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Has anyone developed an ulcer in their cuff? I have chronic pouchitis and unfortunately, looks like I am going that way with cuffitis as well. I was having a huge flare up and after my scope it showed that I have a very large ulcer just inside that is causing the pain. Cipro and a dose of steroids cleared it up but it seems like it is always there and hurts! I am on Entocort now on a tapering dosage plus my daily dosages on Cipro. Anybody know if this will ever go away?

I have toyed with a gluten free diet as well as dairy-free because something has to be causing my flareups as they are less between now. Anybody have any suggestions?

Thanks so much!

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J jeaneMember
I have had the same issue with a small ulcer on my cuff since takedown about two years ago. Fur me, the only thing that keeps it from getting painfully out of control is cipro. I am now experimenting with a steady low dose as every time I try to get off the medicine( which has been numerous times ) within about a month I flare with incredible pain as well as rectal bleeding. I hope others on the board can offer you some better suggestions that may help you. I have found a squirt water bottle and cleansing rectsl area very well helps somewhat.
J
TE MarieTE MarieMember
Were you diagnosed with cuffitis? Since you have an ulcer in your cuff I would think you'd use a suppository for treatment of cuffitis like Canasa or Anucort. Also as jeanne stated cleaning with water, such as a hand held bidet spray bottle or equivalent every time you have a BM helps a lot too. Antibiotics do not get rid of cuffitis which is actually UC in the few centimeters they left at your rectal cuff when performing the surgeries. It's where the j-pouch is attached to the rectal cuff.

Hopefully you can get into see your GI soon.
TE Marie
J jeaneMember
Yes dgtracey. They are the only thing that keeps my cuffitus quiet. No rectsl meds help me. As a matter if fact they just further aggravate things. Cipro is the miracle drug for my cuffitus. Still not sure why other than extra bacteria passing through just aggravates already compromised tissue and creates a constant infection in my connection and last 2 centimeters of ansl canal.
J
TE MarieTE MarieMember
I can't take Cipro but Flagyl or Augmentin do nothing to help my cuffitis. In the past I did take Cipro for my UC as it was believed in some study I read that it would help as it was helping in stomach ulcers. Then I got c.diff in my colon and never took Cipro again. I don't think it helped too much. So it makes sense it's helping jeane. I wouldn't recommend it as a cure. I use canasa and anucort suppositories. If the pain is bad I take pain medication.
TE Marie
TE MarieTE MarieMember
Just wondering as my last cuff biopsies came back saying moderate active chronic colitis. This was even with me using Canasa daily before the pouch scope and biopsies. That's why he added Anucort into the treatment plan. (Other times they are worse and talked about ulcers and friability.)

Now I understand why the Canasa wasn't helpingFrowner

I talked about my unhappiness with how things are after 2.5 yrs since take down and Dr. Loftus said he could set up a surgical consult. I'd like to know about my options but am not ready to hear about surgery.
TE Marie
J jeaneMember
I have had similar biopsy results as you even when on the rectal meds. After almost 2 years on meds, I still showed active inflammation in my cuff and a small ulcer on the anastomsis. My GI says I will most likely always show some level of inflammation in the cuff even if asymptomatic. I found using all those rectal meds more troublesome and often they irritated things worse and canasa burns. Somehow, I can manage to stay off all rectal meds when using cipro. I guess we have to pick our poison. I am going to talk to my GI about a better long term maintenance antibiotic as cipro worries me and the muscle aches are very bothersome.
J

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