Re: any had an ileostomy reversed due to scd??

February 8, 2009

I have an ileostomy and am currently on SCD. Mine was permanent, with

no option of reversal due to extensive damage as well as the fact that

I have Crohn's, which most doctors will not reverse ostomy surgery for

because the disease can easily come back in the small intestine

(unlike UC which is solely in the lg intestine and won't return in the

small.) My cousin and my mom both had the reversal surgery (IBD runs

rampant in my family,) and my cousin had to have permanent ileostomy

surgery about 6 yrs later due to fistula and pouchitis, and my mom

suffers continually with pouchitis.

My ostomy is great! Most people I have heard from (through online

support groups) find that living with an ostomy is MUCH better than

living with a reversal due to the very high percentage of patients who

eventually come down with pouchitis (anyone with IBD is susceptible to

pouchitis, UC and CD alike -- my mom had UC.) There are other

concerns as well with a second surgery, and I highly suggest your

friend go online to chat with others who have had the reversal to find

out which they would prefer in hindsight. I know the thought of

living with an ostomy for the rest of one's life is depressing, but I

have a much fuller life due to my surgery -- hiking, camping,

swimming, skiing, giving birth to my son, , and now pregnant with

#2, and in general just living life without needing to know where the

next bathroom is! I can't say the same for the people I know who have

had the reversal surgery.

There are Yahoo Groups dedicated to ostomies as well as for the

J-pouch reversal surgery. I hope your friend finds this information

helpful...I'd be happy to exchange emails with him as well if he'd

like to know more about my experience.

That said, SCD is always a good idea when dealing with IBD (as you

know,) so I try to stay on it to keep my Crohn's in check (I still

have flares now and again, but SOO much more mild and manageable with

my ostomy than before surgery.)

In Health,

CD 25+ yrs, ileostomy 4+ yrs

SCD on and off for 4 yrs

Son, 27 months, SCD since 2/08 due to mulitple food intolerances.

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