Canasa (mesalamine) suppositories are the typical treatment, other than hydrocortisone suppositories. Took about 4 years for me to be diagnosed; guess my symptoms weren't too bad and I wasn't very persistent about it. Took about 3-4 weeks before it was in remission, and that was while taking a couple of weeks of Flagyl too for the first week or two. After a couple of months of the suppositories, my GI agreed to let me try sulfasalazine orally for maintenance. Only rarely need Canasa anymore, and that was 13 years ago.

On the other hand, I probably have the most improvement since starting anti-TNF drugs for my arhtritis (two birds with one stone perhaps).

Jan

Julie,
Is pramaxine a topical ointment?

The Pramaxine is to help control the paint. I can't say that the cream is working just yet but I'll keep trying.

The only advantage I can see is that sulfasalazine releases in the terminal ileum and colon, and Pentasa releases throughout the intestines, but it is also prescribed for UC, so I guess it is OK.

But, topical suppositories probably is best for initial induction of remission.

The thing that can make this difficult, is that sometimes the disease is refactory to treatment, or sometimes there is ischemia, making that the real problem, not UC. It is not like automechanics, where troubleshooting is simple.

Jan

Jan,

If I were to put my money on it, I would bank on ischemia being my issue and my stricture probably adds to it. In 25 Years with UC I never had disease anything like this in my anal canal area. As a matter of fact, I never even used suppositories ever in the 25 years I had my illness and my prior gi always remarked my rectum looked pretty good. This is a whole new mystery to me since having this operation and it amazes me that I am unable to get this lousy segment of tissue in remission despite all the rectal meds I have tried to date. It seems so sad I may lose my pouch over this issue when my pouch is fine and I really have no issues with it and all this time the surgeon had me on antibiotics was really to try and help my cuff issues.

Dr Shen is reviewing my test results on Monday and will get back to me. I wish there was some way for them to note if you have ischemia and worse yet, I'm sure there is no fix for it. I wonder if more exercise and movement would help with the blood flow in that area.

I believe that ischemia is diagnosed by eliminating other causes of the inflammation, unless there is something obvious, like a blood clot in a bigger artery, but that would show up on scans, and cause gangrene. No mistaking that.

This link to an article by Dr. Shen indicates pouch revision can be successful in pouch salvage. Scary, yes, but not a bad option.

http://onlinelibrary.wiley.com....1002/ibd.21448/full

Jan

I have never heard of Ischemia. When I googled it it seems like gangrene. Is that correct. Is there no way to treat this?

I must say that it will take forever for my doctors to diagnose something like that. Im not sure why but it took a year for the diagnosis if Cuffitis and I honestly think that it's getting worse. I am usually up most of the night an even in the morning it stay in my bedroom most of the day because run to the bathroom so much. In my case it just feels Kiel I have urgency but not much comes out. Is this what the ischemia feels like as we'll?

I did get some temporary relief from antibiotics, but that wears off.

Also, I've been thinking of asking my doctor to put me on either oral steroids or antibiotics until the ointment kicks in. Im not sure if this is a good idea because it may mask if the steroid is really working or not. I know that I should be patient but I feel as if I need a break from this disease for a while.

This is a tough situation because I've been doing the same thing for almost a year Medications barely work at this point and I'm working with Dr. Shen at Cleveland clinic to find out what my next steps are. I was recommended for pouch advancement surgery in October due the chronic inflammation in my cuff and I've been trying to hold out to see if I can treat medically before opting for more surgery. I do not have the urgency and frequency that you're describing so possibly you could have pouchitis symptoms at the same time that you're dealing with Cuffitis. Keep in contact with your doctor for your continued treatment

"Ischemia" is a general term that means reduced blood supply (and thus reduced oxygen going to the area). Ischemia can vary in severity. "Gangrene" is an infection that develops in tissue when the oxygen (blood supply) is eliminated or drastically reduced. Once gangrene has developed there is usually no alternative to surgically removing the affected tissue. I know this doesn't help much, but it's useful to have the terms make sense. I hope you feel better soon.

