incontinence

With my J-pouch, which I've had probably 15 years or so, my most distressing problem is incontinence, especially at night. When your body is relaxed and your are asleep boom! Out comes the stool. Sometimes it is very messy and distressing. I wear diapers under my pj's and insert a bunch of paper towels but most times it is not enough. Maybe someone out there has a solution...it would be wonderful to get some relief. I can deal with this stuff during the day but at night you have no defense. 

Original Post

Has this been a problem for all 15 years, or something recent?

The only times over the last 10 years I have had problems like that were when I had a bout of pouchitis. Round of antibiotics would resolve it. I started taking Prilosec once a day - and haven't had an incident at night like that since (although I did have a minor "blow out" at lunch one day - thought I had gas and didn't!).

Lionel, can you tell us what else you've tried? Bowel slowers (Imodium, Lomotil, opiates)? Soluble fiber, like Metamucil? Stopping food at a particular time?

Taking both antibiotics together isn't usually a good idea, at least to start. You got an upset stomach from them, but you can't tell which one caused it. One of them probably would be fine. Have you had a pouchoscopy to see if there is trouble inside your pouch? When you took the antibiotics, did they help?

Hi Scott...thanks for your reply. I have tried all of the meds you mentioned plus Metamucil. Latest is trying not to eat after about 5pm and a very light meal...maybe just tea and a slice of toast. I am asking my doc to try Cipro alone...last time Cipro and Flagyl were a bad combination. Once long ago Cipro alone did help. I tried Prilosec last night as someone suggested and the result was horrible diarrhea. Not sure if I want to try again. My doc also suggested getting Biogest which which some patients have had success. I think I have pouchitis and hope that I can avoid the pouchoscopy. Will try and tough it out until I find something that works. Ever try and play golf when you have urgent cramping, bloating, bleeding butt etc etc. ? No fun at all! Thanks a lot for your message...Lionel

When I have pouchitis, nothing over the counter does anything for me. Only antibiotics worked. When it became chronic my GI put me on Remicade and Imuran. I had already been on oral Azulfidine and mesalamine suppositories. It's been over a year and I have been able to stay off antibiotics.

Jan

I know how you feel when it comes to incontinence. I used to have that problem for a while but it went away because I started taking Colestipol. If you don't have pouchitis, maybe medications like Colestipol could help you. I wouldn't want to get a scope of my j pouch either. Except since I have fap, I have to get it done. Well, I hope everything gets better for you. 

Hey Lionel,

I was right there with you! For me I felt totally humiliated with it, especially when restarting my life after my divorce. Anyway...

So just recently I've made some real progress with this. I used to have 'accidents' nights, sometimes 2x or 3x a night. I had/have chronic pouchitis for 15+ years and what I noticed was the gas was mostly the culprit. I started taking 2 GasX nightly and that seemed to help some. However what helps the most was simply cutting my dinners to about 250 calories only and not eating anything after 7pm. Nothing. If I work late and miss dinner then I miss dinner. Since doing this I haven't had an accident in 3 nights straight. I still wake once to use the restroom but the urgency or problem isn't there. I honestly don't think I've had this experience since before my surgery in 1991.

I know everyone's body reacts and transforms differently after the surgery so I don't know if it'll help. Keep us posted on how it goes.

Best of luck and hang in there. Ultimately you'll find what works for you.

Hi Scott...thanks a lot for your reply. I know gas is the culprit and I also take GasX with mixed results. I have also tried to cut down on food though 250 calories is pretty slim. I have just started antibiotics (cipro) and we'll see how it goes. I was waiting for my doc to OK it but he hasn't gotten back to me yet but I am going to take it anyway. I sure hope it helps as it can be pretty miserable at times...I am pretty sure I have a bout of pouchitis. Thanks again and best wishes, Lionel

