I am in a very similar situation and have been since takedown two years ago. I am sorry to year of your son's situation. I have been on and off ( more on than off) Canasa and anucort as well as Cortifiamv with very minimal relief from symptoms. I also take cipro pretty regularly and that is the only medicine so far that allows me to function, but definitely still at a sub par level.

I have been recommended for pouch advancement surgery and have been kicking my heels in to avoid it. At this time, aside from possibly trying biologics, I have exhausted my medical options. I hope this is not the case for your son and he will have better luck with the rectal medications. Also, please note I have a stubborn stricture which complicates my
situation which hopefully is not you son's case.

You can try injections in the cuff but my surgeon indicated it was not a good long term solution. Also as a side note my second surgical opinion from a surgeon who never performs jpouch surgery without mucosectomy and hand sewn pouch told me he is seeing many refractory cuffitus cases with stapled jpouches that he is no performing salvage surgery on.

I take biologics for my enteropathic arthritis, but a happy additional effect has been virtual eradication of my chronic cuffitis, and my GI says my pouch as never looked better. I have been on some form of biologic since 2006. First, it was Enbrel, then Humira, and now Simponi.

No side effects, at least not so far.

Jan

jeane, I have sent you PMs, the notification system got reset or something so you need to reset it to send notifications to you, if you want to receive them.

I am considering surgery as well for my chronic cuffitis. Are you saying that pouch advancement to remove the diseased cuff for those of us that had the double stapled procedure won't work? What will your surgery correct?

boys mom..........
I just read another post of yours where you were discussing the possibility of your son having crohns. If that is the case are they talking to you about using biologics? If those are used I believe they would probably knock out the cuffitis as well.

I use canasa suppositories at night and anucort in the morning as needed for cuffitis. I go to every other night with canasa, when I think I'm better, and so forth to hopefully use it only twice a week for maintenance.

I know he's gone through so much this last year. Hopefully he will be ok with using the suppositories. You have to use them weeks before they start to help and you might end up using them more than not. That's the way it is in my case, sorry to say. I hope it works out better for your son. He is so young.

Yes, we just learned from the video capsule report that he now has crohns. He did the video capsule a year ago and had a report of "normal small bowel", so up until now his diagnosis had been ulcerative colitis. His colon was removed in emergency surgery this past October. He had j pouch surgery in January and take down in April. SInce April he has been struggling - first cycling thru antibiotics, too much weight loss and on his 6 week of TPN with PICC line, then increasing nausea/problems eating and cuffitis diagnosis. Now crohns. He is getting an MRI of pelvis to check for leak at cuff and after that our doctor wants to prescribe remicade ( maybe prednisone first)> He has already failed on both these drugs, so we are going to get more opinions. I hope this will knock out cuffitis and all the rest...TE Marie - are you considering biologics as an option. Have you been told they will work?

p.s - my son did not have nausea or problems eating until after his take-down. When he had the illeostomies he was OK with food -- only since the take down did that all change...as if he did not have crohns until the pouch aggravated his system...

I've decided not to do biologics. I'm 57 and have other health problems. I elected the surgeries because nothing was working and I refused to go on prednisone again too.

I have another test to take a Mayo. I'm on an adjusted treatment plan too so am hoping thing are going to improve