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Posted 4/18/2017 11:27 AM (GMT -5)
Hi Everyone,
I have been through three surgeries and have had my Jloop since January 2016. I was just wondering if the leaking ever stops? I am so nervous all the time about leaking and not being able to control this. I watch what I eat when I have an event or plan to do a lot of walking but I am just hoping this will all get better soon. confused

Edited to add a subject line smile... Shaz

Post Edited By Moderator (Shaz032) : 4/19/2017 6:05:10 AM (GMT-6)

Posted 4/18/2017 1:19 PM (GMT -5)
what are you referring to by "Jloop"? Do you have a J Pouch or Loop Ileostomy?
Posted 4/18/2017 2:10 PM (GMT -5)
Well I don't know what happened to my reply? I had my entire large intestine and colon removed. I had an illeostomy reversal last January and I now have a j pouch. I have already had my one year pouchoscopy and all looked to be healing well. I just have anal leakage? I can't believe I am talking about that openly with strangers lol... I am so self conscience. I am afraid to wear any light color pants or shirts. I am going with a black suit this year just in case...I am nervous about walking any distance and I really like to walk. Should I just up the imodium dose?? Does it ever get better??? I am only 58 and I am very active. I like to wear nice clothes and have fun. Does anyone know of a good thin diaper.. sad
Posted 4/18/2017 2:52 PM (GMT -5)
I take it your leakage is happening while you're awake then? I have occasional leaks but it's only during sleep. I usually take my VSL and two immodium before bed and that seems to stop it. I know my surgeon said I can take up to 8 immodium a day if I ever needed it. Did they give you any reasoning as to why it's happening? I've heard of Kegel exercises to help strengthen the pelvic floor that has helped some with the leakage. I know pouchitis is also a cause but that seems to be generally at night time.
Posted 4/19/2017 8:16 AM (GMT -5)
Hi blksteeda, thanks for responding. Makes me feel like I am not alone here. I do have minor leakage sometimes at night but nothing to speak of. I guess I should take more imodium. What is VSL? Have not really asked doctor about any of this because I thought it was normal and I my surgeries, although they went very well, I was extremely sick and a long time getting well. Family pratictioner tried to long to save my colon and the rest is history. I guess I will work on the imodium and my diet. Thanks so much for all of your advice.
Posted 4/19/2017 9:27 AM (GMT -5)
VSL#3 is a medical food probiotic. "VSL#3 is a probiotic medical food for the dietary management of IBS, ulcerative colitis and an ileal pouch". It comes in OTC form or prescription double strength which is what I take. My surgeon uses VSL as the first course of treatment for cases of pouchitis.

https://vsl3.com/ibs-uc-ileal-pouch/
Posted 4/19/2017 11:07 AM (GMT -5)
Sometimes it's because you're a heavy sleeper and if you're fully relaxed your sphincter relaxes and leaks.

BLKSteeda makes some good suggestions, I'd try the kegel exercises or maybe some Physical Therapy treatment to increase your sphincter muscles.

Some people do really well on Tincture of Opium at night to stop their leakage; it is a prescription and can some time be difficult to get.
Posted 4/26/2017 2:02 PM (GMT -5)
I have been blessed that I personally have never had any leakages, even at night. Having said that, I know many people do deal with leakages but it seems as though it gets better for them over time. I have always heard that you look at the progression with a jpouch with months and years instead of days and weeks. Another thing I would ask is what do you eat? Because that would be a huge factor in how thick your stool is and would help prevent leakages if say you were having shakes with banana and pb in it for example.
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