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If You're Considering or Have Had Ostomy Surgery Check Out This Forum - www.C3Life


Tue, July 01, 2008 7:00 PM

Hi All...Ive suffered from severe Crohns for 25+ years. Ive been through numerous drug treatments, from Sulfasalazine to Remicade & several procedures & surgeries (top 3 include resection, sub-total colectomy & ileostomy). I was diagnosed with a rare eye cancer (Conjunctival Malignant Melanoma) in 05, thereby forcing me to cease using 6-MP & Remicade, resulting in the ileostomy. The docs cant be sure that the cancer wasnt caused/advanced by the usage of the 6-MP/Remicade. If you are considering ostomy surgery then I highly recommend that you first check out the forum www.C3Life. This is a well regarded website for people w/ ostomies & is an invaluable tool in learning about the pros & cons of living w/ an ostomy. Most importantly, the members are both welcoming & HONEST. Ive mentioned this site to a few people but decided that everyone considering surgery should know about this forum. I urge you to check it out...fuzzy

FPO fuzzy
Joined Jun 22, 2008

Wed, June 25, 2008 8:47 PM

 Reply posted for daniel3320.

hi daniel...in answer to your questions...i'm a 48yr. old female & until recently, was doing pretty well w/ crohn's. unfortunately, i developed a painful *** under my stoma. tests revealed that i had an encapsulated sac of fluid, of unknown origin (not an abcess). had this drained 2 weeks ago, to no avail & had to go back & have a catheter placed in my abdomen...got to spend 2 days in the hospital (not fun procedures...i despise lidocaine injections!). since i also have free-floating fluid in the pelvic area, i had an ultrasound done today (also not fun as they had trouble getting the ' *** ' like wand in (this may interfere w/ my goal of having intimate relations before i hit 50...it's been a long time!!!). so, i'm now just awaiting the test results...the doc's (gastro, surgeon, radiologist) believe that the probem is crohn's & not a gyno issue (i'm just thankful that they're not talking cancer!). i do have a rectal-vaginal fistula (over 2 yrs) & maybe this is part of the probem. i assume that i'll eventually need to have my rectum & colon (10% left) removed. lastly, i'm in remission for the eye cancer but deal w/ corneal issues...need to be constantly monitered for recurrance as it has a tendency to return w/ a vengence & just a few yrs. ago was considered fatal. i'm very lucky, especially having access to a renowned doc at mass. eye & ear...saved my life. well, that's a snapshot; obviously, i have yrs. of experience to share. what about you? honestly, you must join us on c3life!...fuzzy

FPO fuzzy
Joined Jun 22, 2008

Wed, June 25, 2008 12:00 AM

 Reply posted for daniel3320.

Hi daniel...just wrote a long reply & lost my connection upon posting!!! It's 1:30am here, in MA, so I will attempt another reply tomorrow ...fuzzy

FPO fuzzy
Joined Jun 22, 2008

Tue, June 24, 2008 8:40 PM

 Reply posted for fuzzy.

hey fuzzy. just wondering your age ? your story sounds alot like my own, 25 yrs w/crohn's. same drugs, 3 surgery's- resections- total colectomy-Illiostomy. lost count on fistula's severe perianal fistula disease. have had some eye irritation ,styes. ect... What's your prognosis, treatment,outlook ?

FPO daniel3320
Joined Jun 24, 2008

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