I am writing on behalf of my 76 year old mother, who is currently treating her chronic pouchitis with Canasa, and has only ever treated her pouchitis (diagnosed about a year ago, although probably something she's had since her surgery 25 years ago) and never antibiotics. I was surprised when poking around here to discover that it appears the most common way to treat this problem is with antibiotics. Is it possible my mother will get well with Canasa suppositories once a day alone, without antibiotics?

She also has concerns about cost. She gets her Canasa from Canada now, and I'm unsure if that's a economic decision or an unavailability question.

She's had her j-pouch for around 25 years, after suffering from UC for about 10 years. I, too, have UC but have been successfully treating it without flares for six years or so on Azathioprine.

I believe my mother has probably had some level of pouchitis since her surgery 25 years ago. She has anywhere from five to ten unformed BMs daily, and at least one per night. She sometimes has accidents as well. I don't know if this is normal or abnormal.

With her new GI that diagnosed the pouchitis, she finally got off almost all dairy, which she feels has really helped with her symptoms.

Any insight into pouchitis anyonoe can offer would be appreciated, or if you can steer me toward some educational material on the subject, that would also be much appreciated. It's hard when she's 750 miles away and I'm trying to offer assistance long distance, but that's the way it is, I guess.

Thanks again.

MitzMN

I think if she has pouchitis she needs to try antibiotics. The two that are usually prescribed are cipro and flagyl. If she likes her evening c-o-c-ktail, flagyl wouldn't work. It will make her very sick.

Some people with chronic pouchitis actually 'pulse' flagyl and cipro. Using one for a while and then the other. And there are people here who stay on antibiotics long term at the lowest dosage that achieves remission. Once she is in remission then it's been found that VSL#3 (a probiotic)can keep it in remission. VSL#3 cannot get rid of the pouchitis though. If you click on their link at the top of this page you can get more information. They can also help with getting a medical prescription for it.

For many people here, once they get pouchitis under control, probiotics work very well to keep things at bay. VSL#3 is the best.

Going 5-10 per day is actually within normal limits. Does she take lomotil (prescription) or imodium (otc)? If not, she should try taking a daily dose to see if that helps. The other thing that really helps me is metamucil wafers. They really bulk things up and extract fluid. I know it says 'laxative' but it's a bulker, not a laxative. Of course, she should call her GI to see if it's okay for her to start taking these. I have 2 metamucil wafers and 3 imodium everyday with breakfast. Long term imodium use is perfectly okay. (Regardless of what it states on the package.)

I hope you find a solution for your mother. And welcome to the site.

kathy

This message has been edited. Last edited by: kathy smith,

Kathy has pretty much covered the pouchitis issue. I'll just add that there are other probiotics that your mom can try. VSL is the strongest and the best, but it is expensive and might not be covered by your insurance. Some of the others that also work, are culturelle, PB-8, and flora-q. Flora-q can be ordered on the internet, culturelle can be purchased in most pharmacies and PB-8 is sold in health food/vitamin stores.

From what I know, canasa suppositories are only for cuffitis, which is inflammation of the rectal cuff. It is not used for pouchitis, it's more of a topical medication.

Hope your mom feels better soon,

janna

Yes, I would suggest she try Cipro or Flagyl, but since it is pretty widely known that it is the treatment of choice for pouchitis, I would wonder if her true diagnosis is cuffitis, not pouchitis. Is it possible that she misunderstood her doctor or that her doctor just explains it that way? She can also use oral 5-ASA drugs for cuffitis, once she is on maintenance. I have been using Azulfidine for my cuffitis for more than 6 years and only use the suppositories for the minor flares that occur.

Her frequency does sound within the normal range and unless she is having urgency, pain, fever, fatigue, etc., she may already be well controlled and may just need bowel slowers and/or fiber bulkers.

Jan

Thanks so much, Kathy, Janna, and Jan. You suggest that perhaps my mother misunderstood her diagnosis. That wouldn't surprise me in the least. She seems just kind of spacy about that stuff, and I know she never asks any questions, just follows advice -- unless she decides to not follow the advice. Grrrrr. Like taking herself off her high blood pressure medicine because she convinces herself that the -- well, it doesn't matter. I'm pretty sure she probably didn't understand. I've never even heard of cuffitis until I got here.

Since I posted I did briefly talk to her and her doctor feels that she is better with the Canasa, and I think that's via a scope exam so it's based on something he can see. When I asked my mom if she was better, she couldn't tell. She just doesn't remember/pay attention to that stuff. A source of great frustration.

