Intersting, I take it gospel too, however without it I suffer but still need Codeine and/or Cipro from time to time. I haven't had a cold too since my operation & wonder if it's to do with all the Immunosuppresors I took in the UC years, I've posted a seperate topic on this.

Paul

Thank you, Paul.  I appreciate the comments, and hope your condition gets better.

Terry

TCM I'm curious, what kind of probiotic do you take? I was never told to take one. But thinking maybe it'll help with cramping and gas. I used to take Metamucil every morning but have quit. Didn't seem to make a difference. 

Tnx!

Hello, Mrs P.  I am take Nature's Bounty Probiotic 10 which the label says has 20 Billion Live Probiotic Cultures.  I take 2 each morning and 1 at night.... 1 more than the directions.  But my doc said I can't OD on them.    I think this is the one we get at Costco, or perhaps Walgreens.  I think the gold standard is the type you find in coolers, which are more expensive but supposedly even better.  I travel quite a bit for business and need the convenience of caplets.    I don't know enough about cramping and gas issues to know if probiotics help but I hope that Jan Dollar will let us know.  She is really sharp and explains things well.  I recently answered an inquiry and wish that I had waited because her comments were more helpful and fact-based.   (Jan, if you are a male Jan -  and I do know some - I apologize for the gender error.)

Your comment about Metamucil is interesting...the same non-result that I finally discovered, thanks to my doc.

Good luck to you.

Terry

Well, even after decades of j-pouch history out there, the verdict is not in regarding probiotics.

VSL#3 has the most research in regard to use with aj-pouch, and it mostly useful for preventing a first attack and prolonging remission. But, it is not so good for treating anything but mild pouchitis. Plus, of course, results vary person to person.

There is some research on Culturelle, Align, and Flora-Q for UC and/or IBS. But, for treating active inflammation, the data is weak at best. It is all about health maintenance, and of course, individual results vary. 

Buying probiotics that must be refrigerated is not a good indication of potency or effectiveness, and may even be a reason NOT to buy, unless you are certain that they have been properly handled from factory to store. Shelf stability is a good thing. That said, VSL#3 must be kept cool, and it is well rated. But it is the research, not the fact that it is not completely shelf stable.

There are hundreds of brands out there, all claiming to be the best, but it is only the ones with scientific studies behind them and very high quality control standards that even have a hope of showing a benefit beyond placebo.

The reason most doctors are rather ambivalent about probiotics is because there is not a lot of consistency in their effectiveness. You mostly just have to decide what works for you. Plus, when you stay healthy, it is hard to pinpoint what you are doing (or not doing) that is keeping you that way. It could just be dumb luck.

Sorry I took so much space to give a non-answer. 

Jan

Thanks for taking the time to answer TCM and Jan Dollar. On your recommendation I've been taking Heathers Tummy Tamers with good results. I also found,on Heathers web site, Heathers Tummy Fiber and have enjoyed less cramping and urgency. Who knows! You're so right, it could just be dumb luck and next week I'll be miserable again. I work full time and its a constant struggle. I can't be running to the restroom all day. I've given up on trying to eat healthy. Mostly sticking to a low residue diet. I will consider probiotics next time life becomes too frustrating. Don't want to add more than one new thing at a time. And life goes on.........��

I am new to this but I am interested in how others are doing.  I've had my J pouch for 20 years and am concerned that as I age (I am 65 years young) that I will lose more control.  I was glad to see TCM's post: 70 years and going strong.  Super!  I too take psyllium powder but not as frequently as I use too because I really don't see that much improvement and it builds a lot of pressure in my tummy.  I also  take VSL#3 and lots of Loperamide - 6 to10 capsules per day - 2 before meals and 4 before bed.  With all that medicine, I still go about 10 times per day and get up between 2 - 5 times per night.  I have some leakage but nothing a pad doesn't take care of. I have had chronic Pouchitis for a while but  am trying to avoid taking more drugs but may have to give in soon.  My best wishes to all of you and if you have something else that works better, please let me know.  Have a great day!

I have had my pouch since 2005. I take Align daily, which seems to help. I have to use metamucil daily or the results are not good. I was using Loperimide, but never felt any difference with it. I also suffer from pouchitis occasionally and have to get on antibiotics, but my new GI hates to prescribe them and tells me there is something wrong with my pouch, but then cannot find anything wrong with it when doing a scope. I like reading these posts just knowing I'm not alone out there with problems. 

