Recommended for pouch advancement surgery for chronic cuffitis

i haven't had pouch advancement, but i did read about some of that on this site. try searching 'advancement' - these came up. did you try canasa?

http://j-pouch.org/eve/forums/...837008906#7837008906
http://j-pouch.org/eve/forums/...797082126#6797082126

my surgeon said that if i ever have chronic cuffitis, he can do pouch advancement. also he said nowadays it is considered better to leave a cuff than do a mucosectomy in the original j-pouch surgery. he made it sound like pouch advancement was a relatively simple procedure. they do it transanally, and I believe it is outpatient, or 1-2 days? they said they can move the pouch down lower (they can't do this in the original surgery, but overtime, the pouch are expands and they can actually move it down lower down). if it were me, i would probably go for the pouch advancement (if canasa did not work), but the thing that is concerning is "distal pouchitis", which means pouchitis above the pouch??? that could indicate crohn's or another type of IBD, so advancement surgery may not help. is it possible for you to get a second opinion, maybe at Cleveland Clinic? is there a way to confirm chron's first? sorry you are going thru this, and hope things start looking up soon!

yes, i think there is risk for incontinence anytime they need to stretch the anus and do a surgery transanally. i would make sure my surgeon had done A LOT of these, and get a second opinion first (at CC if possible). from 2001 article, this small sample had about 62% success rate. maybe there is newer data now : http://www.ncbi.nlm.nih.gov/pubmed/11584205

I would DEFINITELY get a second opinion. My surgery was done in 1985 so I am not suppose to even have a cuff. That is what I have understood anyway. I am sure you can relate to its difficult to take in everything when you are the one miserable. ANYWAY when told I had cufitis I said that to the gastro and he said test does not show specific type. Not sure (not one to normally bet) but I would bet that my ulcers in pouch for the last ten yrs have been in the same location which was first just called pouchitis and just in 2010 by different dr. referred to as cuffitis. Even the best surgeons can have something go wrong so I would get a 2nd,get tested for chrons especially if you are really leary about ending up with a permanent illeo. This last dr. said he didn't see any signs of chrons and no pouchitis only the cuffitis. Go by your gut feeling if you are really confindent in the surgeon. Take care! Hope to see good results posted back from you. I know that pain you are feeling and that is the last place I want to put meds. but of course they want it to go right there instead of throughout the body.

jeane,
i believe cuffitis which i am told is mild is another cute word for ulcerative colitis,i agree please get a second opinion,i have been placed on hydrocortisone rectal foam because canada was totally ineffective,in may of 2013 i will be going to cleveland clinic,am also contemplating going back to end ileostomy,i blame myself not enough questions asked.I believe you are on the right path to mercifully ending your suffering,to all on this board good health pauln.

what, how,and when have they tested you for crohns?
and haven't you already tried cortiform already? That was the first line of treatment when I had cuffitis.
and what about entocort to attack everything and get things calmed down. Its a more localized steroid.

But to reiterate my PM to you from the other day...definitely time for 2nd opinion... definitely. You have suffered too long. You need to be sure of whatever it is you are going to do moving forward.

Sorry for typos...cannot correct on iPhone for some reason. I meant second opinion at Cleveland clinic.

http://www.lerner.ccf.org/path...atmentRectalCuff.pdf

Is an excellent paper precisely dealing with our similar problems and is written by Dr. Bo Shen.

When you used the term refractory cuffitis it puzzled me. I'm going to try to summarize what it says in here. Refractory Pouchitis was found to be cuffitis in some of the patients tested. This is a paper about their testing of Canasa on cuffitis.

It also explains the difference in the 2 surgical options. Double stapled we know. The hand sewn one is done when the rectal cuff is scraped. (I think the stapling would probably tear through after scraping all of the cells off of the cuff. The staples are huge in there. I have beautiful color pictures of my pouch with cuffitis.) They also state that patients with cuffitis tend to have IPS.

