Community Forum

Surgery for Crohn'sMy husband was diagnosed with Crohns about 6 years ago at the age of 55.  Hes dealt with diarrea, fistulas and strictures.  Hes tried many medications, but nothing seems to help that much.  He now has a stricture near his rectum that is creating problems.  The doctor has tried to stretch it several times, to no avail.  His doctor is now recommending a total removal of his large intestine - he will have to wear a bag - no J pouch.  We went to the Clinic for a second opinion and they agree.  With his stricture being so close to his rectum, they would not want to do a partial removal and resection there.  They also said with Crohns, theyve found removing part of the colon doesnt work very well, that they have lots of complications.  Hes having a hard time making a decision, as he has good days and bad days.  But this is really restriciting his life - always has to be near a restroom.  Any thought or recommendations?

 Reply posted for ngrile.

i had the surgery when i was 27 i am now 50 and can not imagine my life any other way. i am also a nurse in the operating room, fortunately i knew a lot about the surgery. i was so sick for most of my 20's, i was diagnosed when i was 18. back in the late 70's early 80's they did not have some of the wonderful drugs they have now. i have a very normal life now, married with a grown son and a grandson, work full time and try to remain active. it is a big decision but worth it to have some normalcy in your life. there is a period of adjustment for not just you but your family. taking care of yourself post surgery and managing your appliance will become second nature before you know it, and i am certain you will not miss the pain, diarrhea and other associated symptoms that make your life a living *** every other day or so.

 Reply posted for wildcat.

I just had emergency surgery on May 5th and yesterday was my first day back to work. I was in the hospital for 15 days for a bowel resection and they also took part of my colon and appendix out. I had several other complications too: congestive heart failure, severe joint pain and several other things. I am also 21 years old and I feel like I'm stuck in a rut! I really don't have much recollection of the 2 weeks in the hospital and that bothers me. I just haven't felt like myself since the surgery. I saw my Gastro Dr. yesterday and now I'm back on 10mg prednisone for a few weeks and back on Humira (only 1 shot every 2 weeks, before my surgery it was one shot a week). I'm just not really seeing any progress after having the surgery except for some pains I was having. I don't remember what its like to be a normal person and I want to be normal!!

 Reply posted for ngrile.

for the gentleman who wrote about deciding to have surgery due to crohn's strictures , fistuleas etc.  i am in the same boat & not sure  the best thing to do.  i am just learning to use the computer at 66 yrs. old & not sure you will even get this.  if you do & would like to communicate, please write me at   lari1944@live.com    many thanks   * lari

Surgery for Crohn'sThanks so much for your thoughts.  I think he will go ahead and do it.  Its just such a big decision - but sooner or later he will have to.  And we feel comfortable with the Clinic.  We saw Dr L.

How is your son doing?

Surgery for Crohn'sMy 21yr son had the same problem. He had a loop ileostomy done at the clinic on 1/26- We saw 2 physicians at the Clinic-and choose the older, more experienced. He wanted to do an open procedure vs laproscopic. He was very up front and we liked that. We were told 5-7 days- he was home in 3. Because of his age we asked the doctor to leave his colon and rectum in the hope that by diverting the stool and continuing the remicade we might have a chance at dilating the stricture once the CD "settled down" (his rectrum was so bad they were afraid they would perforate it) His Dr agreed but said after a yr he would need yearly biopsies as his risk for colon ca goes up- and possibly at that time we would just remove everything. I also am a nurse at the clinic and would be more that happy to share our experiences- feel free to email me- sulzers@sbcglobal.net

sue