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I am looking for feedback from women about facing a decision to have a permanent ostomy... or comments/ feedback about things after having an ostomy.  What were your biggest hurdles, concerns, frustrations?  What changed?  what was frustrating or uncomfortable to do?  What was impossible to do?  How did you handle body image/ intimacy?   Even hugs and affection?  I am in my mid-30's, haven't had children due to severity of  Crohn's disease for more than a decade.... and  the docs now say that a permanent ostomy is the only alternative to muddling along with my current meds <which work at about 20%>  The ostomy may not even resolve 75% of my symptoms... and of course - Once the Colon is gone, you don't get it back.  My sibling has a Jpouch and is healthy... but none of the docs say that Jpouch is an option in my case.  Feeling low & scared of an ostomy.

 Reply posted for katya.

Oops!  My previous message got confobulated.

Anyway, Katya.  I had a temporary ostomy for eight weeks as part of ileoanal pullthrough (j pouch) surgery.  Because my ileostomy was temporary, I may have a different view of them than someone who lives with a permanent one.

Personally, I did not have any mental hang-ups with having an ileostomy.  The thought of having my intesting breach my body does not bother me - perhaps because I'm an anatomist and I think stuff like that is cool.  The ostomy did not bother my husband either - maybe because he too is a scientist.  Most of my friends thought it was pretty neat that one could see an intestine.  Crazy?  My experiene is, an ostomy just doesn't bother many people.

After I recovered sufficiently from my surgery, I purchased a lacy and supportive pouch cover from a company online that makes specialty garments for women and men with ostomies.  I had no problem with intimacy while I had my pouch.  The pouch cover wasn't a necessity for intimate times, but I liked having the physical support for the bag. 

When I asked people I knew if they could tell I was wearing a bag.  They said they barely notice the bag under my clothes and that the only reason they noticed was because they knew the bag was there.

Over time, as I began to trust the structure of the bag, I was able to hug people freely and didn't worry much about my dogs jumping on me.  I was also able to return to my active lifestyle of walking, jogging, and going to the gym.

Deciding to have the jpouch surgery, I knew that there was always the possibility of having a permanent ileostomy if something ever goes awry.  After living with the ostomy for eight weeks, I decided it wasn't a big deal, and I would easily be able to live with a permanent one should the need arise.

I hope this helps.

 Reply posted for Rocket8496.

Katya,

Is an ileoanal pullthrough (j pouch) not an option in your case? 

 Reply posted for Rocket8496.

surgery is not necessarily a permanent ostomy.  There are resection surgeries that remove a diseased or damaged part of the intestines, and there are J-Pouch < where they connect the ileum to the rectum and give you a short j-bend and you have only a temporary or never an ostomy.  My brother went from having a colon to having a J-pouch, never had an ostomy. But  the only option for me is ostomy.... so I am struggling.  YOU ARE IN A UNIQUE AND WONDERFUL PLACE !!! you can take this time to educate yourself, read books, talk to people, meet more medical providers ASK QUESTIONS and get more opinions.  Don't just let this HAPPEN TO YOU.  It is your NEW JOB to be an ACTIVE PARTICIPANT and take control of your health; whatever health you have, physical, emotional, all of it. Blessings!

 Reply posted for katya.

I am dealing with having one in the future.  I was recently hospitalized for my flare with UC.  I lost a lot of blood and needed a blood transfusion.  I was on Prednisone and weaned off and now on Lialda long term and a corticosteroid suppository twice a day.  My doctor and the doctors at the hospital were talking to me about removing my colon.  I don't know too much about the surgery as I didn't want to ask knowing that I'd have to live with a bag attached to my stomach....unless there are other surgeries that I dont' know about (which I'm sure there is).  I'm having a hard time with the disease and with the thought of getting a surgery.  Not sure what to do.

 Reply posted for katya.

i am getting an ostomy. it has been difficult to deal with and i am pretty much freaking out. have you seen the uncover ostomy campagin? if not it has been a great resource for me and i am sure you will find it helpful as well. here is the link to the facebook page: http://www.facebook.com/?ref=home#!/uncoverostomy

the official website is here: http://uncoverostomy.com/