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Hi all-

I've been suffering from chronic cuffitis for quit some time now. I've tried Canasa, Cortifoam, Prednisone, biolgics, and all have failed.

Can anyone help me understand what surgical options may be available? I have an appointment at Cleveland Clinic in a few months, but would like to go in with as much knowledge as possible.

I understand that they can advance the pouch. Does anyone know what that entails as far as recovery goes? I am not sure I can endure multiple surgeries with a long recovery. Any information would be helpful, as I have been unable to find much information on this.

Interestingly, I believe that my original surgery (done at CC) included a musectomy and was hand sewn.

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N NomoremedsMember
I was on Cipro for a long time and while it generally made my pouch function better, it did nothing for the cuffitis.

My symptoms consist of a painful tingling just below my tailbone area that drives me mad, occasional fevers, and constantly feeling like I need to empty the pouch for relief. I was diagnosed with severe cuffitis and a small sinus tract which, according to Dr. Shen, is now fixed. In any case, something isn't right and isn't getting better.
N
J jeaneMember
The urgency is most likely from the cuffitus as when mine is in full force I get those same sensations and I am in the bathroom 12 or more times a day. I always bleed also with cuffitus

If you are still experiencing the tingling ( I describe my feeling as gurgling right in my lower rectsl area), then maybe the procedure did not work as Shen indicated? I have not been diagnosed with a leak but only had one scan for this at CC. and often complain of the tailbone pain also. My Gi says it could just be from the pouch but it dies not seem right to me.

Are they able to advance a hand sewn pouch ?
J
N NomoremedsMember
After failing to get any relief from months of Canasa and Cortifoam, Dr. Shen said my options were to try Remicade (failed) and then Simponi (not working). I actually asked him to refer me to surgery because I am so miserable.

Originally I was just thinking ileo, but I'd like to at least see what my options are and if they can try and salvage the J-pouch. In fact, there is nothing wrong with the pouch. I've never had pouchitis, and everything worked great for awhile before the cuffitis started.

It is unclear whether the tailbone pain and fevers are from the cuffitis or something else. Interestingly, a sinus can be the cause of refractory cuffitis. However, Dr. Shen said that the sinus tract I had healed after two needle knife procedures and shouldn't be giving me so much trouble.

I am currently trying to get in with a surgeon either locally (in Chicago) or at Cleveland Clinic to discuss what my surgical options might be. I would be happy to update anyone who is going through the same thing on what I find out.
N
J jeaneMember
This is my exact situation. Please keep us posted. My options were to have pouch advancement surgery as I also have a stricture at my anastomosis. They do a mucosectomy and drop the pouch and hand sew it. Why hasn't Dr. Shen offered this to you as Dr. Remzi would do the surgery, unless you prefer your local surgeon.

I have a small ulcer where the pouch connects and it has never gone into remission since about 4-6 months after my surgery and my anal transitional zone (remaining cuff) has chronic inflammation and repeat ulceration. I am now going on 2 years and 4 months since takedown and most days are painful. I have been taking canasa on and off and anucort for over a year with small gaps of relief. I am certain I will be making some move in the next couple of months also as this has been a pretty miserable life but I am petrified of additional surgery and possibly losing my pouch entirely and that is why I have not made a move yet..very cowardly on my part. Also, the good days in between keep me hanging on with hope.
J
TE MarieTE MarieMember
Nomoremeds,
Have you looked at the K-pouch forum on here yet? I don't know if they can do anything more for your cuffitis since you've already had the hand sewn procedure but good j-pouches can be converted to k-pouches or BCIR's. I'm not sure if that's spelled correctly. They only perform those procedures at a few places in the U.S.A. They become pouches they you drain manually through a valve opening in your abdomen vs having BM's. Therefore you don't use the rectal stump or sphincter muscles anymore.
TE Marie
J jeaneMember
Nomoremeds,

Have you made any decision on your surgery for your cuffitis?

