With end ileostomy and a j pouch that leaks bloody mucus it's been 18 with still no set date on repair scheduled what r the chances of once takedown which can be 2-3 years without it have been used be successful or fail?? Please give me imput
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If I understand correctly, you have a rectovaginal fistula. If you are still bleeding after more than a year of diversion, i don't know that things look good. But, it all depends on where you are bleeding from. If it is the fistula, then hopefully repairing that defect will fix that. But if it is the pouch, and you have been on various drugs to control it, I would be. As concerned as you. My big question would be if this really is Crohn's and not UC.
Jan
Jan
Hi Jan, the whole thing is I don't know anymore, I'm on the verge of a nervous breakdown. I left from one hospital where I had multiple surgeries including VF
Always complained of rectal leakage and symptoms( it coming through vaginally)including pelvic pain. In 2009 started having problems with my periods, which lead to endometrial ablation and the roller coaster ride began. The pelvic pain increased. The gyno suggested getting a hysterectomy to remove the inflammation which would relieve some of the pelvic pain.the surgery which was done which resulted in temp ileo because the ablation resulted in a perforation at the top were j pouch began. He told me that he could not find fistulas n if there was a pin hole it would heal due to div. ileo. No signs of Crohns.19 months later get take down n well 18 of not using reservoir was going to bathroom every 20 mins. Telling me to take both immodium n lomotil together. So at that point was hardly going maybe 2-4 x with excruciating difficulty which we all know is not the cause with us j pouchers. This was may of 2011. They said it would adjust n that at least I wasn't having any leakage n the hole must of closed.
Well the back n fourth complaining being sent back home. I ended up passing out while driving due to the inflammation that got so bad it blocked my kidney!
Which landed me in hospital for six months!! First getting j tube for kidney, then realizing they forgot an ovary which had cysts , multiple adhesions. After 1.5 weeks where the jack Pratt tube was exploded from my body causing all my stitches to open up perforation in intestine. Keep me in hospital with abdominal wall wide open having stools gush out from all over. Was told these thing happen, complications..... They went back 8 weeks later but again more complications, wound healed but the hole were the j Pratt was reopened and was told it was fistulas... 3weeks later they put in a stent which failed.. Finally said we need to put back an ileo but complete detach so end ileo that way the diversion would allow to heal. Unfortunately while performing that surgery they damaged the other kidney so back in or 48 later. I asked if it could of been crohns they said no sign of it. I tried to understand why they wouldn't fix the fistulas instead of again hoping it would fix on its own? They said that after body would get some rest they would be able to poy a special stent in and then reverse everything. I was being seen by so many drs. And everyone gave me a different sinerio but in the mean time I was fighting to stay alive they over dosed me with steroids that lead to 20 pd gain in 24 hrs?!! Which the error was only discovered months later long story short I came out of there on my hands n knees after 8 surgeries in 6 months...sorry for all the blahbaling! Conclusion changed hospital was told that there was many poor judgements done. He removed a mushroom plug that the others left in that was rotting. He decided it was best to put me under to go have a look and see if by injecting air in reservoir there would be a leak and confirm VF? Unfortunately to much pressure ended up more complications pneumo thorax of both lungs ended up intubated
Always complained of rectal leakage and symptoms( it coming through vaginally)including pelvic pain. In 2009 started having problems with my periods, which lead to endometrial ablation and the roller coaster ride began. The pelvic pain increased. The gyno suggested getting a hysterectomy to remove the inflammation which would relieve some of the pelvic pain.the surgery which was done which resulted in temp ileo because the ablation resulted in a perforation at the top were j pouch began. He told me that he could not find fistulas n if there was a pin hole it would heal due to div. ileo. No signs of Crohns.19 months later get take down n well 18 of not using reservoir was going to bathroom every 20 mins. Telling me to take both immodium n lomotil together. So at that point was hardly going maybe 2-4 x with excruciating difficulty which we all know is not the cause with us j pouchers. This was may of 2011. They said it would adjust n that at least I wasn't having any leakage n the hole must of closed.
Well the back n fourth complaining being sent back home. I ended up passing out while driving due to the inflammation that got so bad it blocked my kidney!
Which landed me in hospital for six months!! First getting j tube for kidney, then realizing they forgot an ovary which had cysts , multiple adhesions. After 1.5 weeks where the jack Pratt tube was exploded from my body causing all my stitches to open up perforation in intestine. Keep me in hospital with abdominal wall wide open having stools gush out from all over. Was told these thing happen, complications..... They went back 8 weeks later but again more complications, wound healed but the hole were the j Pratt was reopened and was told it was fistulas... 3weeks later they put in a stent which failed.. Finally said we need to put back an ileo but complete detach so end ileo that way the diversion would allow to heal. Unfortunately while performing that surgery they damaged the other kidney so back in or 48 later. I asked if it could of been crohns they said no sign of it. I tried to understand why they wouldn't fix the fistulas instead of again hoping it would fix on its own? They said that after body would get some rest they would be able to poy a special stent in and then reverse everything. I was being seen by so many drs. And everyone gave me a different sinerio but in the mean time I was fighting to stay alive they over dosed me with steroids that lead to 20 pd gain in 24 hrs?!! Which the error was only discovered months later long story short I came out of there on my hands n knees after 8 surgeries in 6 months...sorry for all the blahbaling! Conclusion changed hospital was told that there was many poor judgements done. He removed a mushroom plug that the others left in that was rotting. He decided it was best to put me under to go have a look and see if by injecting air in reservoir there would be a leak and confirm VF? Unfortunately to much pressure ended up more complications pneumo thorax of both lungs ended up intubated
So sorry Jan, again I'm new to this sight n well when I start writing I go on n on because a lot has happened n is still happening. I touched the post button by mistake but probably was a sign... I get carried away writing not because I want to but I would your opinion, or someone in a similar situation.
Where do I post my long story? My story is complexed and I could benefit from the support on this sight. I'm just afraid of writing to much
Where do I post my long story? My story is complexed and I could benefit from the support on this sight. I'm just afraid of writing to much
General discussion is a good place. May I suggest that you start a new paragraph for each new surgery or complication? It is difficult to follow the story in one huge flow of worrds like that.
It seems that you have had a multitude of serious complications. Sometimes, minor misjudgements turn into huge complications. Once you are weakened, you are sort of "set up" for a cascade of unfortunate events.
Having a Crohn's diagnosis would help make more sense of this, but it sounds like they have not seen evidence of it, at least not yet.
The problem with fistulas is thet sugical repair is not always successful. And, with you being in a more or less critical state, it puts you at further risk. So, now that it has been a long time, it is appropriate to think about going in and getting it fixed. I imagine that for you, the challenge will be finding a surgeon you trust, and with your history there may not be many willing to try.
I hope you find the right doctor.
And speaking of your nerves, are getting help for that too?
Jan
It seems that you have had a multitude of serious complications. Sometimes, minor misjudgements turn into huge complications. Once you are weakened, you are sort of "set up" for a cascade of unfortunate events.
Having a Crohn's diagnosis would help make more sense of this, but it sounds like they have not seen evidence of it, at least not yet.
The problem with fistulas is thet sugical repair is not always successful. And, with you being in a more or less critical state, it puts you at further risk. So, now that it has been a long time, it is appropriate to think about going in and getting it fixed. I imagine that for you, the challenge will be finding a surgeon you trust, and with your history there may not be many willing to try.
I hope you find the right doctor.
And speaking of your nerves, are getting help for that too?
Jan
WOW! You have had a very unfortunate journey with so many complications. My prayers to you that your future will be less bumpy.