I don't think cuffitis caused by ischemia has symptoms any different than cuffitis caused by UC, infection, or other causes. That is the difficulty when diagnosing. There may be clues in the biopsy specimens, or an uneven distribution pattern that would suggest it, but not the symptoms by themselves.

Scott is right, that there are varying degrees of ischemia, and it does not necessarily lead to gangrene. If it did, you'd be in surgery a long time ago.

I have a lot of urgency when my cuffitis is acute, and the only difference between it and when I have pouchitis is the added symptom of bleeding. It is also not uncommon to have both cuffitis and pouchitis.

Jan

they didn't check me at the ER for cufftis? i hope I don't have that also But 2 days now on 20 mg of Prednisone. I have been on and off this stuff so many times I have arthritis and start of cataracts at 49 so damage is done my other organs are perfect Doc, said from all my tests I am not going to sit around in this pain any longer i am doing something about it! ( I know Jan I need to calm down that is true) I have a show I cancelled already today I want to do my show tomorrow standing up I am better I noticed sitting to long isn't good for people like us is it?

And here is something has anyone noticed from puchitis, cufftis or sever constipation excess mucus and sinus voice issues?

Jeane! i am fighting this same battle, get up so much at night, just had a scope the other day and doc is making me take two packets of VSL3 Daily, along with canasa suppository at night, i am also on two flagyl a day, and one cipro per day, I have been dealing with this for....a few months now. ready for it to be done with. Do you have alot of gas issues that you thing is causing you to go so much? I also find i have to lean far foward to release as much as i can and even then its not all of it, surgeon says the cuffitis is preventing me from emptying all the way, keeping in older stool with bad bacteria that cause the gas, which makes me go alot..vicious circle! i want to try sulfasalazine...that worked a little bit better than almost all meds back when i had UC flares bad.

I've been on sulfasalazine for about 14 years now, beginning about 4 years post op. The Canasa suppositories helped get my cuffitis into remission, but I grew weary of rectal treatment, so I asked my GI if we could try oral mesalamine. It worked for me, and then only needed the suppositories for the occasional flare. I had to up my sulfasalazine dose when I was diagnosed with enteropathic arthritis. But what really put my cuffitis into remission was starting biologics for my arthritis. My cuff rarely flares now, and my pouch has never looked better, according to my GI. I use Simponi now.

Jan

Jan,
I often wonder if the sulfasalazine I was on for years really did help keep my colitis on the quiet side. Ever since stopping it after surgery I have had chronic issues with my cuff. I am going to ask my GI doctor if I can restart the med to see if it may help as the rectal Canasa just further irritates me. I now have fissures from straining to empty the pouch. He has indicated since the inflammation is so localized the rectal meds should work best but after a full year of trying I am really no better. The only othet explanation for my issues is ischemia according to him.

I am with you Jeane. Yes, it makes perfect sense that the Canasa would be a better delivery method for localized inflammation. You get a concentrated dose right where you need it. However, taking the oral mesalamine twice a day gives more frequent contact. Plus, if there is any inflammation in the pouch or upstream, it may help with that too. It was not perfect, as I still needed the occasional short run of the suppositories. But, at least then, it was in addition to the oral for the more acute flares. Since I tolerate Azulfidine well, I saw no reason not to try it. In addition, it is super cheap! Also, the constant use of suppositories was irritating to the anal canal. I don't think that doctors quite get the notion about treatment fatigue.

In my mind, even if the studies showed the suppositories to be superior, there was no harm in trying it. Nothing to lose, everything to gain. My GI was surprised it was helpful.