Did you get a picture and/or the actual Pathology report from the biopsies? As you know after treating my cuffitis, and C-diff, My GI referred me back to Mayo and I'm being treated by the doctor that confirmed I had UC in 1998 and specializes in IBD. During our findings appointment Dr. Loftus said I have chronic cuffitis and to use Canasa until I thought it was over and then to cut back to everyother night and if that worked 2 times a week. He has patients that have found using it, after the cuffitis is under control, several times a week as maintainance works.

He also said I had small inflammation in my pouch which was probably due to the cuffitis and C-Diff and nothing to be concerned about. He also said I have IPS and he was the one that diagnosed me with both UC and IBS in 1998.

During my Mayo scope the GI surgeon went 70 cm into my small intestines and took biopsies as well as at the pouch and cuff. I can't remember for sure but think he took them from several places in my pouch - which by looking at was fine.

I can't find the Mayo pathology report but it said basically the same thing as the Local Pathology report except it talks about friability.

The pathology report on the biopsies from my local scope says the following:

The submitted tissue shows colonic mucosa intense acute and chronic inflammation with ulceration. Occasional crypt abscess are present. There is no evidence of dysplasia or viral induced change. The intensity of inflammation suggests recurrent ulcerative colitis rather than pouchitis.

Diagnosis: Rectal cuff showing intense acute and chronic inflammation with ulceration.


This report was after taking Anucort and Canasa for 3 months. Most of the time Canasa.

I think it is wonderful that you are going to the Cleveland Clinic. As we left Mayo my husband said, so what did we gain from this, peace of mind? I agreed. I wasn't cured but had a treatment plan. So far I'm not able to use the canasa twice a week yet but go from every night to skipping one here and there.

My local GI said he'd treated me with everything he knew how to do and I'm glad he's always been honest about everything. When he finally did a second scope and diagnosed my UC he apologized as he didn't catch it with the first scope. It probably wasn't active then.
My take down was 22 months ago. The report referenced above also talks about Quality of Life. I think you agree with me that our QOL is totally different than we expected. I'm taking antispasmodics and Norco every day for pain. I have pain from adhesions and scar tissue, especially under my stoma and around my belly button and a few other places.

If I remember correctly, you had the surgeries because you had dysplasia and you were feeling fine. I'd had a flare from hell for 6 months and had diverticulitis and UC pan colon and like you didn't want to take biologics and refused prednisone.

I don't understand where your 8mm ulcer is. I believe millimeters and one tenth of centimeters - but don't take my word for it. So that would be less than a centimeter in size. I have not gone through all of this crap to fold it in and go to a perm. ileo. I think we both had nightmares with our loop ileos too. One of the reasons I'm going to keep using this treatment is is I think I'd still have the adhesion and scar pain if I went to an end ileo. I also have other health issues and understand hour you feel with your joint pain.

I probably would do the surgery is it is ever recommended by Dr. Loftus at Mayo - but he's confident the Canasa is going to be the answer.

Good Luck

jeane.. it may take you awhile to get an appt at CC with "the man"... Dr. Shen. You could book it now and then always cancel if you change your mind. You do not need any doctors approval to go get a second opinion. Why wait for your GI to do this stuff. Go to the best GI you can, make a few day visit there, get all the testing there and then you will have all the info you need to make decisions about YOUR LIFE. I wish you the best.
and PS. I am not getting commission from CC! I just truly believe that is the place for the real answers.

Thanks Liz. Coming from CT, it may be tough to get to Cleveland. I do have faith in my GI as he has trained under Shen, but I do agree a second surgical opinion from there may be well worth the trip. I am not sure how much time I have to spare here with my condition the way it is.

I want to have some additional testing to ensure I am not dealing with Crohn's disease (well as best as anyone can assure us). My local GI can do this.

I do trust my surgeon as he has done numerous jpouch surgeries and is the go to guy in NY for many people with problematic pouches, but any time you have issues you start to wonder.

