I know what you mean. HC suppositories didn't work for me and I use only Canassa ones now. Do you have an appointment coming up with your GI or Surgeon? It sounds gross, but isn't all of this gross, they can usually tell by doing a digital exam. You might want to try it on yourself. I'm not too good at telling on myself. The cuff is last thing our BM's go through before coming out so they can feel the cuff. If it is swollen and/or not smooth you still have it. I might not be explaining this the best way. I was on HC for at least 6 weeks and Canasa the same amount of time when my GI sent me to a speciality GI at the Mayo Clinic. after all the testing etc. he told me to stay on Canasa until it felt like it was gone and then do every other night and probably a few times a week for maintenance. It is very expensive, something like $18 each. If they need to have you try it please ask if they have any samples. I don't know what your medical insurance is but mine has a very high deductible.

He also told me it might take months and it did and I can feel it coming on again. I do the twice a week use in-between time maintenance use now.

I hope you are over it. One thing to cross off of your list and move forward.

Take care

the canasa is $18 each? yikes! i know i couldnt take asacol when i had my colon because of pancreatitis but the rectal topical may be ok. i do have an appointment tuesday so ill ask.

Wiggles,

Has your doctor or surgeon/GI worked out a treatment plan with you? Typically if you achieve remission they swap you to canasa suppositories for maintenance.

oh boy. i see him this week but theyre avoiding mesalamine because of pancreatitis. does everyone need maintenance or can cuffitis be a one time post op thing?

wow, my GI has told me Canasa is pretty benign and you can take it forever. I have been on and off it for over a year. Unfortunately for me, I have other issues going that are preventing my cuffitis from healing. If you no longer have bleeding or symptoms, I would think you can discontinue your treatment, but I would not do that without seeing your doctor first.

no blood or pain at this point. this pancreatitis has been a real game changer because at first asacol controlled my uc til my pancreas flared and then all hell broke loose when they had to take me off it.

So sorry to hear that. Ill bet yiur GI will reduce your hydro dosage when you see him/her. Good luck.

i still dont get why they dont just do a mucosectomy right off the bat.

How I wish I pushed for that also. Technically the stapled procedure is easier and they claim it has a greater chance of retaining continence, but there is an argument that there really is no difference in continence levels with either procedure. I believe it is the easier surgery to do so that's why it has been the norm.

When I went For a sso with and old school surgeon in Boston, who has done over 900 of these surgeries, he indicated he always does a mucousectomy and the surgeons are now finding out about the higher cuffitis occurrence since performing the stapled approach.

another question is why dont all uc patients get cuffitis? it would seem leaving diseased tissue in a still active autoimmune patient would result in 100% recurrence but i dont believe thats the case. wonder why that is.

That's easy. UC is characterized by unpredictable periods of remission and relapse. You reduce the potential target tissue from 5-6 feet to an inch or less, there is that much less opportunity for relapse. Plus, there are varying sub-types of UC that respond to treatment differently. Fr whatever reason, cuffitis that does not respond to treatment is uncommon enough to make that risk less common than the risk of incontinence due to removal of the rectal cuff.

Nothing I have read indicates that removing the rectal cuff at the initial surgery has become the better option. It is much, much easier to screw up mucosectomy and the resulting incontinence is by far worse than the risk of cuffitis.

It is all about risk vs. benefit.

Jan

thank you for that explanation jan.

what are the stats on acute cuffitis vs chronic?

I think over all only 4% of j-pouchers get cuffitis but can't remember if that is just 4% of UC j-pouchers or not. Please Google about it as there are several good papers out there that discuss problems with j-pouches and tests preformed. Dr. Bo Shen, of the Cleveland Clinic is always one of the authors. They give you a good insight into not only how rare but the medications tested. I believe canassa is best but if you can't take it the Anucort suppositories may be the only alternative. There is some kind of foam but I think it has the same ingredient that conflicts with your pancreatic problems.

My advice is to keep using what you are on. It still took me months to get in remission and I'm having a flare again, grr.

Hang in there, this recovery is s l o w.

Dr Shen indicated you can take the suppositories forever..although my surgeon is opposed to long term cortisone suppositories for skin thinning reasons. i am sure Shen meant on and off, not continually.

Canasa is the better long term treatment but it obviously is not a good solution for you. Aside from the hydrocortisone the only other thing I am aware of rectally is kenolog injections (also a steriod but longer lasting)and belladonna suppositories (for spasms mainly).

If your issue becomes chronic as mine has, they may eventually suggest pouch advancement surgery with mucosectomy which I am currently fighting. The remove the rectal cuff, strip the remaining mucousa, detach the pouch, advance it and hand sew it to the anal canal (not a fun procedure and your success rate gets lowered each time they have to re-operate).

If I were you I would try and find out if inflammation is causing your issue or not as some of my issues have been surgery related due to a stricture at the anastomosis which further aggravates the cuffitis.

I know the percentage of people with chronic cuffitis is low, but for those of us who suffer, it can be very trying. Good Luck.