does this mean mucostectomy may be the procedure of choice in the future or are there still too many other drawbacks including mucus cell regrowth?

Honestly, I don't know. Surgical technique is always in flux, with improvements and adaptations as time goes on, based on the collective knowledge base that has gone before. According to this article http://www.nature.com/ajg/jour...ull/ajg2004301a.html there is about a 20% incidence of cuffitis. And if only half of those actually wind up with refractory cases, that makes a 10% risk for really troublesome cases. I am not sure if that is enough to entertain the risk of loss of continence with mucosectomy. But, perhaps in the future, they will be able to perform mucosectomy more completely with less risk of loss of function. If you are incontinent, the pouch is definitely a complete failure.

Of course, all of this is theoretical talk and is pretty meaningless for those of us who have already crossed that bridge.

Jan

thanks jan and very true. that confounded bridge.

I read this article with very mixed emotions as I fall right in the refractory percentage. I keep being told I do not have crohns but every time I back off cipro or even miss acfise my anal issues come back full force with pain and burning ( all clasdic perianal Crohn's symptoms). Now with the constant left side ache like someone has a knife stuck in me majes me too suck to eat. I am really skeptical as what is the real cause of my issues.
Considering the size of my snastomosis is not even wide enough to get the tip of your index finger in, snd it appears on a tilt with fibrous tissue blocking it (yes out of desperation I have checked). I am not sure if I am dealing with surgical related trauma as the cause for my refractory cuffitis or this is now presenting as crohns. All I know is I'm sick and tired of being more sick since having this surgery and I have to make a move soon.

I guess all of this guesswork and weighing of possibilities is the reason that they call it "practicing" medicine. In many ways, making a treatment choice is a leap of faith. Faith in your doctors, faith in yourself, and faith in the hope of good things to come.

I could say everything will be fine, but I don't know that anymore than anyone else. Even if failure is only a 1% risk, it does not matter if you are in that 1%.

Jan

Thanks for keeping us up to date Jan. I read the article and am upset about it all now. Almost 3 years of constant pain, starting with my flare from hell, has worn me down. I keep saying I didn't go through all of this to give up now but at point does anyone throw in the towel? Since I can't see inside my pouch I think I'm treating a UC/cuffitis flare. I suffered for almost a year before finding out I had it and c-diff at the same time. I am inconstant abdominal pain. I have IPS too. It differs sometimes when I think I'm partly obstructed, otherwise I have constant cramping like labor pain. Plus pressure and burning at the back door. It's like the "Ground Hogs Day" movie in that I'm not seeing or feeling anything improving.

Even if I did go to an end ileo I'm thinking I'd still have the cramps as I have IPS and had IBS, something is making my small intestines hurt. Plus I have what they guess as scar/adhesions causing pain. They would still be there plus more from the new surgery.

Here we are in Florida, for 3 months, and I'm still in bed or on the couch most of the time. Before we left I said I could do that in Florida and at least it would be better than at home in the midwest winter.

Sorry this ended up as a rant.

Thanks again Jan

Sorry, didn't mean to upset anyone. I almost didn't post it because it indicated that cuffitis is a bigger problem than we thought if you do not respond to mesalamine or steroids. But, you guys deserve to know the truth, even if it isn't good news. I think the most troubling thing is not knowing if you fall into the surgical complication group or the Crohn's group if you are refractory to those topical treatments.

The thing about statistics is that they change over time, as more data becomes available. Let's hope they come up with some new approachs to this.

Jan

I'm glad you posted it Jan. I'm going to call Dr. Loftus's office and talk to one of his RN's. They have over 20 years of IBD experience and are quick to get me an answer. He doesn't know I'm still feeling so bad as I have not called.

I didn't take any medicine, stayed awake, when another Mayo doctor did my pouch scope. He went 2' up past my pouch and took biopsies from there too. He showed the nurses and me all around my pouch saying it was the best one he'd seen in 5 years. I should have said "I bet you say that to all the j-pouches". He also asked if I'd had the surgery there. I said no but my surgeon was trained at the Cleveland Clinic. He said it looked great until he got to the cuff, which was in full cuffitis mode. I'd been on one suppository or another 4 months at that time. Anucort or Canasa. He said when everything calmed down I should only have around 4 BM's a day as it was a good sized pouch. That was a great relief to me as at my local GI was at a loss of what to do and was very concerned. That's why he sent me back to Dr. Loftus. Dr. Loftus also diagnosed my IPS as well.

