Hi All - I've had my j-pouch since 1999 & really haven't had any problems. I do have dirreaha most of the time. Maybe the way I eat. Have been feeling extremely tired for the last yr or so, hair started falling that's when I went to the doc. I have severe anemia. They did an upper gi & a scope to check out my pouch. I was taking Ibepropen for headaches & naproxn for arthritis in my hands. I guess not a good combo. Any way they found in the i have Gerd, some irraration in small intestine & "erosion" in my j-pouch along the suture line. Also anal stenosis. I was to have a 4 wk follow up to see what to do for all. Gi doc booked out till July. My main concern is the erosion & how or if it heals. Also the anal stenosis. I didn't know what it was I know that I noticed my anus was/is like closing. I guess that is the stenosis. Tonight I woke up in pain from sleeping on my back which I have not really been able to do since surgery. Any way this pain in now just in my anal area. Can't get back to sleep, extremly uncomfortable to lay down. I found some pain meds in cupboard but not really helping. I kinda of remember the surgeon telling me to use my finger to stretch anus but I guess I forgot or thought sounded crazy. Sorry for the long story. What is this pain & throbbing? Thank you for any thoughts on this.
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I am experiencing the same symptoms. I have a scope in May and can report back my findings. I have a lot of anal pain..all the time. I have fissures, inflammation in the anal canal and ulcers in the distal pouch and along the anastomosis connection. I have a hard time emptying my pouch without multiple trips due to the stenosis. What helps me a bit is warm baths or sitz baths ( seems to help open up the anal canal to release stool and helps with the pain) and rectiv or nifedipine. Both are creams that bring more blood flow to the anal area to help with stenosis. You may want to talk with your GI about using these. I have been fighting multiple problems for the four years since I have had a pouch and in my case, I am pretty sure my pouch life is limited as my problems continue to get worse, not better.
Terri-
Combining ibuprofen and naproxen can get you into plenty of trouble even without a J-pouch. Your pouch may heal up fine now that you've stopped them, and hopefully you're getting your anemia under control. Dilation of your stenosis with a finger is a common technique, and generally pretty safe. Have you tried it yet? If it creates intolerable pain you may need to let the doctor do it, but that's much less convenient.
Thanks Scott! It's kinda hard to reach back there. Maybe I can get my husband to do, doubtful put won't hurt to ask. Thanks again!
The term "bathroom yoga" has been used here to describe pouch-emptying contortions, but I like it for self-dilation, too. Some relationships would weather this better than others, particularly if it's painful. In any case, it's worth experimenting with both a fronal and rear approach - perhaps you'll have a better reach one way than the other. I've not done self-dilation, but many others here have. I'd expect that plenty of lubricant would be helpful. Some folks use dilators or candles, but only do that with your doctor's guidance. If you simply can't reach, he might recommend such a tool.
I would like to add to Scott's comments. The anal dilation dors help. I am too afraid to attempt this myself but often the doctor can so it in office or while you are under anesthesia if having a scope. I am due for my scope next month and typically this helps for several months. It's a nuisance, but struggling to empty your pouch when everything is closing is far worse.
My surgeon has had to do some anal dilations for me, but he's given me the A-OK to dilate myself. I bought a dilator set online. I can't reach well with a gloved finger.
His advice was to pass the one daily (fortunately I'm open enough to pass the largest one, all is open). So I basically nightly do so, then put in my Canasa suppository. So far, so good.
The dilators are called Hegar dilators. This is the set I bought. (I know it says "uterine," but these are what my surgeon recommended for size.)
http://www.amazon.com/Graham-F...lators/dp/B001D1QRP2
Again, I can pass the biggest now. They're curved. He said face the curve to the back, and pull gently side to side and backwards (to the coccyx), but not forward. He said that's the safest; to avoid pulling towards the front.
Originally Posted by jeane:
I am experiencing the same symptoms. I have a scope in May and can report back my findings. I have a lot of anal pain..all the time. I have fissures, inflammation in the anal canal and ulcers in the distal pouch and along the anastomosis connection. I have a hard time emptying my pouch without multiple trips due to the stenosis. What helps me a bit is warm baths or sitz baths ( seems to help open up the anal canal to release stool and helps with the pain) and rectiv or nifedipine. Both are creams that bring more blood flow to the anal area to help with stenosis. You may want to talk with your GI about using these. I have been fighting multiple problems for the four years since I have had a pouch and in my case, I am pretty sure my pouch life is limited as my problems continue to get worse, not better.
Jeane I'm sorry about your pouch & all the problems. If it doesn't work out what will they do for you? Wow I feel like I know absolutely nothing. I had my surgery, my surgeon didn't really tell me anything just kinda watch my foods. Might need Imodium & follow up in a year. Never saw him because I felt fine. How often do you go in for a scope? When I just had my first one I freaked out when they wanted me to take dosolax & mirelax because that is the only thing that stands out that he told me, no laxatives.
Originally Posted by rachelraven:
My surgeon has had to do some anal dilations for me, but he's given me the A-OK to dilate myself. I bought a dilator set online. I can't reach well with a gloved finger.
His advice was to pass the one daily (fortunately I'm open enough to pass the largest one, all is open). So I basically nightly do so, then put in my Canasa suppository. So far, so good.
The dilators are called Hegar dilators. This is the set I bought. (I know it says "uterine," but these are what my surgeon recommended for size.)
http://www.amazon.com/Graham-F...lators/dp/B001D1QRP2
Again, I can pass the biggest now. They're curved. He said face the curve to the back, and pull gently side to side and backwards (to the coccyx), but not forward. He said that's the safest; to avoid pulling towards the front.
Thanks for the info. Those curved dilators sound kind of scary. What is a canasta suppository for?
Canasa is mesalamine in suppository form. I never looked awful in there, but GI put me on them thinking I may be prone to cuffitis/swelling. I'm also on Humira, but not sure where we will go with that eventually (hope was it would close the fistula; it didn't).
Originally Posted by jeane:
Rachel how often do you self dilate? Do you do this every evening?
I think I also have severe inflammation going on at this time. I can barely pass anything and I feel like I have this huge tennis ball in the back end and I have tons of pain. The tailbone pain is awful too. I think the connection is so tight that is why I continually get the fissures from straining to empty pouch. In short, the entire anal canal is a mess and canasa does nothing for me. This seems to be all mechanical and short of surgery, I am not sure anything will solve this issue.
Also, how did they diagnose the fistula and what were your symptoms? If humera is not working for that, what are you next steps?
Sorry! Missed this!
I try to do nightly, when I remember. lol
Sometimes I'm inflamed feeling, too, and have to resort to steroids these days, unfortunately.
Dx was with an MRI, then an exploratory to place a seton. I see my GI next month, and am hitting him up with more questions. He'd like me to stay on Humira a year, scope already scheduled for October, then re-evaluate.