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Unexpected Scope Results for my J-pouch

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Ulcerative Colitis
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Posted 1/11/2019 3:16 PM (GMT 0)
Hello All,

I've had the dreaded chronic pouchitis since the first day; antibiotics helped but I finally moved on to Stelara when there were ulcers in my j-pouch and above the pouch in my small intestine (the inlet to my pouch) during my previous scope. I've been on Stelara for almost 3 years.

So I went for a routine scope yesterday and I expected to have ulcers or inflammation in my pouch. To my surprise, my GI said that I had no inflammation or ulcers and in fact that I had the best looking pouch that he has ever seen. smile He said that in any j-pouch that you look at under a scope you will see very minimal inflammation(even in healthy pouches) -- I had no inflammation whatsoever. He was shocked and said that he should have taken more photos (in retrospect).

I wouldn't have believed all of this except that I have photos when I had ulcers in my pouch and yesterday's photos.

Thanks Stelara. He wants me to continue on Stelara.
Posted 1/11/2019 3:32 PM (GMT 0)
Congrats! Good to know Stelara is working. How are your symptoms and how have you been feeling?
Posted 1/11/2019 4:15 PM (GMT 0)
iPoop,

I don't have any real symptoms besides inconsistent output consistency; some days liquids and other days solid output.

I go like clockwork three times a day, once in the morning when I wake up, end of my work day (or when I get home) and then once before bed.

I'm usually tired (could be the stelara) but I've always been a horrible sleeper. I should go for a sleep study sometime soon.
Posted 1/13/2019 5:41 PM (GMT 0)
Congrats Keith! Great news! Also thanks for continuing here and contributing your hard-won knowledge to help others.
Posted 1/13/2019 7:01 PM (GMT 0)
I am so happy for you Keith. You deserve some good luck & thank you for always being here to help others. Your input has been so valuable to so many people smile
Posted 1/14/2019 6:39 PM (GMT 0)
NSSG,

I probably would have went on my way (like most j-pouchers) except for the fact that I have Chronic Pouchitis which everyone fears when they have surgery. I stick around to let everyone know that it really isn't that bad and they shouldn't put off surgery because of it. I am very happy with j-pouch. The surgeries aren't easy but manageable, I couldn't take living with UC any longer. Even with CD/chronic pouchitis it is completely different than living with UC.
Posted 1/15/2019 5:41 PM (GMT 0)
Thanks Keith for hanging around. I had a scope last week for my J-pouch as well but didn't get the good results you did. It seems I have significant inflammation and possibly Crohn's disease. The Dr. took several biopsies and I will see him in the office next week. I just wanted to say I appreciate your comments because I remember you saying that even with the J-Pouch issues it is better than living with UC. I would certainly agree with that statement. I am still way better off than before surgery.
Posted 1/15/2019 7:19 PM (GMT 0)
Buckeyecrohnie,

Sorry to hear your scope results; what meds are you taking to treat it? And are certain meds off the table due to the PSC? I had ulcers in my pouch and in the inlet to the pouch, my GI wrote it up as crohns so he could get me Stelara.

If you get the crohns dx then I'd recommend Stelara, it has worked really well for me. Almost instant results. I was able to discontinue it when I went for my hip surgery and started it back up 6 months later without developing any antibodies. I haven't had any side effects from the Stelara other then putting weight on because I am healthy again.

I really hated being on antibiotics even though they worked for me. I would constantly battle yeast infections and lethargy. If you are on them then start a thread and I can give you some pointers. I was on them constantly for almost 3 years.

Thank you for the kind words but I am just paying it forward. There is such a stigma about surgery and chronic pouchitis. Mine is not the optimal outcome but it is so much better than living with UC.
Posted 1/15/2019 8:53 PM (GMT 0)
Thanks for your reply Keith. I am not on anything yet; I have an appointment with my gastro late next week. I don't know if the PSC throws a wrench into it or not. My gastro dr. has a Jpouch too. It's nice he's able to understand the issues since he lives it too. I have had to take Immodium everyday since my surgeries and I am consistently at 8 to 10 times a day; which is way better than 35 times a day before the surgeries. I'll start a new thread if necessary after my appointment next week.

I have learned so much from the nice people on here and I appreciate it. Us IBD'ers have to stick together.
Posted 1/15/2019 9:23 PM (GMT 0)
Buckeye,

Pepto works pretty well for most j-pouchers. We use it during "antibiotic holidays" when we cycle off of antibiotics for 7-10 days. It's only a bandaid and obviously you'd need to check with your PSC doc.

I'm down to 3 times a day and very scheduled (as I stated above). I never have urgency when I am taking medications for the pouchitis.
Posted 1/18/2019 11:43 PM (GMT 0)
WOW, that's definitely an interesting scope result, Keith!!!!!!!! Here's hoping you're rid of the ulcers for good. I also want to thank you for continuing to post here on the forum because your many insights to our problems are very helpful and your positive attitude always inspires olde me! BTW, does Dr. S. scope at that E. 93rd St. center you cited? / Old Hat (38 yrs with left-sided UC; presently in remission taking brandname Colazal)
Posted 1/21/2019 5:33 PM (GMT 0)
OH,

Yes, it is the only place that Dr. S does scopes now. Really nice place, it looks like a hospital on the inside. He said they really upgraded all of these facility since Joan River’s death.

Thank you for your kind words.
Posted 1/22/2019 5:18 AM (GMT 0)
KS1905 that is amazing regarding the results of your scope. And I agree thank you for staying on this site. You give us hope that living with pouchitis or cuffitis is manageable. Will you continue to stay on the stelara?
Posted 1/22/2019 4:50 PM (GMT 0)
Valli,

I am to continue on Stelara. In fact I am due to order my next dosing this week. I was probably at the 5 week mark out when I had the scope out of my 8 week dosing of Stelara so I doubt stelara was working at it's full potential at the time.
Posted 1/25/2019 3:42 PM (GMT 0)
That is great new KS. Glad to hear the Stelara is working for you!! I look forward to your posts as you truly do help us since you've had issues and actually resolved them!! LOL
Posted 2/7/2019 4:10 PM (GMT 0)

buckeyecrohnie said...
Thanks for your reply Keith. I am not on anything yet; I have an appointment with my gastro late next week. I don't know if the PSC throws a wrench into it or not. My gastro dr. has a Jpouch too. It's nice he's able to understand the issues since he lives it too. I have had to take Immodium everyday since my surgeries and I am consistently at 8 to 10 times a day; which is way better than 35 times a day before the surgeries. I'll start a new thread if necessary after my appointment next week.

I have learned so much from the nice people on here and I appreciate it. Us IBD'ers have to stick together.

Buckeye,

I was just thinking about you. How did you appointment with the GI go? I know that your issues are more complex than mine. I didn’t see you post anything about it.
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