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Hello!! Hope all is well with my fellow j pouchers!! Well as well as one can be with the pouch!! Anyway last time I posted I was dealing with fecal incontinence from my j pouch and bleeding and pain from my rectum...so my colorectal surgeon wanted to do an endoscopy to see if anything was wrong with the pouch. I went in on Friday the 27th to have it done but after waking up was told my doctor couldn't see anything because my poop was backed up and apparently the enemas I did didn't clear things out!! Well I was admitted due to lots of blood back there and pain and also to get things cleared out so a proper scope could be done! So from Friday to Sunday I drank 3 gallons of go lytley..very nasty disgusting drink that makes you go like hell..and I was on clear liquids so I was starving, in pain and weak from pooping but I was cleaned out so I guess mission was accomplished!! So Monday I went to have the endoscopy and once awake from the procedure I was told everything looked normal and nothing abnormal was found so basically my doctor came and told me there was one more test that could be performed called a defecogram where they basically watch me poop through x Ray and see what is going on inside that may be causing my incontinence and pain. I hate these type of test it's embarrassing and just plain uncomfortable but the worst part yet is my doctor says he is doing the test just to rule out all options but is pretty sure my sphincter muscle is ruined which is causing my incontinence and I'll have 2 choices go back to the ostomy or deal with pooping on myself for the rest of my life!! I have been devastated every since I can't sleep, eat, or think straight..I can't believe I've went through over 20 surgeries, dealing with the temp ostomy, and days months and years of pain just to go back to a damn ostomy!! I can't believe this crap!! There is a small chance that something may be wrong with the pouch and can be fixed with surgery which the test will show but since my scope was clear he doesn't think that's an issue he basically thinks about 99.9% it's my sphincter muscle and that other 1% left that it's fixable!! I am going crazy here dk how much more I can take but I definitely can't take going back to that ostomy permanent!! I'm engaged supposed to be getting married this September we put the wedding off long ways so I could be recovered and hopefully to some point of normal by then,.now I may be back with a bag on my wedding day I am just sinking into depression..I want to be happy look pretty and feel pretty on my day and with the bag there is no way that's happening..I hated myself with that bag!! Why is this happening to me I am a good person..I don't deserve this nobody does!! Somebody please tell me things can change and get better without getting the BAG AGAIN!!!???

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did they do the anal manometry test? they stick a probe in your butt and you perform squeezing tests. they measure your sphincter muscles to see how they are working. Before my takedown last April they said mine were normal but I still have very minimal leakage sometimes. I am told it may be some nerve damage from having my pouch totally redone with a mucousectomy.

BritBrat, Sorry to hear what your going through.  Please do try and remain postiive.  It doesnt sound like the doc has given up on you yet and from what i understand they can do an operation to repair sphinter muscles, maybe that will be an option?  Failing that as Scot says there is the K pouch that may be an option

 

I hated life with a ostomy bag tbh, but i hear end ileos are much easier to live with, so even the worst case scenario might not be as bad as your fear right now.   Wishing you all the best

Ok so still haven't gotten any test results but one reading from radiologist thinks I have a fistula and right noway actually thenjoy last 3 days I've been in excruciating pain..I'm having lots of fecal incontinence and it hurts like hell coming out..the burn makes tears come into my eyes and I'm bleeding and the spasms are killing me..the burn seems to be coming from deep inside my anus..could this be a fistula?? Or is there anything I can do to lessen the pain?? I'm already on percocets 10mg valium 10mg and morphine 15mg also stool softner 3 times a day and miralax..I use vaseline and calmoseptine cream on my butt which kinda helps but the inside of my butt is the big problem I have been crying all day because the spasms are coming every 15-20 minutes and I dk how much more I can take this is getting g really bad..I've called my doctor and am waiting for a call back I'm literally dying from pain..somebody please tell me there is a med I can take to help with this burning

 

Gee, you are already taking a boatload of powerful meds, so I do not recommend  you seek more. Generally, oral pain meds are not very effective on anal pain. The pain you describe sounds more consistent with an anal fissure than a fistula. Yes, it is very possible to have both. It is also possible for your doctor to miss a fissure when doing a scope, unless he does a careful visual exam of the anus before inserting the scope. A fiisure can hide in the folds of the anal canal.

Hot sitz baths and topical pain meds are probably your best bet. Unless you can control the incontinence, you may need a temporary ileostomy until this is sorted out. Otherwise, the pain could drive you insane! If you need to, go to the ER for help. There is a huge concentration of sensory nerves in the anal anal.

I hope you get an answer very soon.

Jan

Mano Tory and anal ultrasound (and even the old finger probe) can tell a lot about how the sphincter is working (or not). It is possible to get surgery to tighten the sphincter. I had that done after surgery to fix an anal fistula damaged my sphincter. It helped a lot, but I still had incontinence. Bulking the stool with fiber and Imodium or even narcotics helps too. I did notice when on heavy mess after I shattered my wrist, that high doses of narcotics actually made my incontinence worse-especially while sleeping. I ended up getting a spinal cord stimulator which, along with bulking the stool as above, and tucking a small cotton ball in my anus, has allowed me to be very functional and pretty continent most of the time-I work full time, workout, etc. There ARE options to treat incintinence beside returning to perm ostomy.

I hope they are able to sort out what is causing your pain-sounds very difficult.

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