My chronic cuffitis is in full blown mode now and no meds are helping. I need to move forward with further treatment and was thinking of asking my GI to try 6mp first as I was never on it for UC. I am not optimistic though that this will help as due to my long acting stricture, my GI feels most of my issues are mechanical in nature.

What is so concerning about my issues are that they were never there during my UC days (never had anal issues and never even took rectal meds). This leads me to believe that my issues are surgery related and no meds are really going to correct my issues. I think my only hope of retaining my pouch at this time is moving forward or advancement surgery.

I am wondering what steps you have taken since your last post.
J
N NomoremedsMember
Jeane-

I have a consult at the Cleveland Clinic next Tuesday (November 5), and they will potentially do the surgery (pouch advancement) on Thursday (November 7). I will let you know how it goes.

I hate to be a downer, but 6mp takes several months to work and is usually taken in conjunction with a biologic. If you want to avoid surgery, then Remicade (or some other biologic) is going to be your best bet (these can also help to heal strictures).

From what I understand, it is not uncommon to develop inflammation in the cuff, even if you never had it with your UC. What IS unusual is not being able to effectively treat it with Canassa suppositories. You see, the reason it is generally considered okay to leave 1-2cm of rectal cuff intact is that it is usually easy to treat if it does become inflamed.

In any case, the important thing is that you are PROACTIVE. Being in constant pain and misery is no way to live!
N
Last edited by Nomoremeds
AllyKatAllyKatMember
I had this surgery 12 years ago. I went in very sick and for me at least it was worse than the first surgery. It took a good three months till I could sit. I still suffer from inflammation,the doctor calls it pouch it's without a cuff, and have been on various meds on and off all these years.The surgery saved my pouch and I've had some great years with it but with a cost unfortunately. In hindsight I should have stayed with an ileo. I wish you good luck with this surgery and just make sure you have an experienced surgeon do it which I'm sure after 12 years more doctors now have done this procedure.
AllyKat
J jeaneMember
I am at the point where the meds are really not helping. I take Canasa nightly without a lot of relief and need cipro otherwise my pouch acts up. I'm just afraid the advancement surgery will not work. I'm assuming you no longer have the bad rectal pain chronic cuffitis gave you allykat? It's odd the canasa works for the pouchitis but did not for the cuffitis. Have you been taking Canasa constantly for 12 years?
J
TE MarieTE MarieMember
Jeanne,
Are you any closer to deciding what you are going to do or are you in a holding pattern like I am? I've learned I just can't eat heavy meals, meaning meats, and need to take the Loperamide my GI prescribed. I have adhesion pain and according to my latest small bowel study barium water slows down and takes a long time to clear my right side in the stoma/incision area. I use canassa for chronic cuffitis, VSL#3DS and s.boulardii and every few months your old favorite Augmentin for my IPS. It seems like it's taken forever to get where I am and to figure out, with the help of all the awesome people on this board and my doctors, how to deal with my j-pouch. As we know, that could all change tomorrow. My first surgery was 3 years ago and I'm coming up on the 3rd anniversary of my take down. I think you are 4-5 months behind me and hope you are feeling better.
TE Marie
N NomoremedsMember
So here's what happened.

I saw Dr. Ashburn at Cleveland Clinic. She first did series of tests, including a pouch enema, an MRI, and a pouchoscopy under anesthesia.

Based on these tests, she recommended a pouch "re-do" as opposed to mere advancement surgery. She said that the inflammation around the cuff was likely being caused or exacerbated by scar tissue surrounding the pouch which had formed after a small leak from my original surgery.

She explained that she could easily remove the cuff and advance the pouch without needing to create a diverting loop ileostomy, but that this would not necessarily solve all my issues long-term. Instead, she said that she would do a three-step "re-do" procedure as outlined below with three months in between each step. The term "re-do" is a bit misleading, as the majority of my pouch will stay intact.

1. She would create a loop ileostomy to help calm down the inflammation in the pelvis. She said that doing this first would increase the chances that the second surgery would be successful. (I just had this done)

2. She would detach the pouch and clean out the scar tissue which she thinks is the actual root of my problems. At this time, she would also remove the cuff, advance the pouch, and hand sew it back together.