Jan

Julie G.,
I too suffered too long and found out at my first annual scope I had cuffitis. First of all let me tell you that you are not going to get over this quickly, especially since you've had it for a long time. Sorry, I wish I would have known that when I found out. They put me on hydrocortisone, Anucort, suppositories at first and no help. Then to Canasa, mesalamine, suppositories. These are very expensive which is why they start on the Anucort first. After 5 months of trying both of these suppositories my GI sent me to a IBD specialist at the Mayo Clinic. He put me on Canasa and Anucort. I did Canasa at night and Anucort in the morning until I just used Canasa. He said that it would eventually work and that I had chronic cuffitis. He said when I was better to go on Canasa every other night and if that worked to hopefully twice a week for maintenance. Hopefully you will get over this bout and your case will not be chronic like mine is. Eventually mine did get under control but it is chronic. If I skip too many days without using canasa I am back to going to the restroom all the time etc.

The main problem when using suppositories when suffering with cuffitis is the frequency of going to the restroom. He has me on Lopermide, prescription Imodium, and I take up to 8 per day when having too many BM's. I use Metamucil capsules sometimes too. I also choose what and time what I eat to accommodate the medication usage too. It all sounds complicated but I'm use to it. The main thing to remember is gravity. If you lay down after you are pretty sure your pouch is done empting and stay down you can insert the suppository and keep it in for the minimum 3-4 hours that it needs to be used to be effective.

Sorry if this is too graphic or if I've scared you. I was scared thinking I was going to loose my pouch or need further surgery because of that stinking 2 centimeters Jeanne was taking about. I think it's about the area of a quarter. I did my first pouch scope at Mayo's without medication so I could see this cuffitis and what my pouch looked like inside. It wasn't scary at all. Nothing like UC or my last colonoscopy where part of my nasty narley colon was black. I thought to myself, I can deal with this. It really isn't that big, it is just in an area where we have a bizzillion nerve endings and all of our stool passes through which keeps it constantly irritated.

I hope you are one of the many people that the Anucort, hydrocortisone, works like a charm for. It will take a while for it to work. It's not like how antibiotics work on infections fast.

Jeanne has more than the 'normal', if any of this can be called normal, type of cuffitis. Would you say that is the correct way of saying it Jeanne? So please go ahead and treat your cuffitis as 'normal' cuffitis now.

Jeanne,
I had a shot a Kenalog in my rear end to fight my fibromyalgia inflammation a month ago. Are the doctors talking about this kind of injection or of injecting it directly into the cuff. Do they think you are a candidate for pouch advancement?

TE MARIE,

I discussed the kenalog shot with Dr. Shen. My surgeon indicated it was not a good long term solution, but I know my GI would do it if I requested it and we were exhausting all possible options.

I have probably never stayed on anucort long enough for any period of time as I was warned about the skin thinning from my surgeon so I was always worried about being on this for more than a couple of weeks due to this issue. I maybe shot myself in the foot with this one. I do, on occasion, use them intermittently with Canasa when I am really struggling.

The odd thing was I was off all meds for several weeks and doing fine. I was exercising daily (may have overdid it here with the treadmill and yoga). I was also eating a lot of different foods (onions/garlic/sauces), drinking wine on occasion and eating more sugar than usual (actually functioning like a normal coloned person) and got in trouble.

My medication of choice right now is Rectiv (which gives me very painful headaches immediately after applying) and over the counter cortisone for the anal fissures. These are incredibly painful.I also bathe often in really warm water when I am in this kind of pain. I also started cipro again as I was really having a hard time emptying my pouch over the last week. It was very painful and it took several attempts to empty anything with much difficulty and I am sure the straining is the cause of the anal fissures I am now treating.

Regardless of whether I am on meds or not (any kind), I always have some areas of bulging in my anal canal that feel itchy, tender and uncomfortable if you pass anything past them. Also,it seems as though I do have some built up scar tissue in front of the anastomosis opening in the anal canal that gives me issues from time to time with narrowing at the connection. I have to say though that the anal fissures are the most debilitating thing I have dealt with thus far since surgery.

It takes TONS of patience when dealing with chronic cuffitis. At odd times, it seems to just go away on its own for a long period of time and then flares it's ugly head in full force within no time. I can say that straining is not a good thing to do based upon my experience.
Sometimes it just takes mixing meds etc to see what works best, but I am going to start the oral sulfasalazine within the next two weeks when I see my doctor and I can report back my results as it may be an option for others who are also struggling. I also tolerated sulfasalazine well and it sure is cheaper than $150 for Rectiv and Canasa's cost.