Utepouchman:  What to take is confusing.   So many meds say they are "Number 1Doctor Recommended", yet how can they all be?  Anyway, I agree that it is helpful to know that we are not alone.  I continue to look for ways to improve my situation - and to help others - but absent that, this support group helps me in my overall outlook.  And that is worth a lot to me.   Cheers. 

Does anyone else take 6-10 Loperamide capsules per day?  Do you know if that is way more than normal?  I would like to know what others take to decrease their  number of bathroom visits.  At present, I am nervous about travelling or staying overnight at someone's home.  If anyone can give me some insight on how to decrease how often I have to go, I would appreciate it.  I am retired but would enjoy it more if I wasn't always looking for a rest room.

I used to take 8 per day, for years. Over time, I was able to gradually reduce it. 20 years post op I still take 1-2 per day. But, I now also take tramadol, an opioid, for arthritis pain, and that also slows my gut.

My point? It can vary, but a higher frequency is common in those early months, but things usually improve with time. I think if you are older the adaptation is more prolonged. Don't be afraid to pester your doctor if you are not getting adequate relief. You can't expect the function of a healthy colon, but you should expect to not have severe urgency and frequency so high that you cannot live your life. You probably had surgery to get off that merry-go-round. You also need to be sure there isn't something else going on, like pouchitis, so be sure to let your doctor know what is going on.

Jan

GMR:  I take about the same amount of Loperimide as you although mine are tablets.  Are there capsules available?

I also share your unease about staying overnight in friends' homes.  I travel quite a bit and take my "defense kit" with me (extra supplies, extra lightweight easily washable/dryable underwear, a pad to wrap around my waist to protect bedding in case I have an accident.)

I have been a in a test phase to determine if a sacral nerve stimulator might give me some relief.  Based on the 1st phase, my surgeon and I have agreed to enter phase 2 which is to temporarily connect the stimulator for approximately 1 week.    If that works well, I will have the silver dollar-size stimulator implanted.  And thankfully, Medicare will pay.    There have been about 100 of these done in my metro area over the last 2 years with a reported 98% of patients seeing a 75% reduction in fecal accidents.  Here's a link to information in case you or others are interested:  http://www.medtronic.com/us-en...el-incontinence.html

My terrific surgeon has been encouraging during our discussions.   She said that I really have no other alternatives (unless I opt to do nothing) because medicines help some but not enough.    She has performed this procedure (day surgeries) at Mayo-Rochester and now here.   The surgery is pretty quick (minutes, not hours), does not require general anesthesia, and I can travel within a day or so.    I expect to have this completed sometime in July.

I wish I would have joined a forum a long time ago.  It is nice to discuss some not so pleasant issues with people who really understand.  Thank you so much for your replies.  I was getting discouraged with my frequency and leakage.  I have been avoiding doing some of the things that I love to do (like going for long walks).  I need to get this under control and just needed some encouragement.  Thank you so much for listening and responding.  I believe it is time to go back to the doctor.

  I am interested in the sacral nerve stimulator and hope you will keep us up to date on your progress, TCM. 

GMR, thanks.  I want to add/reiterate some points:

1. I wear protection at night (Depends, covered by underpants (to make me feel like I'm not wearing protection...psychological for sure but I look better in front of my wife in briefs than in Depends   And I have a pad under the bottom sheet and another on top of it ... and I wrap my "butt" area with a lightweight pad and towel, so if I do have an accident it is minimized in terms of soiling the bedding.
2. I wear a thin pad in my underwear during the day and carry 1 or 2 in my pockets in case I have an accident.  (When I forget, I am often guilty of mild profanity.)
3. I keep emergency kits in both cars and my luggage.  (Extra pads, underpants, baby wipes, etc.)
4. The above helps me stay more active and assured.   In my 8 years of doing this, I have not had any embarrassing incidents that others were aware of.  And I have had several accidents that had I not been prepared, I would have been embarrassed.   I am a private person and would hate for that to happen.
5. The frequency and leakage that discourages you is understandable.  I feel the same way but I will not let it defeat me.   I will prevail
6. I will let you know about progress with the Sacral Nerve Stimulator.  I am pretty excited about it but I think I have been ultra-cautious in the steps leading up to it. 
7. If you want to discuss any of this offline, I will give you my contact info.
8. As Machiavelli wrote in The Prince, "This too shall pass."  That could be taken as a joke but we will get through this.  And getting through it together is key to our mutual success.