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posted March 23, 2014 08:41 AMHide Post

Hi all, im new to this site but glad im here. I had refractory colitis since 2004 and total colectomy and jpouch in 2011. since I have experienced on and off cuffitis (more on) and now have a rectovaginal fistula. In January I had an explorative surgery to find the fistula try to repair and fix a fissure. The fistula has continued and is now more active then before the attempt to repair, and I believe I have now either formed another or the original has spidered off to a second vaginal opening. my local doctors have not wanted to try another fistula repair being that I have active colitis of the cuff they have started me back on Humira and imuran to try to quiet the cuffitis before attempting any other repairs. I just learned on this site that there are options such as lowering the pouch taking the mucosa of off the cuff, which could be helpful since my current surgeon told me that I have a larger cuff than usual. I didn't even know that lowering the pouch or the mucosectomy were options. I have an appointment to travel to the University of Virginia digestive health center for a second opinion and I'm hoping that these doctors have some better ideas than my local Docs. the Humira and Imuran are not working the cuffitis is getting worse while on these treatments and I believe I developed the n

ew fistula while on them. I'm also having arthralgia and now even iritis seems like my whole body is going through an inflammatory process. this is really unfortunate because my husband and I were wanting to try for a second child and obviously we can do that with all of this going on. has anyone else experienced arthralgia or inflammation of the eyes or other external manifestations while having flare ups? Does anyone have any knowledge or advice on being told they have too much cuff? Has anyone had any experience with a surgery or treatments that were helpful with chronic cuffitis and fistulas? Also in just the last couple of days I have developed pouchitis. The doctor didn't do a scope to confirm but based on my symptoms he gave me a clinical diagnosis and started flagyl and canasa any advice or experience on this would be greatly appreciated. I would appreciate any and all advice. Thanks.

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Jan DollarJan DollarModerator, RN, retired
I have IBD related arthritis and chronic dry eye syndrome, but no iritis so far. I have been on one biologic or another since 2006. Humira was losing some effectiveness and I am now on Simponi, with better results with my arthritis. In addition, I have less pouch inflammation and my chronic cuffitis has gone into complete remission, with only rare flares.

However, I do not have fistulas, so that may mean that you have a different phenotype of IBD than I do. It is a good thing that you are seeking other opinions and perhaps someone else might have more expertise in this area. Have you been offered diverting ileostomy to try to help get you back on track?

Jan Smiler
Jan Dollar
TE MarieTE MarieMember
I feel so bad for you! I don't understand why they went to biologic medications before trying Canasa for our cuffitis! I have chronic cuffitis and keep it under control with daily Canasa suppositories. I do have a normal size of 1-2 cm of rectal tissue cuff so that might be the difference. I am so glad you are going for a second opinion! My local GI sent me to a specialist at the Mayo Clinic when he didn't know what else to do for my chronic cuffitis. He said he was a generalist and I needed to see an IBD specialist. I appreciate a doctor that refers me to someone else when s/he thinks they can help me better. I am considering having a surgical consult with a Mayo C/R surgeon in a few months about pouch advancement surgery for the same reasons you are, except I have the normal size 1-2 cm rectal tissue. It is a constant battle to keep it under control. The main risks is incontinence....

I have the same problem with my eyes and take Restasis plus another eye drop that I can't remember the name of right now.

I'm glad you found our group. Jan Dollar knows more about j-pouches than anyone else I know on the Internet or off of it, except for a doctor or two.
TE Marie
A aimeey17Member
Thanks guys for your replies. What were your experiences with pouchitis? I have had chronic cuffitis and know what that feels like, and what is going on now seems very different. Ive been having increasing pressure in my low low pelvic Andaman the pressure is an aching pain that hurts worse when I walk or sit down. The only thing that makes it feel better in lying down on my side. Im also having increased bowel movements from 10-12 a day to 17-20 + a day although there are very small and liquid because im trying nit to eat because anything formed hurts. Increased gas, fowl order (which is unusual for me), and small specs of blood in stool and on tissue paper. However I feel very feverish cold sweaty palms and feet hot cold flashes shaking yet when I check my temp is usually normal. I had a cat scan 5 days ago along with a small bowel follow through which were both normal. We ould pouchitis show on those test? Jan im not familiar with the procedure you asked me about, what is it? Have you had any corrective surgeries if so what and how was your outcome?
Thank you!
A
Jan DollarJan DollarModerator, RN, retired
I have had no corrective surgeries.

Sometimes when cuffitis or pouchitis is not responding to treatment, they do a temporary ileostomy (a diverting ileostomy, or loop ileostomy is what it is called). This gives your pouch a rest so you can live your life while you sort out how to get this healed. It does not correct the problem, just provides bowel rest and gives you time.

Pouchitis would not show up on a small bowel series unless there was something severe causing the pouch to be misshaped or if there were deep ulcers.

Avoiding eating probably will not help, and may make things worse. You should at least drink nutritious fluids that you tolerate, such as Ensure.

Jan Smiler
Jan Dollar
P Pouch4WfMember
When they told you that your cuff was larger than normal, did they give you an approximate measurement? My wife was left with a cuff that was 4x larger than normal. This puts you, unfortunately, into a completely different category of problems than a normal cuff. The extra rectum tends to behave very poorly with the pouch and is very hard to control with standard "cuffitis" treatments. For us to learn that this was actually the problem, we had to seek a second and third opinion. A very good GI at a specialized center should be able to give you the advice, many others have no idea what they are looking at.....

Dan
P
n/an/aMember
My cuff is "long", and my pouch is "short", according to my last EUA results. I have dealt with years of cuffitis and pouchitis and developed an RV fistula which originates at the dentate line. This has had a draining seton in for nearly 2 years.

I have had sacroiliitis and iritis off-and-on for about 15+ years, but these have calmed down markedly in the last 8+ years or so. I also had fevers and felt very ill prior to the fistula breaking through - not sure if these were due to the cuffitis/pouchitis or the fistula, or something else. I have been on maintenance Canasa, with antibiotics as necessary, which seem to be helping quite a bit. Have you been on Canasa at any point?

My Cleveland Clinic surgeon has recommended a pouch redo to deal with the long cuff, short pouch, and possibly the fistulas (unfortunately, she did not guarantee the fistulas would "go away" with a redo or removal). The alternatives she gave were: live the current situation/seton or remove the pouch.
n/a

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