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Ulcerative Colitis
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Posted 2/5/2016 9:57 AM (GMT 0)
Hello all!

Me again!

Ok, so following on from my last appointment with my GI, it's been decided I had acute pancreatitis as a result of the azothioprine, and a case of hepatitis caused by the same (My LFTs were going up and up!), sp I'm now having weekly bloods and have my next appointment on 17th Feb, when it will be decided whether I start on mercaptopurine or go down the biological route..

Thing is, the GI sadi to me at my last appointment that I DEFINITELY have UC, yet the later states my diagnosis as IBD undetermined, and he has written at the end that he believes it is most likely I have colonic Crohn's (which I gather is Crohn's colitis?), with some perianal involvement.

I also have a 'trans-sphincteric fistula anteriorly with an internal opening'.. Joy!

So, my diagnosis history has gone like this;
Jan 2013 - constipation
Feb 2013 - UC
Sept 2013 - Crohn's
Jan 2014 - Def. UC
Mar 2014 - Maybe UC
Nov 2014 - UC
Jan 2015 - UC maybe Crohn's
Mar 2015 - Crohn's maybe UC
Sept 2015 - Maybe UC
Dec 2015 - Maybe UC
Jan 2016 - Def UC
Feb 2016 - Possibly Crohn's colitis

I don't know if I'm coming or going!!!!

Maybe I should just stop going to appointments and pretend there's nothing wrong!!

Anyone else been through this sort of thing? I think he's suggesting CC because of the patchy nature of my colon - am I right in thinking UC is continuous rather than patchy throughout the colon?

:-)
Posted 2/5/2016 2:17 PM (GMT 0)
Wow that's frustrating. Yes, UC is continuous starting at the rectum and spreads upward. Crohn's is patchy, with areas effected, areas not, followed by areas effected.

Have the biopsies been consistently uc? Uc biopsies show shallow tissue damage. Crohn's are deep tissue damage.
Posted 2/5/2016 2:27 PM (GMT 0)
I'd guess its the fistula this time that's changed the diagnosis. I have one too. Fun times.
Posted 2/5/2016 3:38 PM (GMT 0)
aimz- Diagnosis history you mentioned above are they all by same GI? Was colonoscopy/biopsy done every single time before he/she made diagnosis? If not I would ask him/her why there is discrepancy and ask for copy of biopsy results?
I feel I have good GI however report he sends to my family doctor some time is little different/uncertain than what I was told or done. I wonder this is to protect them form any liability?
I am not sure if I am helpful to you but can you tell me how long have you been on Imuran?
Posted 2/5/2016 6:03 PM (GMT 0)
Crohn's colitis can mimic UC with a continuous nature, but yours has not from the sound of it.

Is the hepatitis you were diagnosed with autoimmune?

You've been throuh a hell experience already regarding diasnosis and med related organ crisis. I don't know much about biologics and ilk, but that seems your option at this point would be to seek that route.

q
Posted 2/8/2016 12:01 PM (GMT 0)
Dear All,

Thank you for your replies -

iPoop; My biopsy results have never really been discussed, I guess they've been inconclusive or just glanced over and deemed of little importance - but I will ask next week!

Uniform Charlie; I had a peri-anal abscess surgically drained in 2002, which resulted in a fistula followed by a fistulectomy in 2013, which is why they initially queried the diagnosis of UC, the GI I saw was going to ask the radiographer if it was an old tract from that or a new one.. I hope it's not new! You have my sympathies!

UCMas; I unfortunately seem to see a different GI at each appointment, as it's an NHS clinic so you kind of just see whoever is free first - not great! I've only had 2 flexi-sigs and one full scope since being diagnosed, so a lot of the chopping and changing depends on how I react to meds seemingly! I was on Imuran for 4 weeks before my first pancreatitis flare, but that wasn't linked at the time, I was on it I guess for around 9 weeks when my second flare hit and I stopped taking them myself - no one at this point had linked the pain to the imuran, but the GI I saw said it should have been obvious to any medical professional examining me.. ah well!

quincy; The GI I saw last diagnosed the hepatitis because of my LFT results, which were still going up (I haven't seen any of my blood results since then), he believed it to be caused by the imuran, so hopefully that will have subsided by now. I'm not sure what path to ask to go down - I guess biologics but he has the other pill he wants me to try first... :-/

It's hard to know what to do, I'm on Olsalazine as an interim at the moment, and have some mucus, some very bright red blood (so not too worried!) and quite a gurgly tummy, I'm lost as to which direction to go in!
Posted 2/8/2016 4:44 PM (GMT 0)
I would go the biologics route if your symptoms are bad enough to warrant their use: remicade, humira, simponi or entvyio. There's a fair number of us on humira or remicade with good results. The other biologics are newer and less common. What warrants going on a biologic medication varies a lot by person, for me I was steroid-dependent at 20mgs, 4-6 crazy urgent bms a day with multiple accidents per month. Others go biologics with less. Most won't take biologics unless their symptoms are bad.

It might be frustrating to not know which form of IBD you have, but the treatments are nearly identical. If you want to investigate your case more, then I'd ask for copies of the various biopsy and scope results you've been given. They'd be beneficial for you, to share with us here, or any doctor you might see as a second opinion in determining exactly what you have.
Posted 2/8/2016 9:45 PM (GMT 0)
Well there is definitely IBD. I do not think the doc would have said "definitely UC" and "Maybe Chrons Colitis" in the same report. Likely you misunderstood, or he/she used poor phrasing.

For example the doc could have said "your colon is definitely ulcerated", but "maybe it is Chrons Colitis".

... or maybe even said definitely colitis, which is not the same as UC.

While the patchy vs continuous is a visual distinction between UC and CD, it is not perfect. The biopsies are generally more accurate. If the ulcerations are shallow, it is likely UC, and if they go deeper into the tissue, it is likely CD.

You need to ask to have you biopsy results explained.

However, treatment for UC vs CD is largely the same. Some biologics do work better for one or the other, so clarification would be useful.

Good luck.
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