Has anyone gone through this?By: Barb40 (11:38 AM 05/10/2012)
Hi. My daughter is Shelley long. I have posted on this site years previously but haven't for a while. My daughter was born with long segment hirschsprungs disease and at 12 days old was given a loop illeostomy giving her 35cm of small intestine that functioned and all remaining diseased bowel left inside. At age 4 ( after many an argument with docs) we finally got docs to remove the diseased bowel which we believed was making her sick. We did not want to try reconnection as we had achieved sucsseful weaning off tpn and didn't want to play with her working bowel. It was 8 hour surgery. We found out her bowel was riddled with enterocolitis and burst during surgery. We ended up in hospital for 2 months and needed tpn for support. The surgeon left Shelley with her original loop illeostomy that has a few centimeters of diseased bowel attached and a 10cm rectal stump which we were told was needed for pelvic support.
It has been a long year since then and Shelley kept getting sick. Always similar signs as before but milder. She was also suffering severe bum pain needing opiate drugs to help. After a night of such bad pain, being sent home from hospital ER, and Shelley stating she wished she wasn't alive!!!, we demanded that doctors check her rectal stump for enterocolitis. She had it so bad that 2 weeks ago she had surgery to remove it. Very complicated! The disease had penetrated the mucosal layer of the bowel meaning she needed the walls of the rectal stump removed also. It had adhered to her uterus but surgeon managed to remove without damaging uterus or bladder. To save damage to the vagina he had to leave a few centimeters of rectal stump there and we hope it's disease free. He has told us if Shelley ever needs any more pelvic surgery it will be impossible due to excessive adhesions! It has been 2 weeks since surgery and shelleyhas recovered well. It was performed laproscopically. After discharge from hospital 4 days ago, Shelley spiked a temp and had stomach pains. We took her straight to hospital where they ruled out peritonitis and said she had a viral illness! She has lost 2 kgs and I'm thinking she needs tpn again. Will take her to hospital again tomorrow and see gastro instead of surgical. She is still having bum pain and belly pains not eating much and really low on energy. Has anyone else had any experience with removal of rectal stump? Do short gut children just struggle after major surgery? Is all this to be expected? We feel like the doctors think we are hypochondriacs!