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New pouch and new to the group.  Tried to read a fair amount on the site so as not to be repetitive, but there is a lot I'm sure I've missed.  30 years of colitis, then rectal cancer.  So, total colectomy in July, and take down last month.  I'm almost 60. 

So have some questions.  My surgeon is suggesting I not use either metamucil or similar substances, nor imodium for six months, the theory being I do not want to be dependent on those substances.  Rather, if I allow my pouch to retrain without the substances, I will be freer to use those as needed rather than have no choice but to use them all the time.  Have others received similar advice?

When I had the ostomy, since the pouch was created and hooked up to my rectum, there was butt leakage.  Disgusting leakage at first, then towards the end of the two months, mostly just watery.  Now with the take down, I still have leakage, although now its usually liquidy fecal, and this is throughout the day. Equally annoying, I'll feel like I've leaked some, drop trou to wipe, and there is nothing - we'll call it the phantom leaks.  The doc says it will pass in a few months.  It's really more annoying than the bowel movements, which I can mostly control.  I've been working on the butt muscles since the first surgery. It's better, but still I can't seem to hold the leaks all the time.  Common occurrence, or uncommon?

Gas?  It builds up, and since I can't safely pass gas, it gurgles and then goes back into the gut.  With all that activity, I would assume that when I sit on the can it would come blasting out.  But I have days (and it is worse in the evening hours between dinner and bed) where I go to the bathroom and nothing.  I'll have fecal matter come out, but no gas.  And I can still feel it bubbling, and the pressure.  Again, common, or just me?  And it seemed to get worse when I tried Beano. 

The whole process has been daunting.  Between the radiation, chemo and the surgeries, along with other complications, I've been a house prisoner for most of the last 8 months.  It has gotten better since the take down a month ago.  I was going probably 20 times a day, now its more like 7-9 times.  

So tell me positive things and let me cling to the hope that at some point I will have a life again beyond the walls of my house. 








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I am also new to pouch, had mine completed just short of turning 62, so close in age.  I also have leakage, especially at night time.  My surgeon has prescribed Peptobismol at dinner and 2 Immodium at bedtime.  I had my takedown in early August, and started doing this the beginning of October.   If this doesn't help, he will start me on Lomotil again.  Also no eating after around 7:00.  So far, It has helped, but has not gotten rid of it.  I am also doing Kegels as often as I remember to.  He suggested that this leakage could last up to a year.  It has gotten easier to get rid of gas, pretty much with each BM.  I have found laying on my left side helps, although I can also pass it just laying on my back, just careful about it.  Like I said, I too am new to this, so I am sure there are others who have had different experiences with their pouches.  I have been lucky in that I only have about 3-5 trips to the bathroom a day.  It has helped to try to hold it a little longer between trips to the bathroom.  Good luck!

Hello, RickM. My condition matches yours. I had UC for 30+ years, a few flare ups per year, no medication, but a recent colonoscopy revealed a "funny looking spot" which turned out to be stage 1 cancer. Takedown was April. At first it was lots of leakage, all the time, which burned and there were fissures too. I could only spend an hour or less outside the house because the leakage caused such discomfort, anxiety, and burning pain. I can tell you the leakage will lessen. Your pouch and sphincter muscles will get stronger as days go by and your pouch matures. Some days there is no leakage at all. Liners help protect your clothing and prevent some anxiety. My surgeon suggested up to eight Immodium per day, but I only took two per day for a week or so. It just didn't work for me so I stopped. I tried to control things by diet, eating mashed potatoes with lots of flavouring, rice, pasta (no tomato sauce or pesto because it burned on the way out, and the lashings of oil in pesto made things messy). Just tossed with some grated cheese and a drop of olive oil. Baked chicken, eggs, lots of salmon for protein to heal the sore tissues. Lots of toast with almond butter. I found that eating sourdough bread made things thicker and easier to "hold". It could be the yeast in sourdough that is slightly probiotic, but it works for me. Try to eat clean, simple foods that are gentle, as if for a child. Your pouch is learning to be a colon. It's a big job.

I also started drinking Activia's prune flavoured drinkable yogurt. They come in small (tiny!) bottles and easy to drink. It's only been five days on the yogurt but it's like I have a normal colon. Solid and clear stools. I was taking Florastor for a very short time but was able to stop a week ago when I found that Activia is working so well on its own. I go out with a package of dampened paper towels (Bounty is good and thick). I avoid the toilet paper found in public bathrooms because they are harsh and messy. Laying down in any position seems to let the gas flow through stool to the surface of the pouch and exit. My nurse said the anal area learns quickly what is gas and what is stool that needs to come out. 

Try not to be frustrated or upset. My doctor said "don't stress; guts don't like that" and it's true. Notice when you stress your stomach muscles tighten and food just sits in your stomach, undigested. That's hard for your pouch to empty. It will get better with time. I am down to five or six in a 24 hour time frame. The minor leakage I can manage with dampened paper towels when away from home. At home I have a bidet attached to the toilet, or the bidet squirt bottle. I hope you will feel better soon. 

