Grandma, there are plenty of folks with this issue. It’s called cuffitis, and you’ll find a wealth of information on this site if you search for that term. One possible treatment that might help would be one of the ASA drugs for UC, delivered rectally. For example, Canasa suppositories can be helpful.

If all medical options fail and the symptoms are intolerable, people sometimes choose  a surgical solution called pouch advancement, which removes the remaining rectal cuff and sews the pouch to the anal canal by hand. This should only be done by a very experienced surgeon.

Scott.  Thanks so much for the help and advice.  I sure appreciate it.  

Cannasa worked better than Anucort for me and I even used both at the same time, one in the morning and another at bedtime. Some people get it under control and end up just using them during flare-ups. Some use them in-between flare-ups several times a week to keep cuffitis at bay.  Hopefully this is a rare flare-up for you as you experienced 6 years without having one.  

TE Marie.  Thank you so much for the information.  My surgeon took many layers off my rectum.  So I was thinking maybe that is the reason I hadn't had any problems, until now.  It all started in late January but was able to use the Anucort to put it in remission until now.  That is some pain I have never felt before.  The urges to push etc just makes me shake.  It's also exhausting.  I had precancerous cells so she told me that is why she scraped layers off.  In hopes that it will help with no cancer in the future.  Can you take Canasa and or Anucort forever?  As the doctor orders it?  Thanks again for the help.  I truly appreciate it.  

Hi Grandmaof1,

My GI at the Mayo Clinic said to use the Canassa until it worked and it was months before it worked.  I had used Anucort and started the Canassa before I was referred to Mayo.  Then when I went off of it the problems came back so he had me using it several times a week as maintenance.  That wasn't too successful so I used it pretty much for 4 years straight.  By then, I had so many other problems with my j-pouch, it failed.  I was using Anucort in the mornings and Canassa at bedtime.  

Canassa's active ingredient is Mesalamine.  Did you ever take it for your UC?  Asacol was the pill form of it I took for my UC.   

Aren't grandchildren grand  ? I'm crazy about mine too.

Hi, I have same problem.  None of the meds worked for me, in fact I have gotten side effects to mesalamine and can't take.  All my scopes are good, no pouchitis and they never told me I had cuffitis.  My dr said the uc is there and since I can't take meds I either live with it or reverse back to bag.  I am living with it and it's not easy but I don't want the latter.  Hopeful for a healing and for u too.   

You can certainly take Canasa forever, if it works and is tolerated. Anucort is a steroid, though the dose can be much lower than oral steroids, since it’s applied right where it’s needed. In that sense it’s a bit like nasal or inhaled steroids, which I am indeed taking “forever.” But it’s also a bit like topical steroids (applied to the skin), which over time can cause skin thinning and atrophy. Some people can do well on Anucort for a long time, but you have to watch for steroid side effects.

TF, it sounds like your doctor either doesn’t know about pouch advancement surgery, or simply isn’t telling you the whole story. There are other options, too, including a K-pouch or BCIR. The bag may be the simplest option, but it sure as heck isn’t the only one.

TF,

I'd be weary of just Living with it.  Have you tried the Anucort?  My uncontrollable  cuffitis was producing scarring that built up manifesting in strictures and a narrowing in my anal canal.  The strictures didn't respond to dilating, even under anesthesia. It closed right back up. It is difficult to explain without showing you my imaging but it looked like a funnel with it tapering into a very narrow opening. I had to give myself enemas in order to empty. 

I did have other j-pouch problems and ended up electing to go to a permanent ileo and am doing much better.  I am not missing that pain!

It's where my uc was originally. Mine was in the first 8-12 inches or less. And made my life miserable.  No ulcers above that were ever found.  Just polyps.  Weird how a small part can be affected and mess us up so bad.

Richard . 

To TF.  I'm on Anucort HC right now.  You sure have me wondering.  I don't mind using the suppositories but it hurts to get it in all the way.  It even takes my breathe away until it's up in.  I know my jpouch is a little twisted.  Thanks so much.  

To Mysticobra - yes it's amazing how such a small area can cause so much pain and exhaustion.  I have never felt any pain like this.  I never thought having a jpouch would be so hard.  But then again we lost a major large organ.  Thanks for your input.  Sure appreciate it. 

Someone estimated the size of the cuff as a quarter on here once.  That seems too small considering all the pain it causes. 

I am sorry to hear of your plight as I know what you’re going through. I fought both pouchitis and cuffitis with many of the meds already mentioned in addition to several others. I did so for 5 years before heading down to Cleveland and having Dr Deitz convert my j pouch to a k pouch (continent ileostomy) and rectum removed (proctocolectomy, aka “Barbie butt”.)

I wold think that the decision of what to do next comes down to the severity of the inflammation and your tolerance for having UC again in addition to the j pouch. I wish I would have ditched mine sooner — I lost 5 years to being in constant pain and turmoil that was worse than the 10 years before the j pouch. God bless, I wish you better health ahead!

JenJen. Do you have any issues with a K-pouch?  Anything like having issues with a jpouch considering you still have to have a pouch for the K?  Any information would be great and so helpful.  I truly appreciate it.  So Blessed you are feeling better.  

Seen my dr yesterday and went over my continuing issues that we are discussing here.  According to my results I don't or ever had pouchitis or cuffitis.  She believes what is causing my rectum issues is ibs.  Also, believes its a mobility issue damage from surgery.  I k my surgeon said if I ever needed surgery again I would have to go to Cleveland.  I forgot to ask her about Kpouch because I don't know what that entails.  I am now going to switch my probiotic to Align and my ibs med from Hyoscyamine to  Pamine and getting a Cat scan to check on abd, stomach and Hernia.  I still have siob and will continue on Enteragam which did show improvement from taking this medically food product.  

And away we ago another plan; I'll get you posted.

I give my doctor won't take an appointment or respond to me messages.  I just don't get it.  I call and try to make appointment they ask what is wrong and send me to a nurse.  It makes no since to me and I'm tired of it.  Sounds like you have a plan TF.  I have been looking for hours now for a new doctor.  If I can't get in or get a message back then they don't have time for me.  Please keep me posted.  This site is so great with help.  Oh and I do take Hyoscyamine I love the relief I gat from that.  Thanks so much.