I have confirmed cuffitis from a pouch scope following jpouch surgery in August (5 mths ago) it started up after a couple f months and has persisted despite 8 wks so far of local treatment. The scope showed extensive inflammation and ulcers around the cuff area but pouch was clear. Historically I had Indeterminate Colitis (UC with aspects of Crohns but not developed) and the disease had been predominantly colon and proctal area. I had an ileostomy stoma for 18 mths and continued to use prednisolone supposortries throughout as I still had inflammation in the remaining rectum but surgeon said he got it all when he performed the jpouch surgery and connection in one operation. A few eels ago I thought the cuffitis was subsiding but now it’s back with a vengeance and nothing is helping. I am seeing my consultant I. A few days but wanted to hear from any other sufferers ... what helped? Is there hope or is this the failure of my pouch.... (I’m in Uk and currently using prednisolone supposortries 1 twice a day and and salofalk once daily, loperamide 3, 3x day and amatriptalyne at night to help with spasms)
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If you can’t find a successful treatment with medication, there is a surgical option: pouch advancement with mucosectomy. You shouldn’t have to lose your pouch over this.
Thanks , my consultant said that the cuff gives me control... worried to not have it as I can’t live with incontinence either... has anyone had this done here?
My cuffitis resolved with Stelara every 6 weeks. My J Pouch doctor also gave me Tacrolimus suppositories. I used that before bedtime and it seemed to help as well.
I have had cuffitis from day 1. Even when I had the ileostomy, my rectal tissue was inflamed and required treatment. I used Canasa (mesalamine) suppositories every day (at bedtime) for about 4 years. The doctor would try to taper me off of them but within a week or two my rectum would flare up again.
The Canasa worked well, but new doctor has switched me to Lialda twice a day (it's the same mesalamine drug, but it's taken orally). Lialda does a fairly good job of keeping everything free of inflammation. If I do have a flare, the doctor will add in a week of steroid enemas and that does the trick.
Stay positive! It's often trial-and-error until you and your doctor find what works.
At the end of my tether today... Been in the loo every hour since yesterday afternoon and all night.. Seeing my consultant tomorrow if I can hold out that long... Thinking it's maybe escalated to pouchitis as well as cuffitis. Output pure water, no matter what I take! Think I'm prob get antibiotics tomorrow but need bed today! Only went back to work full time yesterday as been part time since surgery! Gutted literally!
I’d suggest a C. Diff test *before* starting antibiotics. I hope you feel better soon, Andrea.