17 year old with adhesions

From: Amy (adkramer@mediaone.net)
Sat Apr 21 16:35:53 2001


My daughter, who is 17, has suffered from Crohns Disease (inflammatory bowel disease) since she was 9. In March 2000 she underwent a sub-total colectomy. 4 weeks later she was admitted to the hospital again with horrible abdominal pain, fever and vomiting, indications of an obstructed bowel. She was scheduled for emergency surgery that night at 7 pm. Well... at 5 am the surgeon finally came to see me. What he found when he opened her up was that her small intestine was one large adhesion.. he said it looked as though someoen took a glue gun to it. Her recoveryy was slow but she got through it.

Here we are a year later, and pain began again the day before Easter Sunday. I took her to the ER that night and they diagnosed an ovarian cyst, and sent her home with pain meds. When the pain was worse by Tuesday, I took her into the gynecologist and they admitted her for pain management. A week later, the cyst has not subsided.. she is still in constant pain (lowest the pain meds drop it is 9/10). They've tried Demarol, Dilotid, Toradol, Neurontin, and Morphine. Latest choice is Methadone. They do NOT want to do surgery to remove the cyst because of her adhesion history.. the surgeon who operated before feels that the problem is that the bowel is likely in the same shape as before, and the cyst basically had nowhere to grow. Perhaps the cyst/ovary is even caught up in the adhesions now? She is a high surgical risk, he said minimum 4-5 hour procedure. They want to give the cyst every opportunity to decrease on its own, and will include hormonal therapy to prevent future cysts. If obstructive symptoms appear again, they will of course do surgery immediately. But, bottom line is, they are sending her home tomorrow in pain. They consulted a pain specialist who wasn't much help.. but we are seeing another one next week recommended by the gynecologist who has had luck with sometype of nerve blockers. (maybe the pain mapping I"ve read about?)

She is so angry at all of us. She thinks we should just open her open, take out the cyst/ovary, and be done with it. I wish it were that simple. Any advice would be greatly appreciated. I feel so helpless :(


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