Hello everyone I have posted about my issues since my j pouch and few times and since my last post nothing has changed but my new question is why do I have incontinence very badly for weeks and then one day it's like my butt explodes and it all comes out and then for about 24 to 48 hours I'm poop free no leaks, BM, or incontinence and then bam right back to leaking and incontinence!! This is so stressful!! I can't do anything or go anywhere without having to take wipes, vaseline and calmoseptine ointment!! My butt hurts all the time from it being raw and bleeding..I can't sleep from having to get up and change myself..the incontinence happens all day and night..I live in the bathroom and it sucks..I can never feel myself having the leaks until it's out and starts irritating my skin..and when I do get the urge to poop I have to strain my guts out but then only a little comes out and then I feel like I haven't completely emptied..somebody please tell me it gets better or that something can be fixed!!!??? My doctor thinks my pouch may need some revision or its folding up on itself when I'm trying to empty..I dk but I hope like hell somebody can tell me something soon!! I am not going back to that damn bag!! I was a miserable soul with it..I just can't see myself going back after all the surgeries, pain and suffering I endured to get rid of it..there has to be another way!! Please help..does anyone know of another doctor anywhere that specializes in incontinence or sphincter repair or anything similar to my problems..anything will help my doctor has tried every thing he knows except going back to an ostomy and I can't give up and go there..no way!!
Replies sorted oldest to newest
I suggest that you go to a medical center that deals with problematic j pouch problems. The Cleveland Clinic is well known and respected for this. I definitely agree with your wanting to avoid the bag and would first attempt to save your j pouch, even if it means a reconstruction. If your j pouch problem cannot be resolved to your satisfaction, there are two procedures that do not require having an external bag: the k pouch and the BCIR. There is plenty of information available on the internet for both of these procedures and they have a high success rate as well as patient satisfaction with them.
I had a suboptimal j pouch for 30 years and adapted the best I could so that I would not end up on the bag. I experienced high frequency, leakage and butt burn. Finally, I had to throw in the towel when I developed recurrent high grade dysplasia in the anal canal plus severely weakened sphincter muscles that likely resulted from removal of a malignant polyp in that same area. I researched my options and decided to get a BCIR. With this procedure, I have a button hole size stoma inconspicuously located below my belt line and covered with a small absorbent dressing. I empty the internal pouch (created with a short section of my small intestine) 4-5 times a day at my convenience with a small plastic catheter. I eat almost anything I want and can do any physical activities without limitation. I feel and live like a normal human being. Please excuse the long narrative, but many doctors do not know about these procedures or may provide misleading or incorrect information about them. Please post any additional questions you have and feel free to send me a PM. Best of luck!
Bill
Brit, it sounds like your doctor's still haven't worked out what's wrong. That's critical to making a good decision about treatment. Have you had a defecogram? That's the (somewhat embarrassing) test that observes the pouch function during defecation. If not, your current doctor left the job unfinished.
Bill's suggestion of Cleveland Clinic is a good one if you can manage it. Dr. Bo Shen specializes in problem pouches. If you're in Louisiana as your profile suggests you might be able to find a J-pouch expert at Tulane or Ochsner.
Good luck!
Thank you for your responses I have had a decogram and I'm currently seeing a doctor at oschner in New Orleans I'm actually at the appointment now where my doctor will read the results of my test to see if they can spot anything wrong..hopefully it's a quick fix or nothing wrong at all..I dk but this has to stop
I was thinking about the Cleveland clinic but dk how I would afford it I lost my job 2 years ago when all my colon issues started..I was in the hospital for 3 months and my job had to hire someone else so I'm kinda low on funds
Sounds like your bowel is spasming. I've had this a lot of times in the past 5 years. It could a range of things like dehydration, low magnesium, mental stress, physical stress like lack of sleep and sitting directly on your rectum for too long can cause rectal spasming, too much fat, caffeine and other foods that irritate your gut (for me that includes popcorn and chocolate). I suggest going to listentoyourgut.com for tips on proper elimination positions, abdominal massage and good gut bacteria
I notice that this thread jumps from 2017 to present day. I think it's helpful if we update and provide outcomes where possible. That way when someone is searching the particular topic at at later date the information is there. It's also a matter of having interest and concern for individuals' well being. For example, BrittBrat88 I'm wondering how it worked out for you. Thanks.
Scott F posted:Brit, it sounds like your doctor's still haven't worked out what's wrong. That's critical to making a good decision about treatment. Have you had a defecogram? That's the (somewhat embarrassing) test that observes the pouch function during defecation. If not, your current doctor left the job unfinished.
Bill's suggestion of Cleveland Clinic is a good one if you can manage it. Dr. Bo Shen specializes in problem pouches. If you're in Louisiana as your profile suggests you might be able to find a J-pouch expert at Tulane or Ochsner.
Good luck!
Dr Shen is in NYC now