Not sure if this helps but anyway: I had the op for a J Pouch after 20 of poorly controlled UC. Since then the major problem I had was itching anywhere and everywhere. I discovered that the problem was damage to my nerve centres and deep massage would help, and the Pregabalin. I have been fine with no incontinence until 8 months ago when I accidentally swallowed a large peach stone. 24 hours later as it exited the stone caused damage and since it felt like it was still there I had a proctoscope under anesthesia. When Iawoke there was a lot of blood and I realised that damage had been done. The surgeon and staff had vanished and all I was told was that here was no stone. SHortly afterwards I started with fecal incontinence for which I used stick on pads which protected my clothes but not my skin which became very sore and inflamed. Cleaning, washing and wiping was no good as the problem happened at night. I then researched the problem and found Cavilon cream and spray. There is a similar product in the USA: Calmoseptin. I saw a specialist Nurse a Continence specialist who was very helpful and showed my how to do Pelvic Floor Muscle strengthening exercises. These plus Loperamide (Lomotil) three times daily have greatly helped and I have even gone back to normal underwear day and night. the only thing is that as soon as I feel the warning I have to go immediately - like now! I don't know if you take sleeping tablets but these obviously would be a problem. I think the Lomotil plus 4 daily exercises have helped.  

Hello Aloysius...many thanks for your reply. I am familiar with some of the meds you mentioned...for sure taking sleeping aids are a big problem, for as soon as the body totally relaxes then the problem begins. I guess it's a trade-off...less sleep and no mess or the other way around. I tried Lomotil and other similar meds like Immodium...also had a bunch of the pelvic exercises to strengthen the muscles in that area. Some days are better than others...depending on how late you eat and what you eat. It's amazing how much stool the body holds. Every time I think I am empty...boom! Another load arrives. I think one has to go with the flow and be grateful that we are not worse off than other afflictions. Lately I've had great success with antibiotics (cipro) and the bacteria infection I had in my pouch has cleared up, so I am really grateful for that. No more of those horrible cramps, urgent urges, and sitting on the potty when nothing happens. Thanks again and best wishes, Lionel

Hi Lionel

Yes the problems you describe are too painfully familiar. One thing I should mention: I have noticed that fruits can be absolutely disastrous, except bananas! Soft pulpy fruits are the main culprits and stimulate the small bowel more determinedly than the colon you sadly lost. It is a powerful and rhythmic force. I have found over the 20 years since the op that foods such as sweet potato and broccoli highly satisfactory. To eliminate fruits from your diet is of course a shame so obviously there has to be a satisfactory intake of vitamin C in either ways. Orange juice not much good but the mixture of summer fruit juices to dilute in smallish amounts OK. Luckily I have never had pouchitis or other problems. Sometimes when i look at all the awful problems of this major procedure and the repeated dashing upstairs to the toilet, I wonder if I should have taken my chances with cancer. On the other hand my leg muscles are in fine shape.

There are so many new drugs coming along, but too late for 'what if..' etc.I have had to use pads after the dread peach stone incident but it is improving with dietary modifications, Lomotil 3x daily and pelvic floor exercises.  How often have I moaned to myself on the misery of all the multitudinous problems I have had, wondering if I have accepted a whole bunch of fearful Karmic retributions. 'Why me?' and there again 'Why not me?' One does tend to philosophize and believe that somehow the acceptance of suffering is congruent with the teaching of the Buddha - the Prince Siddhartha Gautama - of the first noble truth. Meditation etc is the answer to the second and third noble  truths and somehow the graceful acceptance of suffering is high on the highway to realisation. This is for nothing as I tend to ramble on. A born philosopher as are many of my Ashkenazi  compatriots.

best wishes

Alan

 

 

 

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I've just started the Fodmap diet because my leakage, gas, bloating and pain was increasing. I've never had pain- not during my 10 years of UC or since my takedown in March of 2014. Just happened to talk with friend who was recommended this diet and turns out stone fruits - like peaches and cherries are high in certain thing that causes gas. Many other fruits and veggies too are on the avoid list but can eat bananas and oranges. After 4 days of eliminating my beloved peaches, cherries, watermelon and a bunch of other foods I am significantly more comfortable! Check it out- it's a short term elimination diet with some research behind it, and after couple weeks you add individual foods back nail you figure out your sensitivities. I thought I might have pouchitis but really much better. Night time leakage still an issue that comes and goes for me. When it flares, I attribute it to deep sleep, I start setting timer on my phone and get up after 2 hours of sleep, then 3, then I can usually sleep 3 more hours without leakage. Body gets used to it, so while my sleep is interrupted it is for short time and I can get right back to sleep. Not ideal, but improvement over leakage.

good luck!

