J-pouch complications

Has anyone had j-pouch issues? My son had his colon removed in June. The usual issues with that but we survived. He is 23 years old. Got through the Summer and in Sept. Had the drop down surgery. It has been nothing but trouble. We thought the pain he has been experiencing was post surgical, but ...
Finally went to see the gastro. He repeated some testing, like an MRI of the abdominal area. And a capsual study. The capsual study looked ok, no Crohns that anyone can tell. The MRI is a different story. It showed a golfball size abscess and a fistulia. Also showed a peliv bone infection. Well, they don't know what bacteria is in the abscess, nothing is growing in the Petrie dish. They are draining it. Lots of yickie stuff. Don't know what to do about the fistulia, not the normal kind, no sinus. Can't tell what is feeding off of what or if the abscess is on the bone or on the pouch. Just wondering if anyone else has had something like this. Thanks.

Hi. How are you. My name is Kathy and I had an ileal pouch when I was 30 years old back in 1994. I had been in nursing school for 3 years when I got really sick with ulcerative colitis and went into the hospital for the 2 part surgery. The fistulas and other problems with infection shouldn't be too much of a problem. I would certainly make sure that they know that he is keeping his J Pouch.
I had terrible pain after the second surgery because I felt like I had to go to the bathroom all the time. It was awful. I actually Was going to the bathroom a lot, but the "Every Minute" feeling of pressure and helplessness was truly Awful and Terrible.
I remember my mother taking me to the Pain Clinic over at UNC Chapel Hill where I had had my surgery. She held me in her arms and kissed me. She knew that I was on my LAST LEG. The Pain Clinic Saved My Life. In fact I send them a Christmas Card every Year. I am not kidding. I was put on Elavil and Methadone. I slept for 2 days and felt RELIEF! It takes a week or two for the medication to work without you feeling funny. Don't let Methadone scare you. It is used for many illnesses. It is not Fair for your Young Son to be in Pain like this. It isn't fair to him when there are options that are available if you use them. Some surgeons and doctors are more apt to refer you to a pain clinic than others. I will tell you right now that pain makes your blood pressure go up. It is bad on your organs. Pain is Not Good for the body. If you would like to talk with me then I can chat online and don't mind talking with you over the phone. God Bless. Kathy

Kathy and Marianne, thank you for your input. My son did have a drain put in. It seems that the abscess is in the back of his pelvis, near his tailbone where he has been having significant pain. He is feeling a bit better since the drain was inserted. So I'm thinking this has been his problem all along. I'm ready to take him to Cleveland clinic if no my surgeon doesn't know what to do. We are in NJ and my surgeon does more j-pouches than anyone in the state but has never had a serious complication like this, so we shall see. Thanks again for your help.
Dianne

Sorry to hear your son is in so much pain. I am through Step 2 of my J-Pouch surgery getting ready for takedown in February all of which was done at Cleveland Clinic. I am in southern Ohio and it is 3 1/2 hours to Cleveland but I truly believe I would be dead today if not for Cleveland Clinic. By all means get your son to Cleveland if you feel he needs more help than you are getting near home. They specialize in j-pouch complications.

I have learned so much on the Ostomies forum so you might find some information there. Take Care!

Marianne, Jeff's surgeon was Craig Rezsec at Robert Wood Johnson in New Brunswick. We did see Dr. Ciriello at Fox Chase because initially they thought he might have colon cancer. He was 23. It's been such a long haul. I had not heard that Cleveland was the premier place to go at that time. Otherwise, I would have gone there in the first

allergicjerseygirl said...
Marianne, were you in the hospital the whole 8 weeks?

No, I was able to go home with the drain. I felt fine while I had the drain in. It was just really uncomfortable because the tube was thru my upper left butt cheek so it was hard to sit! Then the bag the gunk was draining into I had to strap to my leg. Fun times. Not sure how they placed your son's drain but that location for me was the only way to reach my abscess. I know it's hard for him (and you as a mom) right now but this will get resolved. Stay positive!

I have heard good things about RWJ and j pouch procedures there. I considered going there but my GI at the time really was pushing for me to go to the surgeon I had in Philly so that's where I ended up. I too did not know about the Cleaveland clinic until afterwards.

How is his pouch functioning? I know that he has the infection outside of the pouch but is his pouch functioning ok? If his pouch is functions ok then you need someone to treat the infection and find out why he is getting it; doctors in NYC might be up to the task.

The other thing if you are transferring hospitals you might want to take into consideration that all the very experienced doctors/surgeons are probably not working the next few days due to the holidays. Your son might get assigned a doctor who is most-likely right out of medical school.