Thanks Winterberry for the positives I sought.

I'm taking VSL3 probiotics, which I did prior to the cancer and surgeries.  But I will try the Activia.  Went online and there seem to be a hundred kinds.  Can you be more specific as to type and size?  Does it say "drinkable" on the container?  Does it have to be prune? e.g., I saw what appears to be a small cup of probiotic yogurt, vanilla, with "billions of probiotics in every cup."

In payment I will offer another to you a suggestion made to me for the wiping department - Preparation H Totables.  They are individually wrapped and can be purchased on Amazon in bulk.  Witch hazel is the main ingredient.  They are soothing and easily carried out of the home - not that I've had the chance.  But they work.  Not as economical as your excellent paper towel suggestion, but an alternate nonetheless.   I agree with you about some of the toilet paper, even that found in the hospital.  Might as well be sandpaper. 


Hi, RickM. I am looking at my unopened carton of Activia and here is exactly what it says:

ACTIVIA  Drinkable Probiotic Yogurt  4 x 93ml

Drinkable With Real Fruit Puree 

With B.L. Regularis Probiotics

Prunes (with a picture of a prune on the front)

It is a very small carton of four little bottles, each about 4 inches tall, 93ml in each bottle (I am in Canada). The company is Danone. It might be a different name than Danone if you are in the U.S.  I drink a bottle before bed. I just think it has a chance to work more efficiently when my system is at rest and not competing with other food or acids. If it stops working I will post back, but so far, so good: yesterday only four times. I think I paid around $4.50 for the carton. The other good thing is it tastes good, like a blueberry smoothie. Sometimes I'll drink one if I feel hungry between meals. I tried the yogurt cups you mention, but I just can't seem to finish one of those cups. It's almost too much for me to eat. Maybe it's too much sugar in one sitting?  On the other hand if it was a chocolate ice cream cup.....

I haven't seen the Prep H totables on shelves here, but I will search on Amazon! 




Thanks for the info.  Unfortunately, the same product is not available in the US. There is a prune flavored dairy drink, from Dannon, twice the size.  I'll check it out to see if it is similar and cut the volume in half.  In the meantime, I did purchase some of their small yogurt servings which is closer in size to what you describe. I'll see how that goes down. 

you are pretty lucky.  AFTER 1 1/2 YEARS take down i still take 2 lomotil before each meals.  Metumucil before each meal.  opium tinkture (paragoric) twice a day, Cholestyramine twice a day and tramadol when needed because is highly constipating.  None of these effect me negativly. I have absolutely no leakage .

This morning I bought a bottle of Super Enzymes by NOW brand to help with my digestion. I wonder how others take this enzyme, whether with food, or after a meal, and if taking with every meal. Also wonder how long it takes to notice a difference. I will post a new thread on this too. Still drinking Activia drinkable yogurt. I had a minor issue these last two days with loose stool but I know it's a direct result of my showing absolutely no will power when presented with a piece of homemade cinnamon crumble coffee cake. 

What moved you to try the super enzymes?  Would welcome hearing from you as to the result of taking, whether you noticed improvement.  Spoke with the folks at Dannon.  I can't get here what you get in Canada.  So, bad on us.  

I think when presented with homemade coffee cake, the indulgence is understandable. 

Finally, while my initial comment was made while everything seemed bleak and dark with little improvement, all of a sudden things got better.  Far fewer trips to the WC, less butt leakage.  Still feel pretty crappy, but less crappy.  So that's a good thing and cause for a smile.  I'm sure improvement is not a straight line and there will be setbacks.  But knowing it can and does get better gives me hope. And with a nod to Emily Dickinson - I enjoy the feathers!


Hi, RickM. I decided to try a digestive enzyme because I sometimes experience a gurgling, noisy stomach. Undigested food can be painful for my pouch to push out, as are loose stools, and gas can make painful spasms. On that thread a member, Since1991, posted a photo of their NOW brand super enzyme that helped them, and their generic probiotic S. Boulardi, which is good when on a course of antibiotic, like Cipro or Flagyl. I know enzymes help break down food, especially carbs - the cause of gas and bloating. And I want something to help with nutrient absorption since diarrhea can deplete the body. I took one super enzyme with lunch today and will take one with each meal everyday. I will post results under this thread when I notice a change and if it helps me. The NOW I bought is 180 capsules for $34.99. I saw a bottle of 90 capsules too.  If you try the Activia yogurt cups, I wonder if the prune choice will work even though it's the thicker yogurt instead of the drinkable style. Maybe it's to do with the prunes? I would choose the prunes' flavour over their lemon or vanilla or strawberry. Let's hope Danone will introduce the drinkable to the U.S. market soon.

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