Anyway, she had a contrast MRI last week, and she's having another test tomorrow, but she's not sure what it is. She made it sound like she was having an endoscopy of the esophagus tomorrow and felt like the MRI was more concerned with the area below the stomach. But what that is based upon is anyone's guess.

I'm relieved to hear that having that number of BMs per day, and even having some mild incontinance issues is not abnormal for folks with a j-pouch. I do recall that her doctor indicated that she needed to get this pouchitis/cuffitis, whatever it is, under control or risk losing her pouch. That might have been said, however, to get her attention more than anything.

What happens to folks with j-pouches as they age? Do they have more difficulties than folks who haven't lost their colon or is it pretty much the same for everyone. Maybe blanket statements like that can't even be made.

I realize I'm babbling here. I better stop before I convince all of you that I'm an idiot. Thanks again for your nice welcome and for your information. It's very helpful to me.

MitzMN

I know that with HIPAA regulations it's very difficult to get information from her doctor. I wonder if it would be possible for her to get the information regarding her diagnosis and then she could forward it to you. Would that work?

The reason I say this is because I have a GREAT GI and when I went for my last scoping I was having some bleeding. She said something about pouchitis and I mentioned that bleeding usually indicates cuffitis. She's always keeping on top of things but since I think she only has two j-pouchers, some information slips on by. I sent her the link regarding cuffitis and she treated it as such. So if you can get your hands on her real information, it might be helpful.

kathy

Thanks, Kathy.

I do know when she had her glaucoma attack, her doctor actually talked to me about her treatment, etc. (and laid it at the doorstep of chronic iritis because of her UC), but I believe that was before the latest HIPAA regs went into effect.

Being so far away is difficult. And the older she gets, the difficult-er it gets. She's intent on staying there, working, till she's 80, so I guess I just have to adapt and go with Plan B.

I wonder if there isn't some authorization she could sign to release information to me. She had her test at 7:30 this morning. Hopefully, it will show everything is in good order and functioning as it should!

Thanks again.

MitzMN

Absolutely Mitz! Just talk to her docs and have them give her the papers she would need to sign to authorize you to to get information and speak to her doctors about her care. I had to do this with my husband and myself (when we were in our 40s) because they would not even let me make or reschedule appointments for him. He is tied up at work all day and does not have time for phone tag with the doctor's office. In addition, she should have an advance directive for health care in place in the event that she is unable to provide informed consent.

Anyway, this is especially important for your mom because things are going to just get worse. People don't tend to improve their listening and understanding skills as they age. I am sure her doctors would appreciate being able to discuss her care with you. It is frustrating for the medical professionals too, when they cannot discuss things with family, and they know the patient may not be fully absorbing what they say.

Jan

Thanks, Jan. That's great advice. You're right, it must be very frustrating for the medical professionals to deal with her lack of insight and understanding. These tests she just had today and last week, her GI suggested them about two months ago, and she got it in her head that she wasn't going to have them for some strange reason. She was mad at the doctor because he was busy when she was there and just poked his head in for a second to talk to her. On that basis, she decided to not have the tests. I asked her when and where she got her medical degree, and she wasn't too happy with me.

After discussing the situation with her GP, after me strongly encouraging her as well, she decided to go ahead with the tests.

I'm going to have to ask her to ask her doctors for the forms to allow me to talk to them. And the health directive is a good idea and something that should not be put off. She's not getting any younger, and what if she became incapacitated by a stroke or something and we didn't have that in place. Foolish to risk that.

I really, really appreciate the prompt replies, the great ideas, and the suggestions. I'm going to discuss the metamucil wafers that another person suggested with Mom, too. I know when she had UC, she was on lomotil. I guess that's another thought.

Again, thanks so much!

MitzMN

I would not rely on your mom to ask for the papers, but would call the doctor's office directly and just ask them to either give or mail the papers to your mom. From what you describe, I would not be the least bit surprised if she decided that she did not need to follow through on this because she was feeling better now.

Jan

Everybody's body responds differently. I've been scoped 3 times since takedown and diagnosed with 'pouchitis' confirmed via biopsies, yet I only respond to UC drugs and not anti-biotics. Mesalazine products, and steroids do wonders for me. Often mesalazine by itself once under remission but I keep getting peptic/stomach ulcers from it without the use of steroids.