I'm not doing good

I'm sorry to hear that. I wonder if an anti inflammatory diet may help you.

It sounds like he’s thinking it’s ischemic pouchitis, which can be difficult to control. I’m very glad you have no significant symptoms! In that situation I’d demand a very clear explanation of the pros vs. the cons of surgery. I think I would also change surgeons (at least for a re-do) if my current one had failed to ensure an adequate blood supply to the pouch.

Scott why is it difficult to control? What are my options?

@Andreita the most obvious option is to do nothing, and that’s often how ischemic pouchitis is managed. You’re feeling well, and perhaps (in consultation with your doctor) you might decide that the trade offs of treatment aren’t worth it. Ischemic pouchitis is hard to treat because nothing but surgery can correct the reduced blood flow. It is sometimes treated with allopurinol (a medication usually used for gout), which can reduce the tendency for the tissue to become inflamed, but I suspect that most docs don’t know this.

I’d choose to manage this with a good gastroenterologist rather than a surgeon, at least until I decided that surgery was necessary. Heck, a second opinion could help you determine if you definitely have ischemic pouchitis or not - the diagnosis is sometimes tricky.

Your post was called “I’m not doing good,” but the fact that you’re feeling well is very important.

I didn't know how to spell it but he did mention ischemic. He's consulting with a surgeon

If I don't do anything what's the worst that can happen then?

If cipro helps can I be on it long term? I see others who do it on here. I don't want another surgery and jpouch redo. I think the issue will persist

Also I'm not doing good mentally and also I didn't except to have inflammation. I can hold it at night and such so yes symptom wise I thought I was doing good. I don't know what "normal" feels like with the jpouch yet you know? I'm scared and confused.

@Andreita posted:

If cipro helps can I be on it long term?

I was on cipro and 5-6 other antibiotics, continuously and in rotation, for 25 years, and they worked for a long time to maintain quality of life.  But unlike you, I needed them because I experienced the classic symptoms of pouchitis. By the way, Remicade eventually got me off antibiotics completely and completely cleared up the inflammation in my pouch.  The inflammation pattern was (from what I could see in my scope pics) somewhat irregular at the J Pouch outlet, but was never called ischemic pouchitis.  I would suggest you look at my pics below from back in 2012 and compare them to your pics.  Pic below is from 2012- does not look like this now.  Pretty irregular if you ask me, this one is the pouch outlet:

This one is the pouch inlet, where the inflammation was more regular in pattern.  This is also from 2012, gone now:

As a matter of interest, this is what gets you a Crohn's diagnosis although it's likely inflammation from backsplash stool in the neoterminal ileum, and doctors usually just call it Crohn's anyway:

Andrina, you should post your pics so we can all observe what you are talking about.  Those pics I posted above are from 2012 and digital technology has greatly improved since then.

ANdrina: I think its time for an ileostomy. We have talked before about you do not want to be dependent on supplies, but I think being dependent on supplies is way better than this situation. If you are against a ileostomy, maybe you should try a k -Pouch instead; since you never had a problem with a ileostomy, I would go with that since you know it works.

You gave the J-pouch your best shot, the next step would have probably been Remicade but you are immune to Remicade as you have told me. I think the ileostomy is your best bet, good luck

Here is the picture I hope this works

Andrina,

Your inflammation looks a lot more intense than mine was in 2012.  Have you been tried on any other biologics besides Remicade?  Entyvio, Stelara, Humira?  My GI believes Entyvio is the second choice for pouch patients but there are a number of other options in that family of biological drugs. Entyvio is a totally different mechanism of action than Remicade, and is only a 30 minute infusion.

Entocort may also be an option if not already tried.

Getting the diagnosis exactly right is very important. If it’s definitely ischemic pouchitis then the usual advice that we share about pouchitis doesn’t really apply.

What would be the course of action for ischemic pouchitis?

@Andreita posted:

What would be the course of action for ischemic pouchitis?

1) You could ignore it. Since you’re feeling well you could discuss this approach with your doctor, including the risks, benefits, and most likely outcomes. You can do this for as long (or as briefly) as your preferences and health permit. If you’re lucky this could potentially work for a long time.

2) You could ask your doctor about trying allopurinol. You can say that you’ve read about it being used for ischemic pouchitis. This might go best if you bring one or two scientific articles that mention this treatment - check the ones at the top of the Pouchitis forum here under the heading “Need a good article about pouchitis?” https://www.j-pouch.org/topic/434913817490966489 . Search for “allopurinol” before printing it out, since they may not all mention it. Some doctors are reluctant to read things patients give them, and none of them love to get unexpected homework, but the best ones are ultimately glad to learn.

3) You could opt for surgery. This needs a better surgeon than performed your original procedure, I think. This also needs them to be very, very sure that it’s ischemic pouchitis.

4) If they really aren‘t so sure that it’s ischemic pouchitis you could try the other biologic medications that help with common pouchitis.

My understanding of ischemic pouchitis is that it is assumed when the inflammation is asymmetrical, as shown in the photos. Your ulceration seems pretty serious. Maybe you have more symptoms than you realize. We can get used to a lot of dysfunction, thinking it is normal. It is hard to know what is normal. I did not know until I had an acute case of food poisoning and was treated with antibiotics. It was then I discovered normal function.

Treatment for ischemic pouchitis is the same as other forms, more or less. There has been some use of hyperbaric oxygen therapy with mixed results. If you respond to antibiotics, good. There is conflicting opinion about the safety of long term antibiotics. My GI was not in favor of it and wanted me to go on Remicade rather than stay on antibiotics, even though I was on a rotation. Ischemic pouchitis is not always due to structural issues and surgical error, as the UC disease could be a contributing factor.

The main point is that each case should be treated individually. Pouch redo or ileostomy is a last resort, not a first resort. But, you do need to deal with the inflammation, since chronic inflammation is what leads to cancer. Still, do not panic. If you feel reasonably well, you are!

http://agaperspectives.gastro....chitis/#.X9VnVy077mo

Jan

Thank you all for your responses. I appreciate the links as well. I'll save this post for later if I need the references

@Andreita posted:

Thank you all for your responses. I appreciate the links as well. I'll save this post for later if I need the references

You are welcome; I hope things get better for you. If I were you, I would definitely give an ostomy some thought since you told me "Life was perfect with an ostomy"; I hope whatever you decide to do works for you.

My life wasn't perfect with an ostomy I had leakage and stuff and I only put up with it because it was temporary. I don't want this forever

@Andreita posted:

My life wasn't perfect with an ostomy I had leakage and stuff and I only put up with it because it was temporary. I don't want this forever

Oh, I was just repeating what you told me over our emails. I understand but maybe an end ilesotomy might be better with leakage. The ostomy belts can help a lot with leakage as far as keeping it in place.

Just give things some thought and see how it goes. In my personal opinion, an ostomy is way better than what you are going through now.