Past few months noticed difficulty with emptying the pouch completely. Have to really strain to overcome the sense of blockage. Would this be more of anatomical issue (stricute) or a manifestation of pouchitis or cuffitis?
Replies sorted oldest to newest
Don't strain!!!!!!!!!!!!!! You will end up with hemorrhoids.....or worse. If it is an anatomical issue stool will feel like it's hitting a wall. If it comes out uncleanly or irregularly in dribs and drabs and not in smooth, clean gushes, it could be pouchitis. Unfortunately, I speak from significant experience on both. 2 surgeries for anatomically blocked stool (septum developed in pouch), and 20 plus years of treating pouchitis.
I have this all the time ever since my takedown a year ago. I am not sure what mine is from but it could be my chronic pouchitis, but I am also on cipro.
I regularly have problems completely emptying which has caused me to get pouchitis quite a few times. I posted this in another discussion but thought it might help. I have to dialte and use an enema to clean myself out or else I'll get pouchitis.
I have had my j pouch for about two years. About 6 months in I started getting pouchitis regularly. Tons of urgency day and night. Up lots at night. I would take Cipro and it would go away for a few months and then come back again. We tried all sorts of tests to check out my intestines and see what was happening. Eventually my surgeon saw that I needed to dilate my rectal cuff inside regularly. I was terrified to do this. He said I needed to get a dinner candle and shave it down until it was the size of my thumb. And then I needed to insert the candle into my anus and wait a few minutes so that I was dilated. I started doing this everyday. It has changed my life. It was hard at first but now it’s just part of the routine before I go to sleep. I’ll dilate myself and go to the bathroom quite a bit so that I can sleep better at night because I’ve emptied out.
I still got pouchitis a few times after I started using the candle though so I have now started giving my self a tap water enema every night after I dilate with the candle. I have been doing this for about five months and have felt the best yet. I do the dilation and then the enema every night before I go to bed. It sounds bad but I just watch Netflix and it takes about 20 minutes for the whole thing. Just part of my routine now and not a huge deal. For how it makes me feel, it is absolutely worth it. I usually take 2 immodium when I wake up and two in the evening. Hardly ever need more than that. I regularly sleep through the night without having to use the bathroom now that I’ve been doing the enema. And I normally eat whenever I want. Sometimes eating late causes issues but not like it used to before I was doing the enema.
It’s not perfect but it has changed my life and made things so much more manageable. I’m 31 years old. Have a j pouch because I got colon cancer and 28 and they had to take my entire colon. I’m very active and love running and playing basketball. These forums have helped me so much that I thought it was time I started posting things that have worked for me.
Is this method still working for you? When you shave the candle is it the length and width of your thumb? Do you insert it in a glove or something for fear it could break off and do you move it around at all or just let it sit? Also do you purchase a fleet enema and just fill with warm water? I'm having so many issues with a stricture I'm desperate to try anything.
I too have had problems for the past couple of years feeling blocked and needing to strain. I have had my Jpouch since 1991. I never really noticed that many problems with it until the past five years. I had a balloon dilation procedure a little over a year ago, but I never noticed much difference afterwards. Lately I have been doing something similar to what Wes mentioned, but not with a candle. I purchased a set of Hegar dilators on the web. You can find them starting around $20. They remind me of what my surgeon at Duke (now retired) used to dilate me with manually when I needed opening up in visits right after my surgery. He was very cautious and gentle. I could tell it made a difference. I recommend relaxing and using good lubrication. I have been combining this at times with a warm water enema, but I always worry about the enema causing a leak in my pouch. Although if that were true, the normal bowel contents would also probably be causing a leak. After reading some comments on the forums here, I have been leaving the dilator rod in for at least a minute, which seems to be helping. Be very careful and do not push it in much further than the point where you feel the tight opening giving way. I am finding doing that and repeating it seems to be working to relieve the blockage. I would not use the smallest ones, but you might need to work your way up to using the larger sizes. I would say using one around the same size as your thumb is a good "rule of thumb". I can tell you from personal experience that straining is not good for you in so many ways. I feel it contributed to the small hernia on my lower abdomen. None of this is medical advice. Always be very careful when it comes to your pouch.
I had similar symptoms for a couple of months, three years ago. Went to the doctor, where I was it was most likely a mild flare. I knew it didn't feel the same as usual, but figured he knew what he was talking about. Matters progressed until I was in severe pain, vomiting, etc. After five days in the hospital trying to get things moving, they discovered through testing that I had a complete blockage caused by adhesions wrapped around the small intestine (I had my colon removed 15 years ago). After surgery to repair the blockage and remove some adhesions, I was OK, but recovery was not fun. The doctor admitted that my original symptoms were most likely a chronic partial obstruction. I guess my point is to trust your instincts and make sure the doctor knows you mean business.