A little bit of history. I have a 26 year old daughter with Crohn's since she was 12. Everytime she flared she would lose weight. I was quite overweight and couldn't imagine I had Crohn's. Even my doctor told me back when I was 32 that I had IBS. For years I had "d" about
3-6 times a day. Usually after I ate lunch. Now that I look back I realized about
5-6 years ago it changed. More urgency and some mild gut pain. I lived with it so long that it becomes part of your life. Fatigue was probably my hardest to live with symptom. I just thought I was getting older and slower and just a fat lazy slug.
Last year I started passing air when I urinated. I remember having read something before about
fistulas to the bladder because of my daughter. I had a bladder infection being treated but decided I needed to go to the ER and let them decide if I needed to see an urologist or a GI. My PCP said an urologist but I was leaning to a GI especially because of my history of D. Went into the ER on Thursday, a ct scan was performed when the fistula was found. Had to prep for a colonoscopy for Friday morning. Couldn't get past my sigmoid from stricture. Doctor recommended, well really told me I needed a resection not only because of the stricture but they were going to have to repair my bladder. Now remember, we still didn't know at the time I had Crohn's. The surgeon was pretty sure, 90% exactly, that it was diverticulitis. He said I was going to have to have a resection and repair my bladder anyway so we might as well find out what I had at the time of surgery. Had the surgery on Monday. Home on Saturday. Because I also had to have my bladder repaired I was sent home with a foley bag. That was pretty gross. I was pretty out of it too. I did have a wonderful support system though. Even a hubby that cleaned me up. I know. TMI
I was back at work in five weeks. Even though it took me awhile to get my energy back to pre-surgery levels, my level just kept going up and up. Until I had a reaction to 6-MP and landed back in the hospital in November with bone-marrow suppression. Another 11 day visit in isolation. By the middle of January I had joined the Y and felt 20 years younger. I can't believe I missed so much time because I just couldn't have this disease. I'm too fat to have this disease. I've lost 60lbs and only have 40 more to go. But I really think I'm starting to flare again. I've got terrible tailbone pain and have lost my energy level. It was a wonderful 9 months though. Waiting for a call from my GI.
Full belly incision was above my belly button all the way down to pubic area. Scar barely noticeable. The only thing I regret is how much colon they took out. Sigmoid, descending and part of my transverse. What I worry about
is if/when it comes back it will probably come back in my rectum since that is the area that as been left behind. I don't regret at all having the surgery because I had a feeling of complete renewal. I felt wonderful for the first time in years and I didn't even know I was sick. Silly me. I didn't even have to be put on a bag.
Maybe they can just remove the stricture like they did with me and you won't have to worry about
a bag. Good luck and let me know what you decide to do. You are in my thoughts and prayers.
By the way, my husband told me not to scare you. He thinks I get too worked up by reading other peoples troubles. I told him that it really relieves my mind when I talk to people who are going through similiar experiences. I hope I have helped you.
Vicky / 47 years old
DX'd with Crohn's during a resection August 2006
DX'd with Steriod induced Diabetes November 2006
Considered in Clinical remission but have minor signs of disease activity
Daughter (26) also has Crohn's since she was 12.
Currently on 4000mg of Pentasa only for Crohn's
No longer able to take 6-MP because of Bone-Marrow Suppression
Cymbalta, Metformin, Lipitor