Colectomy/Ostomy Surgery
Sun, June 10, 2012 8:37 PM
I am 34 years old and have had CD for 14-15 years. I have been on Remicade since late 1999. It was my miracle drug and has/had kept me away from surgery and off pred. with only colitis aspects to deal with. But now I have been having some reactions to my infusions, drug induced lupus type reaction, meaning my body is developing a resistance to remicade, and would prevent me from getting any more infusions, as well as humira type meds. I have along with my husband and family discussed the possibility of having my colon removed. My CD is in my ileium and non active. my issue is in the rectal/colon aspect or colitis problems from years of disease and abuse CD has inflicted on them. I have 2 kids ages 5 and 2; I have missed so many days and so much life the last 14 years, and prior to being married and having my kids that was ok. but it is not anymore. I have fissure with multiple skin tabs that doesn't respond to any meds, as well as a fistula that used to respond to remicade but does not anymore. I have become a hermit, from not being able to even go to the grocery store b/c how do you run to the restroom with a cart and 2 kids under 5! i can't work, b/c its too much on my body and mentally exhausting trying to find the right line of work that allows for so many bathroom breaks. The pain, the pain is too much, i can't be in bed with suppositories, pain meds and a heating pad while having to take care of my kids. I feel as though he and my kids are being robbed of me. of a fun loving, mom/wife who lets this nasty issue take control of my life.
bw0233Joined Jun 10, 2012
Mon, June 11, 2012 7:27 PM
Reply posted for BW0233.
hey, I had a total colectomy in 3/29/12..it was a emergency surgery my colon became toxic and I almost died. I have ostomy right now. I was doing everything you explained. I still have to do canasa because my rectum is still in but that will be removed next month. I am feeling much better since I got rid of mu sick bloody colon. I am actually able to go for walks . I was at the movies recently. I mean I can eat now not much but hey !! I can eat. I can get down at times cause of this bag it does take time to get use to it. But the pain is much less and If I had to do it again I would def do it and I wouldn't have waited so long. Its up to you hon but if you want to be able to run around with your children and laugh and not be miserable I would advise you to have you to have the surgery...I would imagine you can hardly be intimate with your husband either...well I can tell you its going to change after surgery. I am still unable to work cause I still have my sick rectum but I cant wait to get it out and start living again. It will take time to recover but remember you can't continue like this you have your family to think about especially your little ones...you are young and deserve to be healthy and happy....Best of luck . It time you start living ....I am 30 and female... so I can relate to why you may be hesitant.
Joined Jan 31, 2012
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