need advice :)

I never have bleeding as a symptom of pouchitis. Is bleeding your only symptom? If the blood is very red it could be more external/skin irritation related.

Sounds like cuffitis. Call your doc. There is treatment that is usually very effective.

I fiddled around with it for 4 years, thinking it was the normal thing. My GI said that as long as it was minor, don't worry about it. I didn't know it was the cause of my diarrhea and urgency, that I also thought was normal!

Jan

quote:

There is treatment that is usually very effective

.

Can you please tell which treatment is most effective for cuffitis.

The first step of my two step surgery was conducted on 20th Sept. The take down has been scheduled on 20th Dec. But Iam passing blood (along with stool) through anus.

Doctor says "no problem". Some members (e.g. Kathy Smith)on J-Pouch.org also think that it happens with many people and that bleeding will disappear after the 'take-down' surgery.

I had decided to ignore it. But just now I read your post that you fiddled around with a similar situation for 4 years. I do not want to commit the same mistake.

What should I do if this symptom persists even after take down and my doctor refuses to prescribe any medicine on the pretext that the blood is "not too much."

My doctor has left 2.5 cm rectal cuff. One j-poucher (bootstrap) feels that a rectal cuff longer than 1 cm, is a big causal factor for cuffitis. However my doctor says it is not possible to use only 1 cm of rectal cuff, and hence his decision to use 2.5 cm.

Hi,
The pouch needs time to get into gear so try not to freak out if there is some bleeding. I had bleeding after about 6 years post take-down and it was cuffitis. My first real bout with PI was 11 years post take=down. I am determined not to let it take ME down. I'm on tinidazole and after 10 days on it, I am starting to feel better.
Take heart. This is a little bump in the road.
ajj

re: cuffitis, canasa suppositories and if needed steroid suppositories. worked well for cuffitis.

If the bleeding persists after takedown, after a reasonable amount of time, he should be willing to treat it. But, the mere presence of blood is not the primary reason to treat. It depends on how much bleeding there is, and if there are symptoms too, like urgency, pain, frequency, etc.

Jan

I have a question on this issue for Jan. Is a fistula a concern with chronic cuffitis? I am treating mine with canasa and cipro and it has improved, although I do still have inflammation at the level of a 2/3 according to Bo Shen (it was 8/10 at my check up in October with my surgeon). He has indicated I will most likely need canasa for life. I was bothered by his comments about taking rectal suppositories for life also as my surgeon and GI (oddly enough who trained under Shen) strongly discourage long term rectal steroid use for cuffitis due to skin thinning issues. Of course, this issue has added to my dilemma as whether to medically treat the cuffitis with concurrent pouchitis due to stricture and anal stasis or go for pouch advancement surgery (definitely not something I want to do).

I suggest Laura not wait too long on this issue as I had the same problems soon after takedown and I don't think I was getting the appropriate medical attention for it for too long a period of time and that is why my inflammation was so severe in October. If it is still bothering you see if you can get started on some canasa. I am having improvement on it, but I do think the cipro is also helping as when I reduce this medication (which I am trying to currently), some of the cuffitis symptoms return. I do find if I use canasa every 12 hours or so, my symptoms seem to remain manageable. You should not have to suffer through this as some of us have and later learned from our unfortunate experience.

Yes, maybe. I suppose chronic severe cuffitis could lead to a fistula, but I think that most of the time fistulas start from leaks that occur at the time of the initial surgery (poor healing).

Generally, long term use of rectal steroids are OK, and you would be using them less and less frequently as the condition improved.

However, you are using Canasa, not hydrocortisone, unless I am misunderstanding. Canasa is not a steroid. It is mesalamine, the drug as Pentasa, so there is no steroid issue. Still, when I was taking it, I was instructed to reduce the frequency to whatever maintained remission. That could be as little as once or twice a week. But, after a few months I asked to switch to Azulfidine, mostly because I was tired of rectal meds. My GI agreed to try it, since it works at the terminal ileum and colon, same as Asacol.

Hope that makes sense.

