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Crohn's Surgery

Thu, April 12, 2012 10:51 PM

hey. my name is kelly, i'm 26 and have lived with crohn's disease for six years. i have been on every medication imaginable that is used to treat crohn's disease. the past two years have been *** as i have lost a great deal of weight, i have dealt with unbearable abdominal pain, bleeding, inflammation, ulcers and extreme fatigue. this past september, i had an ileostomy, which was supposed to be only temporary. fast forward to now and my disease has progressed immensely since i have had surgery. from a medical standpoint there is nothing that can be done to treat my crohn's disease right now, besides undergoing a colostomy. i'm in the hospital right now awaiting surgery. i have an amazing team of doctors and i trust them a great deal. i really do trust my physicians when they tell me that surgery is needed in order for me to have a chance of living a 'normal' life.

right now, i really need support. i have done a great deal of research on the type of surgery i will be having, but i want more than anything for people who have gone through this, to reach out and give me advice on what to not only expect post surgery but what life may be like after surgery. i am younger (at least i'm a little young to have to be making decisions on whether i want my colon removed) and i'm also single, so for selfish, vanity reasons, i do have those doubts and insecurities in the back of my mind.

if anyone lives with a colostomy bag, how has it effected you both physically, emotionally and socially...especially people who were single at the time of surgery.

like i said, i have lived with an illeostomy for seven months, does anyone know how much different, (in what ways) it is recovering from that versus a full blown colostomy. your advice is much appreciated, as i know no one in real life who has been through this kind of surgerythank you in advance for any kind if info that you think will be valuable to me.

kellyforbes
Joined Apr 12, 2012

Mon, April 23, 2012 2:52 PM

I had an illiostomy about 40 years ago. I am now 60 years old and the Crones has returned. On my good days the best I can say is I'm not sick, on my bad days I feel lousy . Are there any veterans out there that have any advise?

kalamazoo
Joined Apr 23, 2012

Fri, April 20, 2012 1:38 PM

Reply posted for KellyForbes.

Kelly- I have an ileostomy due to Crohn's with a total proctocolectomy. The best recource is an ostomy support group. You can go to ostomy.org to find one in your area. (They also have online discussion groups) Also some chapters have "visitors" for a personal consult with someone who has been through this.

I had lost 30 lbs (too quickly) prior to my emergency (due to perforations) surgery and had been on several meds, many with nasty side effects. I was initially devastated, but have come to appreciate the new life this surgery has afforded me. My local support group (in the Chicago area) helped me so much, that I am now very active with the group and am myself a visitor. And because I can and enjoy eating almost anything, I have gained my weight back. The ostomy website also has info on diet, travel...numerous issues.

I hope this helps.

Judy

jls
Joined Apr 20, 2012

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