Have jpouch since 2008 and have night accidents almost every night. Do any of you know of surgical treatment for this? A friend has this problem with urinating but his surgeon inserted a mechanical valve to turn the "spigot" on and off. So maybe something exists for the bowels too? Other than this issue, I get along very well....2 blockages a few years ago and a minor pouchitis case I'm taking Cipro for right now. The Cipro is working
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I don't think you'll find a mechanical valve for poop.
Does the Cipro stop the nighttime accidents? What things have you already tried to stop the accidents?
I think what you are thinking of is an artificial sphincter or nerve stimulator implant. The artificial sphincter works reasonably well for urinary incontinence, but not so much for fecal incontinence.
Thank you, Jan. The attachment was interesting. I appreciate your reply.
Thanks for your reply. The 500mg Cipro I'm taking is for pouchitis, and it stopped it in its tracks. It also made my road trip and meetings a lot easier.
I've tried about everything to control the night time accidents which happen 1 to 3 times per night at least 95% of the time. I have resorted to just accepting it and take measures to protect the bedding, including the use of Depends at night. A mechanical solution is probably the only things I can reasonably hope for. I don't mean for this to sound like I'm on a downer because I am not. Friends and family say I am practically always cheerful and optimistic, and that really is the way I like to live my life. All I have to do is to consider the challenges that other people face to realize how lucky I am.
If you are continent during the day, then your sphincters are working. But sphincter relaxation during deep sleep is normal. Some of us have more relaxation than others. Imodium is supposed to improve sphincter tone, but I suspect you have already tried that. You are not taking any medications to enhance sleep are you? Sleeping pills, tranquilizers, etc.?
I do have some daytime accidents where I feel it coming without enough time to react. But those are less frequent than the highly predictable night time ones. I take Loperamide which I buy at Costco (generic Imodium and much less expensive) I also take psyllium powder (or caplets when traveling) before meals, and with as little liquid as possible. I take no sleeping aids or tranquilizers - don't need them as I drop off quickly. My surgeon said he took more of the rectum than he had hoped to take, so that may the problem. I was faithful about kegal exercises before having the the take down. Still do them.
I love your Machiavelli quote; little did he know how that phrase would be used!
Yes, unfortunately all the nerves of continence are in that delicate area between the rectum and the anus (the dentate line). Even in the most skilled hands, there is a risk of permanent nerve damage leading to various levels of incontinence. After a year or so, not much chance for significant improvement if that is the case.
Does the Metamucil cause you any gas or urgency? For some of us, psyllium acts as an irritant laxative and causes excess gas. I am one of those who is intolerant of it. I am OK with methylcellulose (Citrucel) or wheat dextrin (Benefiber) or inulin (Fiber Gummies). You may want to try experimenting with the different fiber supplements to see if they work better for you. I once thought they were all the same. I was wrong!
Thanks for the tip on trying other products. The psyllium doesn't seem to present problems but it is worth comparing. I use it because my wife has used it for years as what she thinks is a matter of good health..and she is disgustingly healthy.
Well, this is a case where we are all individuals with individual tolerances. Since your options are limited, it makes sense to rule out the psyllium as an issue, particularly since there are other options as thickening agents.
Hopefully your wife appreciates her easy good health, and does not imply that you somehow contributed to your own misfortune! I am lucky (and also unlucky) that everyone in my family is very understanding, since my husband, my two sons, and myself all have UC.
My wife of nearly 40 years is very supportive, understanding and helpful, and she was a rock during my surgeries and recoveries. You really have your hands full with the four of you dealing with UC. That was my condition for several years, then came the big C discovery. Really, in my case I call it the Little C because my doc caught it early enough to keep it from spreading. I really appreciate your comments and suggestions. Thank you!
I unfortunately have to take antibiotics all the time. If I don't, I will have nighttime accidents. This is antibiotic-dependent pouchitis, and while I wish I didn't have it, I'm lucky that the antibiotics work just fine for me. This is why I'm not sure I understand your answer to my question about whether the Cipro stopped the nighttime accidents. You answered "the 500mg Cipro I'm taking is for pouchitis, and it stopped it in its tracks." I'm not sure if you meant that the Cipro stopped the nighttime accidents or stopped the pouchitis. If it stopped the accidents, and they came back after the Cipro was done, then it's possible you need to stay on Cipro and/or other antibiotics longer (perhaps much, much longer).
Have you been checked for cuffitis?
For what it's worth - I developed night time incontinence about 7-8 yrs into the jpouch - very serious incontinence, where I'd have anywhere from 2 - 8 accidents per night. I was ready to have the jpouch removed. Eventually, I developed a fistula (probably unrelated to the incontinence), which sent me to the Cleveland Clinic, where the docs got my pouchitis and severe cuffitis under control with antibiotics, canasa and anucort suppositories.
I still use the suppositories for maintenance, but have been off antibiotics for over a year. I have added 2 immodium to my routine, taken before bed, along with probiotics and homemade yogurt. I now rarely have accidents, maybe 1-2 per month, depending on what I eat (damn you, sweet potatoes!).
Cuffitis is just something else I'd suggest checking out if you haven't already. I feel for you - hope you can get this figured out.
Thank you Nancy. I will look into the possibility of cuffitis. I have heard of it but don't recall being checked for it. My surgeon has been terrific and very thorough but I will ask. I am not familiar with canasa or anucort suppositories, so perhaps there is a gem there. I really do get along very well except for this issue. And I travel a lot on business, so am always taking extra protection, bed pads, etc with me. I envy your limited accidents!
I unfortunaltely have to take antibiotics all the time. If I don't, I will have nighttime accidents. This is antibiotic-dependent pouchitis, and while I wish I didn't have it, I'm lucky that the antibiotics work just fine for me. This is why I'm not sure I understand your answer to my question about whether the Cipro stopped the nighttime accidents. You answered "the 500mg Cipro I'm taking is for pouchitis, and it stopped it in its tracks." I'm not sure if you meant that the Cipro stopped the nighttime accidents or stopped the pouchitis. If it stopped the accidents, and they came back after the Cipro was done, then it's possible you need to stay on Cipro and/or other antibiotics longer (perhaps much, much longer).
Thank you Scott,
The Cipro is for pouchitis. But based on your comments and another comment from Nancy, I will discuss antibiotics with my surgeon. I am not quite finished with the Cipro prescription but have had night time accidents during the time I have been taking it. So I suspect that will not be a solution but it is still with investigating. Nancy also mentioned using antibiotics, canasa and anucort suppositories. I'm not familiar with the last two but will check them out. I greatly appreciate your comments and questions. You, Nancy and Jan have been very helpful!