I have purused the threads somewhat in the past, it's been informative but not very helpful. At my 3 month follow up, my surgeon asked how I was doing. I expressed I am in a lot of pain. "Hmm, that shouldn't be" and when we discussed bowel frequency, I'm rather on the high side and he says" that's too much, you should take immodium". I never said it was diarrhea, often it isn't, and immodium is ineffective anyway. Much of is at night. As a result, I can't get much sleep at all most nights, typically 2-3 hours. I mentioned this in another thread, and got some feedback but not anything useful.
At nearly 6 months after takedown, and 9 months after my colonectomy/illeostomy and j-pouch creation, I'm still having problems.
piriformis syndrome? - which is like a muscle spasm or nerve irriation, quite crippling! I'm thinking I've had this a few times now. I am getting more and more intense pressure near the anus, like there is a softball shoved up in there, but nothing comes out.
Frequency of BM - After all this time, it's still 10-20 times per day, with a high of 27 and a low of 7 in the last 90 days. 1/2 or more of it between 9PM and 5AM when I should be sleeping. It sometimes feels like broken glass, or razor blades. It is rarely without pain. Sometimes it burns intensely as well.
butt burn - I can treat this on the outside, but how do you treat it when it feels (and seems to be) on the inside?
It seems early for pouchitis, and this all started about one week after the take down, and has been up and down. I have had many bad weeks, and have had only a couple of good weeks. I can't even nap. Being horizontal brings out the worst. I still have my stash of sulfasalizine from before, that helps, fiber, and ibuprofen. On really bad nights I resort to the percosets left over from surgery just to ease the pain at night because nothing else will work.
My surgeon is a pretty awesome surgeon, but I'm feeling let down with the very weak follow up.
Apologies in advance if I sound ignorant or disorganized. It's just so much and it'w wearing me out. It's starting to make my job and personal life miserable from lack of sleep and nervous about going more than 30 minutes without a bathroom break. It comes sudden and intense sometimes.
At nearly 6 months after takedown, and 9 months after my colonectomy/illeostomy and j-pouch creation, I'm still having problems.
piriformis syndrome? - which is like a muscle spasm or nerve irriation, quite crippling! I'm thinking I've had this a few times now. I am getting more and more intense pressure near the anus, like there is a softball shoved up in there, but nothing comes out.
Frequency of BM - After all this time, it's still 10-20 times per day, with a high of 27 and a low of 7 in the last 90 days. 1/2 or more of it between 9PM and 5AM when I should be sleeping. It sometimes feels like broken glass, or razor blades. It is rarely without pain. Sometimes it burns intensely as well.
butt burn - I can treat this on the outside, but how do you treat it when it feels (and seems to be) on the inside?
It seems early for pouchitis, and this all started about one week after the take down, and has been up and down. I have had many bad weeks, and have had only a couple of good weeks. I can't even nap. Being horizontal brings out the worst. I still have my stash of sulfasalizine from before, that helps, fiber, and ibuprofen. On really bad nights I resort to the percosets left over from surgery just to ease the pain at night because nothing else will work.
My surgeon is a pretty awesome surgeon, but I'm feeling let down with the very weak follow up.
Apologies in advance if I sound ignorant or disorganized. It's just so much and it'w wearing me out. It's starting to make my job and personal life miserable from lack of sleep and nervous about going more than 30 minutes without a bathroom break. It comes sudden and intense sometimes.
