Ulcers in my J Pouch

Happy Cakes posted:

My question: I had a pouchscopy recently and showed several small ulcers.  Do ulcers in my J- pouch mean my diagnosis changes from Ulcerative Colitis to Chrones?

Answer is it doesn't matter.  It's either pouchitis or Crohn's and both are typically treated exactly the same.  Worry about how to treat it, not what to call it, and you will do yourself a really, really great favor.  If you can treat it, the sky ain't falling.

By the way, I have had ulcers in my J Pouch for 25 years, and I can post some pics of what they look like if you would like to see them.  I have had multiple diagnoses but which one is correct doesn't matter because I have successfully treated it and I don't give a rat's ass what it really is.  I just call it inflammation.  

When my pouchitis was untreated it caused plenty of ulcers. Now that it’s under control there are no ulcers.

That’s all good and dandy CT bUt some people need a classification for many purposes. Hell, do you believe I would have been accepted for Remicade if my surgeon claimed I just have inflammation? I would not have. The Crohns diagnosis clinched it for me, as I had only pouchitis 3 times prior and that wouldn’t have been enough to consider it chronic. There was a member in here not long ago who couldn’t get on a biologic because their surgeon wasn’t sure if it was Crohns or just inflammation. A diagnosis key to getting on the correct medications, as everyone with IBD would know. They don’t just put you on whatever anymore 

Happy Cakes posted:

Hi,

I had a total colectomy with J pouch in 2002 due to chronic Ulcerstive Colitis.  No significant problems until recently. I was diagnosed with vasculitis 2 years ago and seems my life has unraveled. I have had digestion issues, low Fodmap diet, etc.

My question: I had a pouchscopy recently and showed several small ulcers.  Do ulcers in my J- pouch mean my diagnosis changes from Ulcerative Colitis to Chrones?

The answer to that is with your surgeon/GI. You can have ulcers in the pouch and not have Crohns. Mainly though, this is a question for your surgeon. 

I am on Remicade without any definitive diagnosis so I have no clue what you are talking about.  I have had 4 diagnoses and have been flat told it's unknown what my real diagnosis is.  I think you have been listening too much to people who want you to think they are certain (and are succeeding brilliantly), while I have been dealing with people who are shooting straight and telling me they don't know for certain.  Because I ask them the right questions. The OP doesn't care about what someone is arbitrarily and even fictitiously writing on a piece of paper so he can get a medication - and most people don't.  He wants to know the truth.  

I live in Canada where it is publicly funded. If you fit the criteria here, then you get the funding for the medication. I suspect it’s different where you are, where money or personal insurance are the only road blocks to getting on certain medications. 

All right CT, are you trying to say my GI doesn’t know how to do his job and only yours does because they gave me a “fictitious” diagnosis and they couldn’t give you a diagnosis? Do you want my diagnosis? I have ulcers in 3 separate places in my small intestine and I throw up every day because of the pain. You can have it. 

What I said was my doctor told me he writes something down on a paper so he can get the medication I need.  He DOES NOT KNOW my diagnosis nor did my prior GI and they are/were two of the best J Pouch specialists in CT and NY (my prior GI trained with Dr. Shen at Cleveland Clinic who is the best J Pouch doctor in the USA).  Period.  That is called a fiction and arbitrariness.  But I also understand it because he has a duty of loyalty to his patient to get the patient the best treatment possible because of the Hippocratic Oath he has taken, just like I have the same duty to my clients.  GI doctors all over do this for their patients and I am just calling a spade a spade, nothing more nor less.  The OP is in the USA (Michigan per his profile), not Canada, so I do not think your posts on the matter are of much help to answering his question.

I go back to my original point which is that what to call it does not matter. How to treat it is what matters and the treatments are the same for ulcers in the pouch and above the pouch regardless of what you want to call it.  In my case the treatments work.  Patients who are more obsessed with a proper "label" rather than proper treatment can get sidetracked into spending a lot of money on very unconstructive endeavors that enrich radiologists and pathologists but do not help solve the problem - at all.  Fortunately I am treating with doctors who know everything I posted above is true and if I showed Dr. O or Dr. B this post they would verify everything I have said as accurate. 

I have ulcers in my jpouch all the time w no Crohns  diagnosis. As CTbarrister indicated, they refer to it as inflammation.  If you are feeling that ill they should be able to prescribe a medication to help. 

Thank you everyone for your thoughts!