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Had 1st step (colectomy, pouch formation) in Nov. 2010 and ended up in the hospital with multiple complications for right at a month. Had a PICC line until almost the end of December.
Had a pouchoscopy in February 2011 hoping to get a date for takedown surgery but instead they found a leak in the pouch. Two exams under anesthesia were performed in which they attempted to fix the leak. Finaly the leak was apparently fixed and takedown surgery was scheduled.
Takedown was performed in May 2011 and it seemed to go real well pain wasn't too bad and I adapted quickly to the pouch.
After a couple of months passed my ostomy site started to swell up and hurt (they had left it open to heal from the insie out and it had finaly closed off) pain got pretty intense and finaly it opened again and released a large amount of fluid. Saw the doctors about it and the wound was not inflamed or infected so they just said to keep track of it and let them know if it didn't heal up or if it started showing signs of infection.
After a few months and some CT scans I ended up back in the hospital January 2012 it had turned out that the problem was a fistula from the pouch to the ostomy site.
A bunch of tests were performed and I was sent home with a PICC line and lived on TPN for 5 weeks. This did not help and the fistula actually got worse, now I was wearing an ostomy pouch where before I could always control it with gauze and tape.
Had surgery April 16th 2012 in which they disconnected and repaired the pouch, cleaned up where the fistula was and gave me a temporary end ileostomy. Ended up with another leak in the pouch this time where the pouch is attached to the rectal cuff.
Went in for a CT scan a week ago and it looks like the part of the intestine leading up from the pouch (not connected at this time) has a leak which allowed the contrast fluid from the CT scan and pouchoscopies to leak and form an absess which in turn got infected so now I'm back in the hospital with three drains and IV antibiotics and no clue if/when I'm ever going to have my takedown surgery.
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Thanks for the replies, just had another CT scan this morning to see how well the drains are doing and they have been zeroing in on the best antibiotic to use. I'm hoping that the right antibiotic can be taken orally so I don't have to get another PICC line.
Looks like they are going to send me home with the drains in the next couple of days and then come back for another CT scan next week to see if they can remove any of them.
After that wait another 6 weeks for the infection to clear before they take a look at the pouch again to determine what needs to be done before the take down.
I started to get some pain and swelling around my ostomy site, then in the last couple of days started running a fever decided it was time to head back to the hospital again.
Before leaving took a shower and changed my ostomy bag,.while changing the bag I noticed some puss was oozing out around the stoma and more would come out if I pushed on the skin around the stoma.
Made the 200 mile trip to CC and went to the emergency room were they did a CT scan and admitted me so far they think that the swelling around the stoma is from inflammation and antibiotics will take care of it but the CT scan also showed a large pocket of liquid in my pelvis most likely from the leak in my pouch and they will be putting a drain in for that.
rsz: I am sorry to hear you are going thru all of this. I had my takedown April 18th and came home from the hospital with two drains, had a small fistula thankfully they all cleared up. However I can empathize with what you are going through. You are in my prayers and I hope you have a good recovery and takedown will be in your future soon.
Finally released from the hospital after 8 days, sent home with 2 drains and antibiotics supposed to go for more tests in a couple of weeks. Had an endoscopy through the ostomy and also a pouchoscopy and they found no signs of Crones. Also they did another pouchogram and pouch still has a leak which is the reason for the drain in the pelvis and also have a leak below the stoma site from the loose end of intestine coming from the pouch requiring a drain by the stoma.
Still trying to figure out what to do with these large drain pouches when I have to leave the house, the tubing and pouches seem to get caught on everything any suggestions?

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