Hello All!

I'm going in for my pelvic MRI this afternoon, and have my colonoscopy on Friday morning, I'm doing the prep tomorrow afternoon (staying in a very nice hotel courtesy of my other half as I didn't have a good experience taking the prep when I was younger and had an awful accident - just a shame I can't take advantage of the yummy breakfast on offer!)

I've got three days left of Pred, and the Imuran seems to agree with me (though the skin in my mouth in peeling awfully - my doc seemed unsure what this was!), I do get quite nauseas around 45 minutes to an hour after taking it, but that passes after an hour or so (I do take it after my evening meal).

Despite every other level being normal my CRP is still 'worryingly high', though I don't have the numbers so I'm not sure how high is worryingly! I hope they find 'something', I am incredibly bloated, my temperature is up 1* constantly, and I'm shattered (being woken up my abdo' cramps for the last week or so), so I really want them to say "Right, we thought it was proctosigmoiditis but actually it's slightly more progressed so we're going to try.....", there has to be a reason nothing works long-term (beyond 3 months!). Though this is my first colonoscopy in 13 years, I've only had flexi-sigs since being diagnosed, so perhaps they'll discover something different altogether!

I shall keep you posted - doubt I'll get any results this year!

If I don't post in the meantime - Merry Christmas / Happy Holidays!!

Hope all goes well!
Merry Christmas / New Year!
q

Best of luck for tomorrow, let us know how you get on!

Hello all and many thanks for your well wishes!

I don't have any MRI results yet and won't have until the new year.. The scope on the other hand...

Well, apparently there is NO SIGN of colitis, active or otherwise, or crohns. There is some 'patchy loss of vascular pattern in the rectum but no clear evidence of UC'.. So - where do I go from there? Ill tell you - A&E at 4am on Sunday morning. In agony, writhing around on the floor, only morphine took the pain away! Long story short, I vomited violently Friday and Saturday nights, then was awoken at 11pm Saturday night with the worst pain I have ever felt, quite central and just under my ribs. It would not go away, I was sick, had 2 very soft BMs, couldn't get comfortable, and ended up on the floor crying at 3am! The GI advised I go to A&E, so I did. I'm going for an ultrasound this morning at 9.40 - they think I might have gallstones! Joy!

As for the UC - I don't know... I'm seeing my GI in 4 weeks, and hopefully he can give me some answers!

well based on the fact that there is vascular loss than you must have had some damage there
is it possible you have colitis that can be observed at a microscopic levels?
because its patchy loss it may indicate crohns but its possible it was inflamed throughout and those are jsut locations of ulcerations.
but this is just a guess
a crp of 34 definitely indicates inflammation but the test is not gut specifc so it might not be IBD related
did they do fecal calprotectin? that might be more indicative
hopefully someone more experienced will come along and be able to give more advice

Blood red urine seems concerning UNLESS your doctor can explain it. Some meds can discolor it but otherwise you would need to see a urologist or nephrologist.
I would do so ASAP.

You need a few biopsy samples to confirm diagnosis. It's very tricky. Microscopic inflammation is not picked up by mre as far as I know.

Did they tell you where the ulcer was located?

Scary experience...I've never heard of a diagnosis via paramedic notes. I don't understand why there isn't an upper endoscopy to be done for proper diagnosis to see the extent of the stomach ulcer.

Did they at least put you on a PPI medication?

When are you seeing your GI next?

q

Quincy - thanks for your reply, I thought it was odd to be diagnosed from paramedic's notes, too.. I have some Omeprazole (one a day) to take for a month and 'See how I go'...
I'm seeing my GI on 20th January - next Wednesday - I'm revving myself up for it!

Dikid - Thank you, I'm actually in Oxford, UK, so kind of defined by our NHS as to where I can go! I see Professor Simon Travis at the John Radcliffe Hospital, which is supposed to be great, but I seem to have gone from 'who knows' when I first moved here from Kent, to 'Definitely UC' to 'clear results but funny bloods' to 'stomach ulcer' and I bet it goes back to 'who knows' before long. It's so frustrating and quite scary - I don't want to take myself to A&E because they are very good at making you think you're wasting their time, so I kind of feel like I have to hold out until the next 'attack' or I pass out, whichever comes first.

I will be pressing my GI to do something other than sign me over to my GP, and I will not be taking steroids again!

Azithioprine raised my LFT levels and as soon as I stopped taking it the levels went back to normal. Also, another risk of that drug is pancreatitis which can cause the agonizing pain you described. I don't know if that is something that can come & go, but my doctor warned me about it before I started taking aza and said if it happened I would know because the pain would be intense. Did they do any tests to rule that out?

Hi CCinPA, no they've done no tests.. My LFTs were raised before and I'm having another test tomorrow.. The pain was awful, but no one has suggested it - perhaps I should bring it up!

Dikid - I've heard of the NHS paying for sunshine holidays for arthritis sufferers, so who knows!!

just checking in...

Request a copy of the results of all your tests for your records. You're not requesting your records...just copies of the test results.
q

Hello!

I had my appointment yesterday and saw a different GI - he was very good and listened properly which was great!

I have been officially, unquestionably been told I definitely have acute active ulcerative colitis, which is 'great'! Also, the MRI found a fistula, but the GI wants to confirm with the radiographer that it is new, rather than related to my previous surgery - I'm not experiencing any symptoms at all.

The pain that had me in hospital and paramedics out to me has been attributed to the azathioprine related acute pancreatitis, rather than pred related stomach ulcers, which should self-resolve.

My CRP is still raised at 34.1, and my LFT is up (which he thought was little weird) it was 113 on 21 Dec, and 159 on 15 Jan (I had stopped taking the Imuran on 29th Dec). Because of this he is delaying starting me on remicade, I have to have weekly blood tests until my LFTs are lower, and return to taking olsalazine in the meantime, just to cover me (though it's not enough to stop/control a flare unfortunately!).

So that's that.. Hopefully the fistula is an old problem that I don't need to worry about, and my liver gets better soon, then I can start the next medication and - fingers crossed - that will be my long term answer!

Thank you all for your support and words of wisdom - I'd be lost without this forum!