3. She would reverse the ileostomy.

Overall, this is a much bigger deal than I had expected. It is essentially doing the entire surgery over again. While this is exhausting, Dr. Ashburn said that it would give me the best chance of long-term pouch success. I am still quite young (under 30), and I would rather bite the bullet and go through all of this again rather than continuing to live with a problematic pouch or, alternatively, an permanent ileostomy.
N
J jeaneMember
I think your surgeon is making a very wise decision. I was very skeptical when my original surgeon indicated he could do this surgery without a diverting ostomy when two other surgeons said they would not even consider it without the diverting ostomy due to infection concerns in the anal area and the anal pain that accompanies the surgery. When I asked my surgeon about the infection etc. he said we would worry about the diverting ostomy after (in other words lets cross that bridge if we come to it). I did not like that approach.

Did you know you had a leak at the time of your takedown? Did you have any post op complications issues after your takedown (ileus etc?) that would have indicated you had a leak? I can't help but think that may have been my issue as I had post op complications (ileus) and problems from day one of my takedown.

My situation is very similar to yours. I just got off the phone with my GI as I am currently bleeding with cuffitis symptoms and have had these issues pretty much since takedown over two years ago. He feels there is ischemia from scar tissue build up etc. and that there is no blood flow getting to the anal area (which has also narrowed since surgery) and hence any ulcers cannot heal. He is not convinced my inflammation and anal issues are a result of residual UC disease as I never had anal issues prior to the surgery with UC for 25 years.

When I went to Cleveland, they did an MRI and a pouchoscopy looking for any leaks. They did not find any. I did not have a pouchogram though as I was worried about this test. They indicated my pouch looked good after the scope, but I did have a stricture at the anastomosis and the surgeon said he felt I would be back for revisional surgery due to how tight the stricture was. My GI has helped me tremendously with the stricture by dilating it several times over the last year.

I think you are on the right track and I would trust the surgeons there. My GI has recommended them time and time again and if I move forward for the surgery, that is where I will go.

Good luck and I hope the surgeries correct your issues and you are able to be pain free. I know it stinks to have more surgeries, but you are young and hopefully this will correct your problems.

Please keep us posted with your progress as I will be interested in seeing how you make out.
J
Jan DollarJan DollarModerator, RN, retired
Seems reasonable, and sounds like it is what you need. Good luck with it!

However, this does not sound like a redo to me at all, since we usually think of a redo as a complete pouch reconstruction. Yours does sound like pouch advancement with some additional "clean up" work done at the same time. It does sound like you would need more removal of tissue outside the pouch than is typical. Pouch advancement is not usually a "simple" procedure either, and ileostomy is recommended.

Jan Smiler
Jan Dollar
AllyKatAllyKatMember
I've been taking the canassa for over 3 years now. I almost lost my pouch then and was given a choice of pouch removal or remicade. The remi put me into a remission on 2 doses, got very sick on it, and have been maintaining with the canassa but last scope showed inflammation again near the now gone cuff. Having issues again. Been off and on all UC drugs since surgery 2000. Hindsight, should have keeped the ileo.
AllyKat
TE MarieTE MarieMember
jeane,
I was just reading over again and am curious as to why you were afraid to have a pouchogram? Isn't this the one they insert the fluid into your pouch to see if it leaks while you lay on the radiology table? I had it done before takedown to see if my pouch leaked and it's a simple test. Is it more complicated after take down? Maybe I have my tests mixed up. Also if it is ischemia, that would be a lack of blood supply to the area right? Isn't there anyway they can test this? I'm surprised at all the differing opinions you receive! I would hope there would be some consensus about your problem(s) somewhere and understand why you are waiting to decide how to proceed. I'm not happy about how my treatment plan is working as just when I think it's all figured out something changes. Plus I still have the daily abdominal pain and nothing has gotten rid of that, except pain medication and it only helps. To those that say, just go to a permanent stoma - I say I'll still have the abdominal pain, that's not in my j-pouch, so why bother if it won't fix everything.
TE Marie
J jeaneMember
TE Marie,
I am petty baffled also. Without daily cipro of 500 mg, my anal canal is on fire and I have burning pain constantly and cuts in the very bottom of the anal canal and then my pouch freaks out also with cramping and urgency and more liquid stool Cipro firms everything up and slows down my frequency considerably. Rectal meds really do nothing for me. Cipro is the only thing that keeps both my pouch and anal canal calm. I will never understand it.