Jan

Thanks Jan. I feel better about the steroid issue as Dr. Shen really had no issue with long term use.I just questioned the difference in medical opinions from my surgeon's recommendation versus Dr. Shen's recommendation and I am still somewhat bothered by this difference in opinions.

Does Pentasa make sense for pouchitis or cuffitis? Dr. Shen also told me to discontinue this medication? I am wondering why you switched from rectal canasa (which is pentasa if I am following you) to azulfidine and not oral pentasa for your cuffitis.

I guess I am confused as to where pentasa is most effective. Is it the ileum, which is now the pouch or the upper part of the small intestine?

I too am very tired of rectal meds and would be happy to take an oral med that could help with the cuffitis or even get down to a few times a week versus where I am at now.

Pentasa is generally prescribed for Crohn's, as it is released throughout the small bowel, but it is used for UC too. Asacol and Azulfidine are released in the terminal ileum and colon, so those two are more likely to get to where they are needed for j-pouch or rectal cuff inflammation. Canasa suppositories are best for getting a high concentration of mesalamine just where you need it.

I just grew tired of rectal meds and asked to try the oral. Azulfidine made sense for me, because that was my old UC med. My GI was OK with me dabbling with options. I still occasionally use the Canasa suppositories for flares. The Azulfidine was for maintenance. For me, I needed to be honest with myself and my doctor, as to what regimen I was most likely to be compliant with on a long term basis.

Jan

Thanks so much Jan. Sulfasalazine was the medicine I was on for over 25 years with UC and I never had cuff issues with UC or any issues remotely close to what I am having now. My rectum was always in pretty good shape with most of my UC issues in my sigmoid. Granted, some of this could very well be surgery trauma related. I'm going to ask my Gi to prescribe my old meds. Maybe they can help me further calm my cuffitis.

Azulfidine has the added bonus of treating enteropathic arthritis, so if you have joint pain two, it just might help that.

Oh, and I failed to clarify; ALL of the 5-ASA medications have the same active componet in them, which is mesalamine. The difference with Azulfidine is that it is bound to sulfa and not released until it is acted upon by bacteria, which are not present until the terminal ileum. Asacol is covered in resin that does not dissolve until it reaches the terminal ileum and its proper pH. Colazol is like Azulfidine, relying on bacteria to break the bond, but does not have sulfa. Canasa and Rowasa are pure mesalamine for immediate release, because they are rectal. Mesalamine is thought to work topically, so you do not want it released too soon after oral administration, because it will be absorbed before it gets to the target area.

Jan

Jan - I still learn things at your knee. It's pretty amazing that after all these years you keep teaching us stuff. So thank you again.

kathy

Yesterday my surgeon did proctoscopy and confirmed that bleeding was due to cuffitis. (Kathy Smith's prediction helped me psychologically but it did not turn out to be true in my case). I am feeling bad because I opted for surgery assuming that I'll never see blood in my stools and will not have to take medicines. But now the doctor has put me on Entofoam (Hydrocortisone). So I have the same old problem along with some new ones related to j pouch surgery.

Now my doctor is hesitating to give the date for the final (take-down) surgery. He was a little sad with this development. BUT when he knew that leaving 2.5cm of rectal cuff intact can lead to cuffitis why did he do that in the first place. I assume that he did not have the expertise that may be required to leave "less than 1cm." cuff. ( Bootstrap's surgeon, Dr. Varma, has done well by leaving less than 1 com rectal cuff). How I wish I knew this earlier and selected a different surgeon for this 'difficult' surgery.

Is there any surgical procedure at this stage ( i.e. after the J pouch has been formed but "final" surgery is pending) which could eliminate this problem for ever. for example: removing the rectal cuff or reducing it to 1 cm.

My rectal cells had become steroid resistant during my UC years. so is it possible that that this 'steroid resistance' will continue and my response will be poor, ( more hydrocortisone and less relief and frequent relapses).

If my problem is not resolved easily I'll look for surgical option to get rid of cuffitis.

Now my advice to UC patients planning for surgery is that they should ask their surgeon how much cuff he/she is going to leave. If he/she says it is not possible to leave less than 2.5 cm, look for some other surgeon...