I had read an earlier article by Dr. Shen, et al but their sample size was much smaller and they didn't have a control group. I am upset as I have both cuffitis and IPS. I'm glad you found this for us. I saw the cuffitis on the screen and it was inflamed red. The pathology reports from both of my flex scopes said it was ulcerative colitis and some other words describing it. So I think Crohn's can be eliminated from the possibilities.

I've wondered all along how Canassa was going to take care of it because the ingredient it has is the same as Asacol. Asacol was no longer working before the surgeries. I'm leary of it working now. Does refractory mean the medication no longer works because I got use to it during the 14 years I took it?

Thanks again, I'm making an appointment now. I wonder if he'd set up a pouch scope at their Florida Clinic? I need to do something.

"Refractory" just means unresponsive to treatment, not for any particular reason. It's hard to argue with your logic about the low likelihood of a med working differently on the tissue after surgery. It's possible, but would be surprising. It may nevertheless be worth a try, depending on the next-best alternative. In any case, I hope you find something that works well for you.

Even though 5-ASA drugs failed before surgery, it does not mean they won't be effective for cuffitis. Not exactly sure why that is so, but true it is (or at least can be). Perhaps it is because there is so little remaing rectal tissue to deal with. Plus, topical Canasa gets a higher concentration reliably to the inflamed tissue than Asacol does. I didn't switch to oral Azulfidine until after months of Canasa treatment. Remember, all of us were medical failures before surgery, unless surgery was for cancer, dysplasia, or FAP.

But, yeah, if your current protocol isn't helping, you need to call your doctor. Plus, since you have that history of C. diff, you don't want to go on antibiotics to see if it is pouchitis unless hat is sort of a last resort, unless you tolerate Flagyl.

Jan

Thanks Jan. Information is ammunition in the chronic fight we all face here together. I'm hopeful people recognize that. I'm glad you post things like this as you're one of the few that come from a real clinical background.

I becoming increasingly thankful that I A) have a hand sewn pouch, and B) that i had no idea just how risky it was before I had it done.

Jan,
Thank you for posting this article. I can't help but think that more doctors should be reading this website. My surgeon seemed to have no idea about Cuffitis and he and his office made me feel that it was all in my head. I actually had to go to another dr to even be diagnosed with Cuffitis. The situation also annoys me because the only real question that I had for the surgeon was to ask if he could get down low enough to get the most troublesome spots at the bottom. I find now that the answer should have been NO.

I hear you Julie. When I was first diagnosed with UC there was some in my rectum and always was. It wasn't at my rectal cuff but it was not far from it. I didn't know any of my rectum was going to be left in. Shame on me for not studying more before the surgery. I asked him, a few appointments after my take down, if I had the double stapled operation. He looked surprised I knew there was more than one type of surgery and said yes.

It irritates me when doctors "assume" we can't or won't be able to understand what they are talking about and make decisions for us. This is one example. It's water under the bridge and I probably would have agreed to use the double stapled procedure. I should have been told there were options.

Thanks everyone and Jan you are awesome. I think Lions Pride, Julie, me and everyone else would agree we are blessed to have you in our corner.

I'm going to email my Internist to see if she will prescribe a round of Flagyl for me. You have a good memory. I've complained about c-diff a lot. Flagyl's a bit rough on me the first few days but I can take it. It took a month of it to get rid of the last c-diff infection. It would handle that plus pouchitis if that's happening. It's a lot easier than trying to arrange a pouch scope 1,300 miles away from home. I had a bit of inflammation in my pouch last time but I guess that's not uncommon.

This makes so much sense. I had cuffitis since I had my step 1 and step 2 and my doctor just kept saying all she saw was fissures. Then I kept having symptoms of a fistula and once again my doctor said I did not have a fistula. So yes I can see the connection between cuffitis and fistula. Also a problem is you don't have a good doctor who will really listen.

Having a handsewn anastomosis does not guarantee that you have no rectal cuff or that you had a mucosectomy. I am in that category, and was told in advance exactly how my pouch would be created. Mine is essentially the same as the double stapled, with a 1-2 cm cuff, but it is hand sewn. That was just the way my surgeon was taught, and it was fairly common in 1995. So my risk of incontinence was never really an issue.