I am not sure they can test for ischemia. My GI has probably noticed it during my exams. My anal canal has also narrowed considerably since the surgery and I wonder if this is why the anal ulcers never completely heal.

I am just not in a rush for more tests or more surgery as I feel once they detach the pouch and try and advance it and manipulate things more done there, I will just be heading for more trouble. I have had a few cat scan and I am sure if I had a leak it would have appeared.
J
TE MarieTE MarieMember
I'm in never ending treatment changes for my chronic cuffitis and IPS. I'm getting better at knowing what to do but it's depressing as there is no indication that anything is ever going to improve. I am forever going to be stuck in this hell. I know things could be much worse. It's hard to accept that this is as good as it's going to get and any day it could turn worse again. I so wish I'd had the hand sewn procedure but who knows how that would have turned out......
TE Marie
AllyKatAllyKatMember
Just had a scope. Inflammation at the bottom of pouch, no cuff, and inflammation at top, no CD. Had this 4 years ago. The GI has no idea why. Back on bad meds. So tired of this? I hope that pouch advancement works for all of you. As I said in hindsight I would have just gone with the bag but I would still recommend doing a pouch advancement before removing your pouch. At least I can say I Tried everything. And no I really don't want to lose this.
AllyKat
Jan DollarJan DollarModerator, RN, retired
One way that I make it OK in my mind to be on meds that I would rather not be on, is to understand that even with an ileostomy I would not be guaranteed a drug free life. Autoimmune disease is a funny thing and sometimes just finds you, regardless of how well you think you are outsmarting it.

So, here I am, on Simponi, Azulfidine, and currently on a prednisone taper, all because of my IBD related arthritis. Yes, I have cuffitis too. But, one good thing about my arthritis treatment is that it pretty much has eliminated my chronic cuffitis.

In my mind, my medications are not "bad," but good because they help me live a more functional life.

Jan Smiler
Jan Dollar
J jeaneMember
Kathy, I am sorry to hear of your recent news. Is your inflammation above the pouch or at the top of it as you indicated? Maybe yours is hopefully just a small setback. Try and think positive in that you have 4 years in remission and it can happen again.

I am very skeptical of pouch advancement surgery at this time (for myself that is) as I also have an ulcer at my connection. A few days ago the cramping and constant spasms and gas were killing me as I know I was dealing with pouchitis again.

My last ditch effort for my chronic cuffitis is to ask my GI for a sulfaslazine prescription. After a solid year of ulcers that refuse to heal and inserting acucort and canasa suppositores continually, my cuff throbs. It literally aches constantly. When I have to pass stool I feel as if my entire bottom is going to fall out of me. I cannot insert one more thing into my anal canal and at this point I refuse to.

I have been bleeding on and off for almost three weeks and I am in agony. Walking is hard some days. I am having a very hard time eating as it just equates to more pain. My stricture is acting up again and I am visiting the bathroom repeated times to fully empty my pouch. I am in sheer agony and misery. The opening of my anastomosis is probably a bit larger than an eraser head so no wonder my ulcers will not heal. I have been on cipro for over a year almost continually and have tried rectiv as well. NOTHING is working.