HI LJZ...thanks for your message....sounds very interesting. Where does one get this "Foodmap Diet". Though I'd hate to give up on some of  my favorite fruits it certainly would be worthwhile, especially with the chance that you can go back to them again later. Best wishes, Lionel

Thank you Liz for your helpful input. Its weird but my bowel function varies wildly, sometimes with great difficulty and a virtually normal thumb width stool, then calamitous torrential downpour with thunderous retorts of explosive gas. I agree fruit is often the culprit but when my 'other half' is enjoying a bowl of cereals with cherries, strawberries, cooked apple etc I am tempted. Its true that the last meal of the day should be a light one no later than 5 pm or else there sometimes up to 4 trips running to the bathroom between 11 pm and 3am. After 20 years you would think I would have a decent regime. I think the Cavilon cream and spray has been a big help as well as sitting on the bath side and giving the rear end a good showering. I just wonder how many people after this procedure never have any trouble at all? And what's  the difference between an ileostomy and a Pouch? Somebody should publish so that a new candidate can make an informed choice before embarking on a life of toilet focused  behavior.. My first name actually is Alan from West Midlands UK. I used to belong to the NACC - National Association for Chrohns and Colitis and the only useful thing I got out of that was the Radar key to open all disabled toilets. I usually carry around a pack of Baby Wipes, cream and a spare pad but sometimes have been forced to clean up with wet toilet paper. Somebody said that they didn't seem much better off than Colitis. Only thing I guess is that cancer is not a probable conclusion, but sometimes I swear I would have taken my chances. I will have a look at the Fodmap diet 

Lionel posted:

HI LJZ...thanks for your message....sounds very interesting. Where does one get this "Foodmap Diet". Though I'd hate to give up on some of  my favorite fruits it certainly would be worthwhile, especially with the chance that you can go back to them again later. Best wishes, Lionel

I Lionel. Saw your post. Its no typo - Fodmap diet, really: 

https://www.google.co.uk/searc...mgrc=pzPneBQ6NVlgKM:

Best

Al

Fodmap is an acronym for a group of poorly absorbed, fermentsbke carbs- they act in cumulative effect to produce gastro symptoms of bloating, gas, pain, diarrhea or constipation. I've been having lots of those, with definite increase recently ( I live in Midwest and peaches and cherries are my splurge this time of year- were, past tense. Google it- lots of info on it and mostly all agree on the high Fodmap foods to eliminate and low Fodmap alternatives. Overall easy to (and important) still get varied diet. I figure I can give most anything up for 2-3 weeks.( I pitted and froze 2 lbs of bing cherries for a later treat.) Then I'll decide which foods I want back and try reintroducing one per week. My guess for me is that dairy is gonna need to stay limited but I'm using almond milk now and I could live with that. Just made blueberry pancakes with oatmeal flour- different but good. Can have real maple syrup but not cheap stuff. So there are enough substitutes to make this a reasonable diet to follow for 3 weeks with some planning. I am amazed, started on Wednesday, today is Sunday and already my BMs are down to 11-12 per day from 25-30. Pain gone! Gas mild- really only feel it when I expel- not uncomfortable before and after each trip to bathroom. When I lay down to go to bed at night, no gas pains or urge to get up and go again! That's huge! 

Check it out! Patsy Catso, www.ibsfree.net has great list of high/ low Fodmap foods- in using g that and adding other info to it from other sources. Good luck! Would love to hear if you have some success / relief with it too!

laurie

Lionel, I do hope that Fodmap info is the ticket for you! Keep us posted on how you're doing! I'm still on elimination phase, not adding back any foods for awhile. Had 2 setbacks but because so much of my diet was controlled I could point to the spicy factor as another trigger for me. Because I was always so bad, spicy didn't seem to make things any worse. But on top of much better days, it's was obvious! Too bad for me! No high Fodmaps and no spicy!

good luck!

laurie

hi...book just came in the mail. looks very interesting...hopefully not overwhelming and over the top. will just have to take it one day at a time. One thing I do know, though. I do not want to become a priest or a hermit, and I am not going to give up on some of my favorites foods, whatever the consequences! Let the chips fall as they may. Best wishes, Lionel

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