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Hello all!  J-Pouch surgery 2003, Reversal 2004.  With my 19 years post total colectomy / post Ileostomy I can say that I am grateful to have not had any major complication in all this time. This post has to do with quality of life.  Currently, I have about 12-14 BMs per day.  Without a colon, I am constantly struggling with keeping myself hydrated and preventing frequent thirst, parched mouth, dry nasal passages, dry skin and dry eyes.  My biggest issue however, is the blasting noise that occurs with BMs.  I don't have a sound-proof bathroom and I have to be very careful when visiting friends and going out in public.  I've tried using Metamucil to keep the stool more solid, but It is difficult to take the quantity that is needed and sometimes it doesn't work.  Gas pills do not seem to help.

Any suggestion would be greatly appreciated!

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Bring your smartphone into the bathroom, and play music on Spotify to drown out the noise. Not sure there is much else you can do unless you want to spend some cash soundproofing the bathroom. This reminds me that I once stayed at a Westin Hotel in Fort Lauderdale,  Florida which had I-95 on one side of the hotel and the Fort Lauderdale airport on the other. As I lounged by the hotel swimming pool, I saw a jet take off right over me, probably just 100 feet over the pool, to a huge, ear splitting roar. However, in my room I neither heard I-95 traffic nor the jet takeoffs. Just the sounds of silence. Rooms were amazingly sound proof.

https://m.youtube.com/watch?v=jgNCNtL3bT8

Perfect song for this thread. Great song and can be played on your iPhone in the bathroom.

CTBarrister
Last edited by CTBarrister

Most J-pouchers can do *much* better than 12-14 BMs daily. I can’t tell from your description what else you may have tried, and whether the frequency is mainly caused by gas, stool volume, or pouch capacity. Have you worked on this with a GI doctor? Tried antibiotics and/or probiotics, as SteveG suggested? Tried Metamucil consistently for a week or two (and, if so, what dose)? Tried bowel slowers, like Imodium? Tried a low-flatulence diet (e.g. few legumes, no carbonated beverages, eating slowly to avoid swallowed air, etc.)?

Scott F

Codeine phosphate for frequency is the BEST thing ever, provided you are in good health gut wise anyway. I was on it for near on 20 years, only recently deciding to come off it, as I wanted to see how I would cope without it. WITH it, my lord, I probably had a frequency near a normal human, but of course everyone knows, with a J-pouch you really don't want very well formed stool, as it's very hard to empty. Thinking about it, if I had the patience like lots of "Normal" folks to sit on the toilet for 20-30mins or so, perhaps I could have kept the low frequency AND had decent emptying too. I never had the patience for that however.

I have the same thing in terms of social embarrassment, I've avoided relationships, avoided staying over at womens houses, also made sure when I lived in various places, they all had toilets both close to my bedroom for convenience, and also far enough away from the bedroom for "privacy" in terms of noise if I had anyone over.

I am moving house soon, and the new one has three toilets, one on-suite to my main bedroom, one in a bathroom, and one totally private downstairs away from everything! Paradise for privacy!!

20 years later and I still have difficulty wondering how I am going to engage in a decent long term relationship with this sort of toilet noise anxiety. Ahh well..

R

Jim, I can’t tell from your post if you live in a NYC apartment where a small renovation might be restricted, or if you live in a house of your own, but what about installing an exhaust fan in the ceiling that you could turn on when you’re in the bathroom?  I have a very noisy exhaust fan in the ceiling and it helps to drown out noise, as well as pull away odors and send it outdoors.

I know how tough it is to use a public bathroom, or when you’re a guest in someone’s home. but holding it in causes more distress emotionally and physically. For odors, I carry a small spray bottle (dollar store) that I put Nok Out into and spray it into the air before and after I’ve used someone’s bathroom. Nok Out is odourless so it doesn’t add the scent of mango pineapple passion fruits in your wake. It has some kind of enzyme that eats the odor. I use it on our cat’s litter box. Sometimes pet stores carry Nok Out. Maybe hospital supply stores too. It is EPA approved for hospital use. Google it. No, I don’t work for them, but I should! I went completely off topic. Try to see a doctor about your frequency. That is a lot of BMs for an experienced pouch that is 19 years old. Certain foods fermenting in the pouch can cause gas and loud bubbling. For me, pasta causes rumbling and gas for hours. It’s the carbs breaking down. Plain broiled fish and rice and soft veg cause no problems. Good luck, Jim.

Winterberry

@Jim in NYC the best thing to help control your bms is Psyllium husk. It helps slow your bowel movements and also helps thicken it. I've also noticed it helps slow down my gas.

As far as the trumpet noises go,  I completely understand.  It's so difficult going anywhere.  There are times I miss so much because I don't want to go out in public. But Psyllium husk does help control all of that.  Give it a try.

SadieM1210

G’day Jim,

For hydration, have you tried oral rehydration salts? There is a “bare bones” product available in the US called TriOral that might help. One sachet between mealtimes (so not close to eating) could help.

Also, just in case, have you had your symptoms of dryness checked by your doctor? It is possible that this has another cause, such as Sjogren’s syndrome.

My j-pouch is also noisy.

Sarah in Australia

K

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