I know my situation is not going to improve as my GI indicates I pretty much mechanical issues (possibly surgery related ischemia also). I am calling my colorectal surgeon tomorrow to make a visit after the holiday but I think I will follow my GI's advice and make my surgery at CC. I don't care at this point. The ostomy will be a relief even if it ends up permanent. This is no life. I don't remember what is feels like to be pain-free and that is pretty sad and I feel pathetic for letting this go on this long.
J
TE MarieTE MarieMember
I don't remember where I read it, maybe on here, but the UC cells can come back after a muscosomy (spelling?) and pouch advancement. It was likened to endometritis, it is almost impossible to get every cell removed. So in theory even with a pouch advancement some UC cells can be missed, multiply and make a comeback. I would love for someone to give me proof that this is wrong! Can you ask your GI about this possibility Kathy? I guess that wouldn't make much of a difference. Did he take biopsies?

My GI at Mayo has suggested I meet with a surgeon, if & when I feel the need, there to discuss the surgical options/solutions including pouch advancement for my chronic cuffitis and/or stoma etc. I still think I can get it under control, until I have a major flare, like I've been having the last few days. Today surgery is looking pretty good. I have no quality of life. We are going to my son and daughter-in-law's home for Thanksgiving and I want to play with my baby granddaughter for days! I need to get this under control as the Canasa, Anucort, Norco, Dicyclomine and Loperamide are not doing their jobs yet.
TE Marie
*Zoe***Zoe**Member

Hello Nomoremeds,

I understand that this is an old post but I am hoping you will receive this  

i hope you don't mind that I am contacting you but I saw in a previous post that you had pouch advancement surgery for cuffitis.

I only had my takedown 8 weeks ago and have had so many problems including a pouch leak, abbcess and cuffitis.

My surgeon wants to redo the pouch in three stages as you did.

i am so nervous and just hoped you could give me any info on this and if it was worth all the pain for you?

kind regards

Zoe

*Zoe**
C Clark_00Member

Oi! I can relate After about 4 months post take down I was experiencing so much pain I went to the hospital. I've unfortunately been in pain meds since June and I hate it. In July I had a mucosal stripping which they ended up only doing a section of and were able to pull some Mucosa from my pouch down on the other section. After a month I wasn't feeling any better but my surgeon thinks I need more time.

im having a hard time lately discerning between butt burn and pain from hemmoroids and the cuffitis, as when I use the cortifoam it doesn't really burn far up anymore just at the very end and outside so logistically I think maybe the surgery is working bc when I used to use the cortifoam of hydrocortisone suppositories it would be hell until it settled in there. I'm mostly having issues with pain and tingling right at the end and recently some serious gas and has pains which is new. My digestion is all wacky lately I'm taking probiotics so I'm hoping it'll settle 

But as for surgery options I think the only two options besides going back to an ileostomy would be a rectal muscosal stripping (which is sounds like maybe isn't a possibility bc they took it out?) and a pouch advancement 

 

C
TE MarieTE MarieMember

Hi Zoe,

Since my post above I ultimately had to have my j-pouch removed.  My cuffitis never really went away.  My local GI sent me to the Mayo Clinic when conventional treatment for my cuffitis wasn't working.  If I were you I would ask for a referral to another surgeon.  I don't know where you live but the Mayo Clinic in is MN and Cleveland clinic is in Cleveland, OH.  Each also have hospitals in Florida and Arizona. I'm not saying these are the only places to go but IMO you need to get in to see a top surgeon.  

I respect a doctor that has no problem referring you to someone, outside of their office. I don't know anything about your doctor but you have some serious problems.  I eventually had to have my j-pouch removed. I developed more problems and it just failed. 

My major problem now is pain and this pain is caused by adhesions.  My abdomen is full of them.  During the surgery in March to remove it and the rectal stump included 5 hours of my surgeon lysing adhesions.  That surgery had to be an open one.  A year ago she performed laproscopic surgery to divert from using my j-pouch to an ileostomy.  She spend 3 hours then on my adhesions. 

I'd had 2 surgeries before starting down the colon removal surgical trail.  I want to save you from having too many surgeries.  I should have listened to my surgeon a year ago and had her remove my colon then.  She went along with my wishes but my pouchitis didn't go away.....I could have saved myself grief....

 Good Luck

TE Marie

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