Thanks toughenough for the information. I am going to try and get as much rest as possible, continue on the cortifoam, see my GI and set up a couple of additional consults and see if I can manage to possibly get away to Cleveland. The issue is my surgeon is non-par and the expense of all of this is now killing me.

jeane,

I don't know if CC is in your network. Mayo is in mine - only 3+ hours away. We drove up Tuesday night for my initial appointment Wednesday morning and we left Friday around 5 p.m.

I want to add that I got more testing done and results back and analyzed in 3 days there than what would take 3 months here. Liz could probably back me up on that, for CC, and that will save you suffering time.

Boy do I relate to you! I have been suffering with chronic cuffitis for about a year now. My daily regimen of topical, suppository and oral meds is rediculous. I feel like I did when I had UC. I am seeing Dr. Metzger and have had a second opinion by his colleague Dr. Landmann at the Mayo clinic in Jacksonville. I also have an amazing GI Dr. here in Central Florida following me as well.

After trying the following for almost a year without any real sustained relief:
*Cortifoam enemas once a day
*Canasa (recently raised to twice a day)
*Hyoscamine antispasmodic twice a day
*nifedipine ointment twice a day recently changed to Carafate ointment rectally twice a day
*Valium as needed for daily self dilations to help prevent chronic strictures
*Hydrocodone for pain as needed
*Minumum 6 Fibercon daily
*3 colace daily
*VSL#3 daily
*Xifaxin antibiotic approximately every 3 weeks

It seems that my next option is surgery or some sort of hard core med like Humira, Remicade, etc.

My thoughts are that I can't keep living like this again. I'm tired of being miserable most of the time with severe anal pain, muscle aches, etc. The thing is though that my surgeon (who has supposedly done a ton of reconstructions) is saying that I will definitely need to go to a loop ileostomy while I'm healing. Im "knock on wood" having no actual pouch issues and I'm terrified of losing function because beside the discomfort of the cuffitis, my pouch works great! It has since takedown.

It is a very scary decision. I've heard it's an incredibly painful surgery and hearing that your surgeon says you may not need a diversion for healing makes me think I should have a second opinion... My surgeon is supposed to be one of the best though from Mayo Jacksonville.

I feel for you. I appreciate all the input as it has helped me too. This condition really sucks... I hope you find healing soon! PM me if you like.

Alex

ok I was just thinking about something... maybe I'm all wrong, but its just an idea. I believe cuffitis is UC of the rectal cuff. So it would be similar to having just proctitis when you had UC, not left sided or pancolotis. So why isn't cuffitis being treated as it would've been with UC proctitis? I mean... there's pretty well proven treatements for that. Not many people end up having to have surgery for UC proctitis. I never just had proctitis with UC, but if I recall they throw every rectal med at it - canasa, rowasa, and have no problem with keeping people on rectal meds once they get in remission. I think I was on canasa multiple times a day when I had cuffitis. Also - wouldn't they try ASA drugs or even more focused steroids like entocort before they even considered surgery. I would think a GI doctor should be able to get most of this cuffitis stuff under control without having to resort to surgery... if it really is just cuffitis.

Liz,

I have been on rectal meds for over a year, anucort, canasa, cortifoam...

For some reason my immune system is out of whack here and the ulceration in my cuff is far worse than it ever was with my UC. As a matter of fact, my rectum was always in pretty good shape throughout all my 24 years with UC.

I asked my surgeon about 6 mp, pentasa, prednisone and biologics. He did not like the idea as he felt they had their own set of side effects and would compromise his surgical efforts (further suppress my immune system and set me up for possible infections etc after surgery). He agreed to a few more weeks of cortifoam and my GI is pushing for the canasa again as maintenance after that if we can get this under control.

The truth is I did this surgery to get rid of these issues and NEVER even used suppositories prior to this operation and now I deal with using them twice a day, every day...not a lot of fun.