On a side note, when I cannot empty my pouch (and I assume I am struggling with pouchitis), the flu like symptoms I get are very bad. I have full body pain in all my joints and muscles that is very debilitating. It wakes me often from my sleep. I used to think it was from the cipro, but I now think it is the pouchitis.

I have been suggested for pouch advancement but I am holding out as long as I possibly can before having another GI surgery. I am very concerned that I would fall into the 15% failure rate and would have no option but to remove the pouch completely.

DGTRacy, I am really sorry you are dealing with this. Yes, I do get gas and it is always in the bottom of the anal/cuff area. It is a very bizarre feeling passing some gas without a colon. I have many of the symptoms you are describing. Usually cipro with canasa helps get me in order and I also mix the anucort at times. My GI has told me the same thing about the bacteria build up from not being able to fully empty the pouch from the cuffitis which then can cause the pouchitis. I have also had about 4 dilations which help with opening the anastomsis outlet.

I had pouch advancement 13 years ago and still suffer from inflammation. My GI calls it cuffitis without the cuff. I guess my body just loves having UC cause nothing has gotten rid of it and no, I don't have CD. At times it has been very trying. I'm now trying a no grain diet as I'm running out if options.

Allykat,
I'm confused on this. Did you have a mucosectomy? How far from where they dropped
hand sewed your pouch do you have inflammation? Is your inflammation really in your pouch being that you no longer have a rectal cuff ?
I'm sorry you are still struggling after all this time.

I've heard even with pouch advancement the cells can come back. It was likened to endometriosis in a way. It's hard gathering all the sand up off of the beach and if you leave a few cells on the beach they can multiply and eventually come back. Is that a good way of describing it AllyCat? I'm sorry you are still dealing with this.


I'm still using Canasa as my main form of treatment but wasn't told to watch out for Anucort thinning the skin Jeanne. I think you have about 6 different things going on there. Cuffitis, fissures, strictures, internal hemmorids and pouchitis - if I can count them all up. They have commonality to them so see how you are trying to treat that. Straining isn't good for anything but empting which is good for getting the stool out. Have you ever given yourself a warm water enema? I've need to do so for procedures and they are simple. Would those help you to heal and avoid straining?

The problem that we all have is we need to let our pouches rest to heal up but don't want or need diverting ileo time to rest them. That is the only way to get the rest. I think it's better to have thinner in consistency BM's that are more often so I don't strain so much. Then I have a problem of going too much and not having time to use the medications. It's a no win proposition some days/nights. I just manage as best as I can. All we can do is all we can do. Good luck to you all.

Maybe I am just not clear on the pouch advancement surgery. When they advance the pouch do they move it to the very end of the anal canal and then sew it? If so, how can there be anything left in the anal transitional zone or cuff(if removed) where inflammation can occur? I can see inflammation still occurring in very bottom of the pouch after they disconnect it and drop it down and then sew it, but I am still confused on where the inflammation occurs after
advancement.

Yes, I do have many issues going on at once. I think the bulk of them stem from the stricture at the connection. This is so tight you can barely fit the tip of your index finger in. This causes the pouchitis from not being able to empty the pouch adequately and straining and hence the narrowed anal canal and fissures. I also think I have surgery related ischemia that causes the rectal ulcers in the anal transitional zone as never had them prior to surgery (or fissures for that matter). Not sure what went wrong with my surgery as I was supposedly the 'perfect' candidate. If I were to do it again, I would push for a three step and would have gotten off all steroids first before creating the pouch and tried to heal my cuff area before creating and using the jpouch. I was on very high steroids (up to 60 mg) for several months prior to my surgery.

TEMarie, so far no hemmorhoids Thank God and never have done the warm enema but do use a squirt water bottle with warm water at times as it seems to aid in cleaning out the anal canal when struggling to empty. Good luck to others who are also in a similarly trying position!