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Crohn's Disease Forum » Your Story » In recovery from intestinal gangrene


05-13-2014, 08:36 PM   #1
ElizabethInDallas
 
Join Date: May 2014
Location: Flower Mound, Texas

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In recovery from intestinal gangrene

Greetings all,

I come here at the advice of a hospital employee. I am the survivor of a surgeon who is no longer in practice after his malpractice insurance hit its maxi!um payout. I'm happy to be alive, as two of his patients (who were acquaintances of mine) didn't survive him.. But that's another story for another time.

I developed intestinal gangrene from a botched loop ileostomy (trying to heal a fistula), and ended up losing my caecum, appendix, terminal ileum and a portion of my colon. Since then I have endured 5+ years of "I don't know what to tell you" from doctors, as a result of bile malabsorption and chronic diarrhea, and most recently a HUGE gut. I mean, I look 12 months pregnant, or as if some strange alien from space is going to tear out the front of me. It's hard as a rock!

I'm here looking for answers, ideas, and some commiseration. I sure do feel for everyone here, as I also know the location of every bathroom in Denton County. I know pain and bloat...and the occasional humiliation. Kudos to you all, and thank God for you.
05-13-2014, 09:16 PM   #2
Essieluv
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Hi Elizabeth. Welcome to the forum! I am amazed at your story, you sound like one tough cookie. I have some experience with crappy surgeons botching operations, but nothing like what you have gone through. I can tell that you are a fighter. Sending you hugs
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Meds that failed me: Remicade, Humira, Cimzia, Entocort.

Waiting for a cure!
05-13-2014, 09:36 PM   #3
Trysha
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Join Date: Aug 2009

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Hello Elizabeth
What an ordeal you have been through such a tough time.
Hopefully someone will find a solution for you.
Feel better soon
Hugs and best wishes
Trysha
05-14-2014, 01:26 PM   #4
Ali29
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Join Date: Mar 2014
Location: Texas

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Elizabeth,

So sorry to hear what has happened to you. I'm hear in Coppell and have a wonderful GI if you have not found one yet. Great bedside manor, takes the time to hear everything and will think outside the box. If you would like his name/number - he sees patients in Coppell & does surgeries in Flower Mound as well as Plano. PM me if you would like his name.

Best wishes that you heal quickly and feel better!
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Diagnosises - Mast Cell Activation Disorder, IBD Small Intestine-duodenum-villi blunted, Bile Acid/Fat Malabsorption, Chronic nausea-vomiting/pain, esophageal dismotility, mucosal edema, acid hypersecretion, Lymphocytic Colitis, Ocular Migraines, gallbladder removed

Current Meds: H1 H2 Anti Histamines, PPI, Enteragam, Lomotil, Phenergan, Percoset

Meds that did not work: Pentasa, Lialda, Zenpep, Entocort EC, Carafate, Elavil, Lotronex, Desipramine, Questran/Welchol severe bloating/pain.
05-14-2014, 02:17 PM   #5
Jessi
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Join Date: Jul 2011
Location: Ogden, Utah

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Welcome Elizabeth.

What a terrible time you must have been through. I would love to hear the details of your story sometime. In the meantime, hang in there and know that you are not alone.
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~Jessica

Dx'd with Psoriasis in 1993
Dx'd with Psoriatic Arthritis in 2004
Dx'd with Ulcerative Colitis on May 18, 2011

"Life isn't about waiting for the storm to pass... It's about learning to dance in the rain." ~Anon.
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