Hello Ladies,
I'll give you a brief history. Diagnosed with UC in 2009. Tried all meds, never any remission. I had a really bad flare in nov. 2011. Hospitilized for 10 days and released way before I was ready. I ended up on Remicade every 8 weeks which in the beginning helped tremendously. Skip to October 2012, I went from being on a regular dose, to a double dose every 4 weeks to no avail. I ended up with a rectovaginal fistula and abscess.
One month later I had a total colectomy with end illeostomy. My diagnoses was now possibly Crohns but when the pathology came back from the Cleveland Clinic it was still UC. Yay, small victory. In march 2013 I had a hand sewn J pouch made with a diverted loop ileo. I was supposed to be all reconnected by may 31st. Never happened. I'd been having a lot familiar pain. On may 31st, they drained a new abscess and discovered that it was caused by a small leak in the pouch which caused a new fistula and abscess. The original rectovaginal fistula & abscess had healed at least. I had a mushroom drain placed. In June, excessive landed me back in OR, removed the drain, one week later 104F fever landed me back in the OR, drain abscess new mushroom drain. Also surgeon suspected hidden abscess that he couldn't find nor was it detectable on CT scans.
August 2, back to the OR, with excessive pain, different surgeon moved drain into the fistula, after a week in the hospital I returned home. After 30 hours of being home I began to feel familiarly very ill. 104F fever, rushed to ER, blood pressure plummeted to 77/33. Rushed to Cleveland from buffalo with an ever growing giant abscess on my butt. Worse ride ever! Back into the OR where the hidden abscess was finally found. Unfortunately it had become huge. They opted to take out the mushroom drain and put it four setons.
Since then I've had 5 more surgeries scraping infected tissue out and opening up a surgically made hole in my left bum cheek where the setons come out to meet the other ends of them that come out of my rectum and tied in a knot outside my body.
Good news is the cavity and fistula are now finally shrinking and I think I see a tiny light at the end of this stupid tunnel
Ok so it wasn't a quick history but I tried.
My question is, I know that I, as well as many women with pouches have awful periods. I also was having tremendous pain during ovulation. I have a history of a ovarian cysts. I started the birth control pill in October to shorten my periods/pain, and to squash the pain I was having during ovulation. I no longer ovulate due to the pill, but I'm having worsening pain every month during this time. I'm up all hours of the night with severe pelvic pulsating pain that spasms right down to my rectum and seton hole, and awful pouch spasms. it feels as though my rectum and vagina and everything in it are pushing to get out. The pressure down there is awful. This is the 6th day/night I've been in agony. Unless I take hospital doses of Percocet, valium and dilaudid I can't walk, sit or lay down without wanting to cry. Which I did this morning for an hour. This use to last only a few days. I'm 33, I have two young children and I am always sick or sore or recovering from surgery. I am scheduled to have an ultrasound today. I have history of ovarian cysts, but my GYN couldn't feel anything in there. I felt the pain though.
Does anyone else have this problem? If so, is there anything you can do about it. I'm told once I am reconnected, this will no longer be an issue. My biggest fear is that I go through all of this to save my pouch and then still have the same problems. Not to mention all the new ones that I'll have. (Butt burn, living in the bathroom at first, etc.)
Sorry that this post is so long. I just need some guidance.
Thanks for listening.
Jennifer
I'll give you a brief history. Diagnosed with UC in 2009. Tried all meds, never any remission. I had a really bad flare in nov. 2011. Hospitilized for 10 days and released way before I was ready. I ended up on Remicade every 8 weeks which in the beginning helped tremendously. Skip to October 2012, I went from being on a regular dose, to a double dose every 4 weeks to no avail. I ended up with a rectovaginal fistula and abscess.
One month later I had a total colectomy with end illeostomy. My diagnoses was now possibly Crohns but when the pathology came back from the Cleveland Clinic it was still UC. Yay, small victory. In march 2013 I had a hand sewn J pouch made with a diverted loop ileo. I was supposed to be all reconnected by may 31st. Never happened. I'd been having a lot familiar pain. On may 31st, they drained a new abscess and discovered that it was caused by a small leak in the pouch which caused a new fistula and abscess. The original rectovaginal fistula & abscess had healed at least. I had a mushroom drain placed. In June, excessive landed me back in OR, removed the drain, one week later 104F fever landed me back in the OR, drain abscess new mushroom drain. Also surgeon suspected hidden abscess that he couldn't find nor was it detectable on CT scans.
August 2, back to the OR, with excessive pain, different surgeon moved drain into the fistula, after a week in the hospital I returned home. After 30 hours of being home I began to feel familiarly very ill. 104F fever, rushed to ER, blood pressure plummeted to 77/33. Rushed to Cleveland from buffalo with an ever growing giant abscess on my butt. Worse ride ever! Back into the OR where the hidden abscess was finally found. Unfortunately it had become huge. They opted to take out the mushroom drain and put it four setons.
Since then I've had 5 more surgeries scraping infected tissue out and opening up a surgically made hole in my left bum cheek where the setons come out to meet the other ends of them that come out of my rectum and tied in a knot outside my body.
Good news is the cavity and fistula are now finally shrinking and I think I see a tiny light at the end of this stupid tunnel
Ok so it wasn't a quick history but I tried.
My question is, I know that I, as well as many women with pouches have awful periods. I also was having tremendous pain during ovulation. I have a history of a ovarian cysts. I started the birth control pill in October to shorten my periods/pain, and to squash the pain I was having during ovulation. I no longer ovulate due to the pill, but I'm having worsening pain every month during this time. I'm up all hours of the night with severe pelvic pulsating pain that spasms right down to my rectum and seton hole, and awful pouch spasms. it feels as though my rectum and vagina and everything in it are pushing to get out. The pressure down there is awful. This is the 6th day/night I've been in agony. Unless I take hospital doses of Percocet, valium and dilaudid I can't walk, sit or lay down without wanting to cry. Which I did this morning for an hour. This use to last only a few days. I'm 33, I have two young children and I am always sick or sore or recovering from surgery. I am scheduled to have an ultrasound today. I have history of ovarian cysts, but my GYN couldn't feel anything in there. I felt the pain though.
Does anyone else have this problem? If so, is there anything you can do about it. I'm told once I am reconnected, this will no longer be an issue. My biggest fear is that I go through all of this to save my pouch and then still have the same problems. Not to mention all the new ones that I'll have. (Butt burn, living in the bathroom at first, etc.)
Sorry that this post is so long. I just need some guidance.
Thanks for listening.
Jennifer
