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Advice following emergency surgery for bowel perforation

Sat, August 26, 2017 9:58 AM

Hi all. In early June, after six months of being very ill/ I guess in a flare, my mother's bowel perforated while in the hospital. She had been there for 9 days due to poor blood levels, pain, inability to walk, etc. She had been on Entyvio but had an allergic reaction to the last dose she'd received. Her diagnosis was ulcerative colitis, but they were never able to get far enough up into her colon to really see what was going on because she was so sick she could never do the prep correctly.

Anyway, she had to have emergency surgery while on a blood thinner that couldn't be reversed for a clot and they were pretty sure she was going to die - but she made it. The surgeon said it was only a foot long section of her colon that was severely infected/diseased and the rest looked healthy as far as he could see from the outside. An infected diverticulosis had ruptured because her bowel was so weakened - or something like that. It has all been extremely confusing and frustrating and I'm angry but don't even know who to be angry AT anymore. It just seems to me that with all the monitoring and tests and appointments and 9 days in a hospital someone should have caught something BEFORE her bowel burst.

But anyway, now she is about to leave rehab and go home - she's walking again, has a colostomy bag (because it was the fastest/ safest surgery to do since she was so high risk), can eat normally again and feels great. My question for anyone with knowledge/ experience of similar circumstance is - how the hell do we keep it from coming back and how do we know if she even still has or ever had UC? Could it just have been some other kind of infective colitis and now that it's removed it's gone? Nobody can say it seems. They want to give her another colonoscopy soon - I trust no one anymore. I'm afraid that's just going to irritate her bowel all over again and start the chain of events from scratch. Advice/ input appreciated. Thanks.

mizzemm
Joined Apr 8, 2017

Wed, October 04, 2017 4:33 PM

Reply posted for mizzemm.

can they undo a colostomy after that surgery? I had a proctocollectomy and they put in a j pouch, and I had a bag for three months while the j pouch healed. I guess I'm not familiar with that because my surgery was different. It's a rough road no matter what, but the happiest day of my life was when I woke up in the hospital and the colostomy was gone.

charbs
Joined Oct 31, 2016

Sat, September 09, 2017 8:04 AM

Reply posted for healerchic.

Thanks healerchic. They can do the reconnection if she wants, they just couldn't do it then bc it would have taken too long - she was high risk and would have died on the table.

mizzemm
Joined Apr 8, 2017

Fri, September 08, 2017 6:11 PM

Reply posted for mizzemm.

Hi,
I am 54 and had a colectomy due to strictures and a very thin colon wall. They were able to see the thin wall with an MRI scan. If the rest of her bowel was healthy, why can't they reconnect her? They always want to due a colonoscopy to see how the bowel has healed but since she tolerates prep poorly, a less invasive procedure would be labs and a scan.
I'm with you-I've have had to fire a few doctors for various reasons-the third leading cause of death in America is medical mistakes. I now have good doctors that listen to me and do not choose aggressive treatments. I hate the hospital and having my blood drawn. I am currently on Humara but am going to a naturopath because I am sick of Western medicine. And I am a nurse practitioner. Good luck

healerchic
Joined Sep 13, 2017

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