare up of IBD?
Sorry about the horrendously long post!!

Don't be sorry about anything. We all have been through some of the things you have been through.

I sure hope you feel better soon. I know that its no fun being sick..

Jim (POPS)

Hi graceymay (love the name).

My little Grace is in a similar boat. Her GI is thinking early on-set of IBD.
Until he see's the "proof" in biopsies he's calling it Colitis.
Sorry you have to go through another scope. My girl Grace sends her sympathy.

HUGS and welcome to the forum.

Welcome to the forum graceymay!

I think it's a bit curious that 5-asa has been so effective for you for several years, and it is more often a drug used for ulcerative colitis, but your doctor is thinking its not colitis - or not just colitis? My understanding is that 5-asa is absorbed only in the colon.

I've had a test called Prometheus sgi diagnostic which is good at differentiating patterns associated with CD vs UC based on blood marker/antibodies, genetics, and inflammatory markers. There is one antibody in particular that is common in UC and very uncommon in Crohns; positive pANCA with negative ASCA. (In Crohns it's often the other way around) perhaps this could be helpful for your doctor feeling comfortable with a UC diagnosis (if that's what the test also says) without having to do a colonoscopy.

Hi there GracieMay

Welcome. Sorry you have to join our not so little group. couple of thoughts (that's about my limit at one sitting). First off.. the doctors now suspecting it isn't colitis, or just ulcerative colitis.. might in fact be a silver lining. if they had stuck with a diagnosis of UC... and suggested surgery to correct same.. and it turned out it wasn't, or wasn't just.. then the surgery might have turned UC/CC to CD. If it was Ulcerative Colitis, and the colon is removed (a very drastic solution, but a solution) then the problem is solved. But, if it is both Ulcerative AND Crohns Colitis, and the colon is removed, there is a chance the Crohns will return.. above the colon, resulting in Crohns Disease. Hate to put it that way. Don't mean to alarm you, but forewarned is forearmed. So, these doctors who are 'rethinking' the original diagnosis are actually on the ball. And, having both, tho rare (I have... well, had .. both... and I've kept both under total control over 5 years now). Second thought.. I am so impressed with me that I managed more than one.. the fact that they didn't go further in prior scopes.. may not have been an oversight on their part. It may have been that the inflamation was so bad, they couldn't risk going any higher. If your ileo-secal (probably mis-spelled that bit of anatomy) was inflamed too badly, trying to push thru to see above the colon might have risked perforation. So, it might have been simply they were forced to take a less agressive approach last time. Scoping is a nuisance, but unfortunately.. getting a visual of what is going on in there is the best idea. They need to be sure what you have, and how extensive/aggressive it is, before tossing any potential solutions.. especially surgical ones, at you. I've had some surgeries.. they really aren't that bad (at least in my personal experience) but they should be a last resort, and you need to be sure that the diagnosis is accurate.

Not sure if these thoughts are a comfort, or if I've just added to your fear/confusion, but a look, or a 2nd, 3rd, 4th look... is always better than a wrong diagnosis or surgery that only makes matters worse. And, there are alternatives, you just need to find them.

Thanks a lot for the replies! Lustforlfe - that's a good point about the blood test, when I went for my follow up appointment I had some done and the consultant mentioned that they were going to test for something specific that meant my medication could change? I dunno if it was that that you were referring to, but I haven't heard anything back yet.
Kev - I think that was definitely the case with the sigmoidoscopy, I'm worried about the full colonoscopy because of the prep I'm hoping it doesn't cause me to flare up. Another question I had was, by the time I get booked in for the scope I should well be in remission by then, so surely there's not much they will be able to see up there?!

Sorry to hear about your current situation. People with ulcerative colitis and crohns are more susceptible to getting GI infections like campylobacter. But seeing your boyfriend also got ill proves that anyone probably would have caught it from the food. Any severe GI disturbance like that can set off a bad flare up. Even a stomach flu can set off a bad flare up. So hopefully after you put this round into remission you will not have another major flare up.

I myself have been diagnosed with Ulcerative colitis / crohns ( they were never real sure but leaned towards ulcerative colitis ) for more than a couple years. Found out recently after being in the hospital it was salmonella and a strain of salmonella I caught back in 2009 which I got meds to get rid of it. Obviously the medication didn't kill all of it and I have been suffering with flare ups here and there caused by my initial salmonella infection back in late 2009. I was recently put into the hospital because of it where they found it. BUT I HAD SEVERAL FECAL SAMPLES THAT ALL CAME BACK NEGATIVE TIME AFTER TIME. It wasn't until they did a specific test they found it. My symptoms during my severe salmonella infectious colitis flare up were identical to yours. Severe cramping and pain, bloody watery stool, hardly urinating due to my intestines unable to absorb water, joint pain and swelling, malnutrition. I also had C-Diff a couple years ago and that was most likely cause of my salmonella infection. They said it colonized in my intestines and it will flourish sometimes and cause sores in the intestine. It looks just like ulcerative colitis or crohns too when they see it with a colonoscopy. If they take a biopsy of your affected during the colonoscopy they will find if you have any left over infectious bacteria strains.

For me they are still not sure if I have IBD or if it was just the salmonella. I'm on my way to getting better but the future will tell if I have IBD or not. If I don't get any future flare ups it's probably safe to say it was just the GI infection. I'm still having issues though and all of the salmonella in my system should be long dead but my intestines probably need another month or two to completely repair.