Hi Everyone,
I have had a J-pouch for over 7 years and have had nothing but problems. One week after my takedown I started having severe pain and pressure in the plevic floor area which my surgeron thought to be plevic spasms - he sent me for plevic floor theraphy for 3 mths with no help. Nexted It was supected to be Pouchitis but after exam it was not conclusive. Waited 3 more months still in pain then precribed cipro and flaygl I am still taking both 7 years later.
Year 4 I developed a R/V fistula that took Dr. months to figure out I was told this was most likely Crohn's but the Dr are still uncertian.
I was examined and place on Remicade which I have been on for almost 2 years - it also seemed to help. Then 6 months after having my Remicade does uped and moved to 7 weeks instead of 8, I started expericing more BM's than normal. I ask for my Remicade to be moved back, but the Dr. did nothing. I had 3 more treatments at the 7 week iterval - and had multiable problems - possible Lupus Like symptoms - Numbness in face arm and legs that moves, and still having the pain in the butt/ low back area. Then I developed a abecess in the pouch-perannil area. I had 3 I/D's then was taken to surgery to have a seton put in place. I finally got a second opinion from the Cleavland Clinic - They suspect a surgical leak that may have occured on my second stage in 2001.
I am trying to find more information on surgical leaks. How long people have had them? and what kind of pain they expericenced?
Where they able to get them sucessfully resloved or just had more problems? or did it turn out to be crohn's?

Any Help would help....
Thanks,
Carolyn

Hi Carolyn,
Have you stopped the Remicade? The Lupus like symptoms are a side effect of the Remicade.
Shannon

I had a leak that led to a presacral abscess, but it was discovered about a month post op and was surgically drained. The leak sealed itself up before the abscess was even drained.

I'd consider stopping the Remicade also if you are having lupus like symptoms.

Jan

Thanks for the notes,
I just stopped my remicade per the Cleveland Clinic. I go for my final test this Thursday which is an Exam Under Anesthesia. The doctor there seems to think there is a 90% chance there is a leak. So I am hopeful they can find my problem and fix it. and it not be crohn's. But,I will wait and see, since I haven't had the best luck. Thanks for the notes.

Carolyn

I read your post and saw that you go to Cleveland Clinic tomorrow. I go next Friday to get checked out for bleeding and spasms from my pouch. I'm seeing Dr. Church. Just wanted to let you know that I'm thinking of and have great empathy for you and your situation. I'll pray for an accurate and fixable diagnosis for you tomorrow.
This can be a very difficult (physically and emotionally) disease that we all deal with on different levels. I have found that simply knowing that others truly understand and care about your particular situation can be immensely comforting.
Have a safe trip and please post how your visit went.
Linda

Jan,

How did you know you had a presacral abcess? What were the symptoms?

Joe

Hi everyone,

I am back from the CC and still have no answers. I went for EUA yesterday. My husband got to talk with surgeon and ask a couple of questions but I have not spoken with the surgeon myself, I'm waiting for a phone call... My husband said that the doc was on the fence on weather it is crohn's or a leak - the same place I have been forever. He also said that he want to schedule to divert my pouch temporarily asap to fix the fistula and give my pouch time to heal then either re-connect or recreate my pouch if it was not usable. I am a little scared because if it is crohn's, I am afraid that my pouch will fail and if they have used so much of my small intestine for pouches that I will just have more problems. I don't know if I ready for a permanent Colostomy bag or not either. so I'm just waiting to talk to the doctor first then decide on the next steps... I think I will opt for the surgery but I am scared of making wrong choices at this point. Any advice???

I also wanted to wish Lina O the best with Dr. Church...Thanks for the good thoughts...and I be thinking of her as well...

Josep1 - I didn't know at the time it was called a presacral abscess the Doc's just called it a abscess. It felt like pain an pressure on my tail bone. When they tried to drain it I felt the pressure relieve. I have been feeling similar pain in my left low back buttock area since Dec. of last year and have gone through multiple test but nothing has shown up. This is what originally made me place the call to the Cleveland Clinic..
Thanks for the good thoughts.

I am just trying to keep my emotions in check and deal with what facts I have. Its really hard...

Thanks for listening,
Carolyn

Joseph, I knew I had a presacral abscess when I was told it was there as evidenced by CT. It was so full, the surgeon could feel it on rectal exam (about 500cc was drained). The symptoms were a constant ache about the tailbone and above and severe, hot pain when sitting for more than 10 minutes or so. I also developed a fever of 105 after a low grade fever for a month.

Jan