I think my surgeon has seen me suffer for over 16 months with this and wants to improve my quality of life as my pouch is in pretty good shape even with mild pouchitis. Since he is a surgeon, they tend to view surgery as their cure for your condition. He knows that I will probably struggle with this issue continually and be on rectal meds forever and even at that will still have inflammation which further puts me at risk for rectal cancer.

I understand his thought process, but there is still a side of me that thinks if I took 6 mp or biologics before this surgery (had my prior GI suggested it) I probably would have NEVER needed jpouch surgery as my colitis was always moderate. Once the first path came back with unifocal LGD (not agreed on with second opinions), they put the fear of dysplasia and cancer in me for three years while following me prior to surgery only to find out I had NO DYSPLASIA in my final colectomy. Yes.. I am frustrated and feel somewhat failed by the medical community.

OMG jeane, it turned out you didn't have dysplasia Some where along the way I thought that was the reason for your surgery. This is just horrible. Plus to add insult to injury, you had to pay out of pocket for the surgeries because your insurance company didn't have a good C/R surgeon you felt comfortable with. Life just keeps getting harder to deal with. I hope you find out what you need from these other consults.

Check out BCIR, especially if you live in FL area. It offers a different surgery for people ith cuffitis.

Thanks Guy. I am really hoping to keep my jpouch as long as the pouch advancement surgery works which my surgeon believes should. I am not sure I cam undergo a total reconstruction to that level at this time. It has been a rough 16 months.

I was in same boat. before surgery they said i was positive with LGD and when it was biopsied after removal, the report said no findings of LGD. wtf?

I wanted to update this thread.

My original surgeon indicated I probably would NOT need a diverting ostomy for pouch advancement surgery. The SSO surgeon who, is more conservative, indicated he may need to give me one, only if he felt my healing could be compromised (infections etc) while doing the surgery (same as original surgeon's concerns), but to be prepared for it. I was discouraged when he indicated it would be put on the other side of my belly across from the old ostomy site He also indicated he may need to do a midline incision up to my belly button. Needless to say I left his office that day in tears. My orignal surgery was all done lapo on my current c-section scars and my ostomy scar healed so nicely (very flat about 2 inches or so). I know at this stage of the game, vanity should not really matter but it still does unfortunately...

I also have a ring of omentum around my cuff that my surgeon does as an extra precaution for all females to protect the vaginal area from fistulas when stapling the pouch. The SSO surgeon indicated this may make dissection a bit more difficult. My original surgeon never even brought this up and does not want me worrying about the ostomy as part of the surgery.

For anyone else being considered for this surgery, my original surgeon does not like to treat with cortifoam/anucort for a long period of time prior to surgery for obvious reasons (tissue healing,thinning etc). He wants my inflammation down as best as possible before surgery but wants me to avoid treating with these meds for periods on end in the event I MUST have the operation. With that being said, it does not seem to leave me many options (canasa really does not work well for me).I can start pentasa and may over the next few days.

Of an interesting note, my augmentin did not seem to be working recently (after 19 straight months--yes you heard that right). I was dealing with more night leakage, pelvic pain and diarrhea. My GI switch me to CIPRO/Flagyl due to this and I took these pills for two days before having an odd reaction with my throat feeling very tight(and feeling just plain LOUSY).

I have stopped ALL antibiotics (going on day 3), and I feel the best I have felt in over a year. I no longer have night leakage, diarrhea, CONSTANT left sided abdominal pain and my chronic muscle aches have let up etc. My stools are formed and I am not struggling to empty my pouch as I was before.

I do still have lower back pain from the cuffitis and some urgency when I need to empty the pouch. The rectal pain when emptying my pouch has improved. I am giving anucort a try and will be seeing the Cleveland clinic guys for another opinion in another week or so before I decide what next steps to take. I am nervous about more tests down that way as I am tired of being picked and prodded and really do not want MORE contrast for an MRI or ANOTHER pouchoscopy when there.