Jan

This was definitely no surprise to me either. Thanks for the link Jan, would never have come across it otherwise.

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Does anyone have any numbers/ statistics on success from pouch advancement surgery and mucosectomies? Success would be getting rid of Cuffitis/ rectal bleeding and maintaining continence. Continence is my big concern.  I realize this is a delicate surgery requiring a highly qualified surgeon- that being said, what is the success rate? 

Other than topical medications, are there other options before proceeding to pouch advancement and mucosectomy? How long do I try Cortifoam, Canasa, Entyvio, before going to this surgical option? I've been treating this Cuffitis since September with minimal improvement. Entyvio just since January. Guess I am in that refractory category. High doses Prednisone hasn't helped either. Thanks for any information!

laurie

I treated my cuffitis, with Canasa and Anucort for at least 8 months. Anucort didn't get rid of my cuffitis - so wasn't used much. This was after a pouchoscopy and biopsi reports said I still had a moderate to severe cuffitis after 5 months of treating - alternating the 2 different kinds of suppositories. The GI I was referred to at the Mayo clinic told me to keep taking the Canasa as long as I still had it with anucort on worse days. I never used foam.

 

We've had discussions about surgery and I even had an appointment to see a surgeon which cancelled  when my cuff looks better. 

 

Forgive me if you already know about this. I used prescription Loperamaide, which is Imodium. A took it several times a day. 

I hope you are feeling better soon!

TE Marie, 

gives me hope that even after long time- 5-8 months that your cuffitis went away! I will keep up with the Canasa and foam and hope it works. My gastro thinks Anucort not as strong as Hydrocortisone so I never took that. I do take Lomotil - max 8 per day.

I had bad irritation with Canasa initially but I've added it in as an extra dose recently with no ill effects. I do notice that after using the foam and Canasa I am able to have better/ larger BM, frequently with less blood so,I do think it works reducing inflammation. Problem is in between those doses. Thanks for your input! Always appreciated!

Laurie

Anucort is Hydrocortisone Acetate 25MG suppository so I don't understand what your doctor meant when he said it wasn't hydrocortisone.  I've never used foams so maybe that's what he meant - foam would reach more of your jpouch than the suppository Anucort treatment.  I've read where a few people are allergic to Canasa. You said it hurt in the beginning and I'm thinking that was just because your cuff was so bad.  It is mesalamine which is the active ingredient in Asacol and other oral medications you might have taken for your UC.  Did you take any oral forms of it.  What is good here is you get the medication directly on the cuff and don't have to take it orally.  I found a lone Asacol a few months ago and took it to see what happened.  It went completely through to the stool and it didn't open.  They must be right when saying it doesn't open up until it reaches the ph of the colon!  Another difference between our j-pouches and real colons.  

 

After I got my cuffitis under control I found out I couldn't stop taking it but he said t.o take every other day or some of his patients just use it twice a week.  I really hope it works for you.  Now my cuffitis is classified as pouchitis meaning the biopsies are the same.  He still calls it chronic cuffitis and chronic pouchitis.  

Another tip is to pass your stool quicky throughg so it isn't sitting in your j-pouch irritating it.  The consistency of peanut butter works better for me.  After my Neurologist at Mayo's prescribed  Amitriptyline to control my daily migraine headaches. He said it would help with my j-pouch too and it did.  I no longer take and Loperamide (Imodium) and the consistency of peanut butter..  It is an antidepressant and I got to quit taking my other antidepressant.  It works for me but I have major depressive disorder. It's been good for my depression too. Keep this in the back of your mind as an option.  

 

I hope you are feeling better soon

  

Thanks TE Marie again for your input! Yes, I did take Asacol, with success, early in my UC days. Think I took it for a couple of year, then when UC moved up went to Imuran, which also worked very well for me. Then Remicade, also worked for few years! Thankfully! A sorry day when it just suddenly stopped! I prefer to treat directly (foam, suppositories) vs. oral meds, but just feeling like 2x day not enough. Maybe tomorrow he will propose I treat with foam more times per day to get under control. You do give me hope that it is possible to get Cuffitis under control! Trying to be patient ! Maybe I have Anucort mixed up with something else. thanks again! Laurie