My dilations were in the sigmoid. They would last a week and the stricture of soft tissue would return.
My incontinence was thru the rectum (alittle) but the majority of the time it was thru my fistulas. My CRS said if we get the fistulas repaired there would be little to no issues with incontinence. Remicade did not heal my fistulas. I was on the max 10 vial dose for 6 months and then went down to 5 vials. It was every 4 weeks then it went to every 8 weeks after we all agreed it was not healing fistulas but it was controlling my other symptoms. I too could not sleep at night due to the accidents. Could your accidents be thru the fistula vs. thru the rectum/anus? Perhaps that is why you do not wake up...since the output is going thru the fistula there isn't any feeling or urge to go?
My GI and CRS work together on my issues. Rarely do they disagree-however they could not agree on the dilations. My GI did not want to do them because he feared he would "pop" me. Eventually both of them were in the operating room while one observed and the other performed the dilations. The CRS had to push for the dilations.
Will your CRS speak with your GI? What reason does your GI give for not wanting you to have dilations? Is it that he does not want to do it or he just doesn't want it done period? My CRS told my GI if he wouldn't or couldn't do it he (the CRS) would. (Only then did my GI agree)
I too was not ready for a colostomy. The stricture took that decision away from me. The colostomy is not bad, just different.
My thoughts are with you. I hope you find some relief--sooner rather than later.
Post Edited (clo2014) : 12/30/2016 6:55:22 AM (GMT-7)