I am fairly young (27), female, and just finally decided to have this surgery 4 weeks ago due to Crohn’s disease. I can totally relate to the position you and your daughter are in by having to make this decision....my surgeons were telling me back when I was only 17 that they wanted me to have this surgery (I was Really in a bad flare then).
What happened for me what that at age 17, I had tried almost all of the meds and they didn’t work. However, Remicade (which was fairly new then) had come out, and I told my surgeon that I wanted to try this last medication to see if it worked (they thought I should just have surgery) before I would consider an ileostomy.
Well, Remicade was a total miracle for me! I was literally BACK TO NORMAL without any Crohn’s symptoms! And it continued to work for me for nearly 10 years (those were great years that I would not trade for the world)!
…but then last year, the Remicade began to not work as well (I would be in remission for about 5 weeks, but flare for the next 3 weeks until I got my next dose of Remicade, then be in remission again, etc.). Also, my colon had so much scar tissue from past inflammation that I was not able to have a colonoscopy performed, not even with the pediatric scope. This meant I could not be screened for colon cancer. I began to think more seriously about surgery.
Last March, my mother (who also has Crohn’s) was diagnosed with colon cancer. She had it removed and is doing well, but for me, that was the straw that broke the camel’s back so to say. I realized that colon cancer could be forming in me (my chances were 20 times higher now that my mom had it), and the doctor’s could not even check to see. So, I tried to look at my options as logically as possible. Remicade was not working as well, but I still was not HORRIBLE, you know? Not as miserable as I thought I SHOULD be to choose such a drastic measure. It sounds like this is how you feel also.
I obviously would never presume to tell you what is best for your daughter, because I could never know. I chose to exhaust all medications before surgery, and am VERY happy that I did so. I was NEVER on prednisone in the 10 years that I took Remicade—the Remicade itself was good enough to keep me in remission. I would NEVER trade those great years I got from being on Remicade to having surgery.
Since your daughter is not sick all the time, I realize that that makes the decision that much harder. I had MANY reasons to choose surgery, but it was still very hard for me to pick having an ileostomy because I was still functioning pretty “normal” at the time…
What does your daughter think about everything? She is so young; I can’t imagine how hard it must be to see her feeling sick. L What meds has she tried? Good luck…keep us posted about how you both are doing.
Thanks for your replies.
Bratcat has tried (and is still on) asacol. She used rowasa enemas, hydrocortisone enemas, and prednisone for her first flare. It took several months but she did get into remission. She started to lower her rowasa and got to every 3rd night when she started flaring again. Upped the rowasa, added back hydrocortisone enemas. Didn't help. Went back on prednisone (highest each time was 60 mg). The GI started her on 6-mp. I know it generally takes weeks to months for 6-mp to kick in but she started on the way to remission almost immediately. We all figure it was the prednisone working. Finally felt like she was in remission and BAM! started flaring (6 months from when she started flaring with her 2nd flare so her 2nd remission really wasn't that long). Started the enemas again but this time no change using them. Started back on prednisone...again. From 40 to 60 mg. Added Remicade. Felt good after the first infusion. Started lowering her prednisone. Had her 2nd infusion. Felt good but not like it was a wonder drug. Had her 3rd infusion. Still didn't think it was the "remission" drug. And so, here we are, deciding on surgery. Her last 2 colonoscopies have shown dyspasia but the pathologists feels that it probably is due to the inflammation (haven't been able to get a colonoscopy when she is in remission).
We kind of feel that she is at the end of her meds. It looks like prednisone is what is really getting her into remission. And she missed 9 weeks of school with the first flare, 9 weeks with the 2nd flare, and 7 weeks with the 3rd flare. Logically that can't be the way to live. But surgery seems (and is) so drastic. Aaaccckkk!!