Finally found Fistula Connected to Abscess - Questions

[Jerseygirl]

I need to just throw this out there. I'm the mom not the patient. My 24 year old son was diagnosed at age 6 with UC. I realize this is a Crohn's forum, but I'm getting to that. At age 14 a new doc changed his diagnosis to Crohns. For a long time he refused to take his medicin, Pentasa, 6mp, and I for get what else. Changed doctors again, giving up peds for adult. Had a colonoscopy, there was inflammation and his colon didn't look that great. But this guy was not sure about the Crohns. Fast forward to age 23, last January. Underwent a bunch of tests because it had been a few years and the hairs on the back of my neck were standing up. The capsule study was fine. The endoscopy was fine. The colonoscopy, not so fine. They clipped out a few polyps and they came back precancerous. We went to Fox Chase in Philadelphia, for a second opinion. Second opinion was the same as the first. Colon and rectum out. Illiostomy and j-pouch in. Went to a great surgeon at RWJMedical School. Surgery went well, no infections. Illiostomy was the problem but we got that worked out. SEPT. We had the drop down surgery. Now the real fun begins. Somewhere along the way, my son began having really serious pain in his abdomen. Everyone thought it was post surgical pain. Finally went to see Gastro. He ordered another capsual study and an MRI of the abdom. Capsual went fine MRI, not so fine. They found a orange size abscess. Didn't see a fistulia. I find this out Christmas Eve! Brought him to the hospital the day after Christmas. In the meantime, Gastro put him on an antibiotic and Flagal. Next Interventional Radiology gets involved to see what this abscess was all about. Well, things sudden.y got a whole lot worse. Infection Disease now gets involved. The abscess showed a massive rare fungal infection. Still no fistulia can be seem. They put a drain in his back, the abscess was near his pelvic bone. They thought it was in the bone. Thank God, that didn't happen. Drain goes in and the following week we see the surgeon. Surgeon orders a CAT scan with contrast. Guess what shows up. A fistulia. Small, but there. Connected to the pouch and the abscess. Bad, bad, bad. Back in the hospital right from Radiology. Now he has the drain in his back, and they put him on TPN. This is the beginning of Jan. So now, we are at the end of Feb. Tomorrow he is having a pouchoscopy. I'm not sure what to expect, but I know the fistulia is there because his drain is still collecting about 15MLs a day. I'm a complete wreck today. Nobody wants more surgery, or another illiostomy. I'm asking the doctors to have a consult with Dr. Remzi. I don't want to go to Cleveland. And we can't go because of the pick line anyway. Ones anyone know a way this can be solved. Can the fistulia be scooped out. The abscess collapsed 2 weeks ago, yea! Any suggestions, help, opinions are welcome. Sorry this is so long, but I'm desperate at this point and very scared. Thanks.

 

[Jennifer]

Sorry you haven't gotten any replies Jerseygirl. How did the scope go? Any news?

 

[Jerseygirl]

Jennifer, so much has past since I put this post out there! My son had surgery March 12 and had the ostomy put back on. The surgeon did have a consult with Dr. Remzi and actually did the surgery to Remzi's specifications. The fistulia. That darn thing is more than just a pain in the a**. We had a fistulia gram done a week before the surgery and it actually got bigger. So the discussion was made right then and there that the TPN was not working and we needed complete bowel rest. Then my surgeon said we need to go to Cleveland. My understanding is that Remzi redoes a pouch not repair. Long and short, my son doesn't have enough small bowel to do a redo. So I made an apt to see Dr. Dietz. He does repairs. We are going out there in June and he is doing his own exploratory surgery to see what's going on. If all is looking, we have the takedown in SEPT/October. So it's never ending! My nerves are shot, my son has lost 110 pounds, good thing he needed to do so, but he has had enough. Wishes the bag, the doctors, everyone would just go away. Me too. But thank you for checking in, I really appreciate it.

Dianne

 

[Jennifer]

Oh my gosh you guys are going through a lot! I really hope that doctor will be able to help him. Please keep us posted. :hug:

 

[AFS]

I am very sorry to hear your story. Poor soul, your son. Must be so hard for him. I am humbled to learn how you have been supportive of your son. God bless you and your son. I will prey. Is the abscess/fistula painful for him? Not too sure how the fistula repair is going to be done if the track is connecting the abscess to the pouch. What is the clock position of the external opening with respect to anus? My last I&D was to place a mushroom catheter to drain the abscess. The catheter pushing against the fistula track (my CRS put a wider tube than my fistula track) was very painful.