I will keep this thread going if anyone is interested in my upcoming results at Cleveland (Nov 12/13.

Wow, what you must be thinking with such opposite surgical opinions! Sounds like one is overly optimistic and the other swings the other way. From what I've read, typically, pouch advancement is done transanally, but of course, stuff happens and and abdominal incision could be necessary (just like when you had your lapro). I also can see why the omental wrapping of your cuff could be tied up in adhesions, but you could have plenty of adhesions there even without it.

Upsetting as it must have been, it is probably best to know the potential complications up front than to wake up to them and feel lied to. I guess the optimistic doc thinks he's doing you a favor by sparing you the worry, but I am more of a "prepare for the worst while hoping for the best" type of person. When you wake up with everything going as hoped, you will be very happy, and forget about your traumatic day in the surgeon's office! Now you just have to decide who will do the surgery...

Good luck, and I look forward to hearing how it goes.

Jan

As you know, I've been dealing with chronic cuffitis too. Please do update this thread so I won't miss finding out how you are doing and for the knowledge. I appreciate how descriptive you are.

It would have been nice to know before my surgery the difference between hand sewn and the double stapled procedures. The first time I was diagnosed, in 1997, I had UC in my rectum and it was still there when I had my surgeries. It wasn't at the bottom but was higher up in my rectum. In hind sight I wish I'd had hand sewn and laproscoptic surgery. Hindsight is easy when you know the results.

You didn't say but I'm assuming your insurance doesn't cover CC. I hope it does.

Antibiotics didn't help my cuffitis and I took a month of flagyl to get rid of my C-diff. BTW Cipro never bothered me but Flagyl does for a few days. Would taking Cipro by it's self help? I can't and will probably never take it again because it's a no no with C-diff and I had C-diff several times before my surgeries and after.

Are they saying you don't have pouchitis now?

You are a brave trailblazer and I'm confident you will have answers to everything before you proceed with any surgery. I'd take an ostomy, if I had to, for the pouch advancement. If I just went to a permanent one with no pouch advancement I'd always wonder if I could have made it.

I just said to my husband, I wonder why I have better control now than when I had UC flairs? Did I really need to keep that blankeny blankety 2 cm? Could have, would have, should haves, there is no going back. All we can do is go forward.

Please let us know how you are going to proceed and how you are feeling.

God Bless you and your family

Thank you TE,

I did know there were two choices before surgery as I interviewed the SSO surgeon and a couple of others before making my choice. All the research points towards stapled being the more technically easy surgery to do with better continence rates. I, of course, was swayed by this research and opted for the double stapled method as the hand sewn technique also involved full open abdominal surgery.

I think they will find, as more people are having this surgery, that the chronic cuffitis issues are higher than they originally thought.

My insurance does cover CC, but it is a 9 hour ride. I guess if I opt to go there, I can always fall back on my surgeon in NY as I do not think he would abandon me At any rate, when you add up the travel and lodging cost, it will probably be a wash as my NY surgeon does not take insurance but the NY PRESB hospital, where my surgeries would be, does accept my insurance and they have the most amazing private colo-rectal wing (if you can call any hospital amazing). I am waiting on a quote first to see what makes sense.

I hope you feel better also. I know this ride has been no picnic for some of us.

Mine was hand sewn, but still have the 2cm cuff. So, I guess there is no one perfect way. There have been some who regretted having the cuff removed because of incontinence.

There is a downside to any option. None of us has a crystal ball and know in advance what our complications would be.

Jan

Thank you, all of your for your candor. I have severe cuffitis and pouchitis. I have had cuffitis starting 2 years post take-down. In terms of pouch functioning I am incontinent at night, when I am asleep and sometimes, a little during the day. Therefore, if this pouch is going belly-up, I would opt for the ileostomy. permanent. I understand now that I probably had some narrowing when the first pouch was constructed in 2000 which caused an abscess. I have the poudh re-do at CCF ; no more infections but no longer continent. I did not realize that was a risk.