Diagnosed at 16

[LaHarmon]

When I was 16 years old I was diagnosed with a severe case of Crohn's, at the time I thought it was unfair but then so does every teenager. They started me on Remicade within two months of being diagnosed and it appeared to be a miracle drug. It worked for two years and then my body started to build up antibodies to it, we increased the dose and finally switched to Humira. During this time my mother passed away from breast cancer. After being on Humira for about 6 moths my doctor decided it was not helping as much as Remicade did, even with the antibodies I had built up. So we switched back to Remicade. After seeing very little to no improvement we decided to try Cimzia and switch to another GI doctor who's speciality is Crohn's particulary severe and strange cases. I have been seeing my new doctor for about a year now and we saw some major changes, for the better I thought. I had gained back my weight, I was almost normal for my blood labs and I was not nearly as systematic. Today I had my 6th colonoscopy (at the age of 22) and discovered severe narrowing to the sigmond colon, resulting in being referred to a surgeon. I'm terrified, I had hoped all we had done in the past 6 years was going to keep me away from surgery. My doctor believes we can do a laproscopic surgery and reattach to healthy tissue, which I'm praying for. What type of results have other people had with surgery for Crohn's? Right now I'm just such a mess of emotions, and I know there are others that have gone through similar situations; that gives me some comfort. Until now I always thought I was strong enough to handle this on my own... Now I'm not sure. Any advice or even just your stories would help. Thank you.

 

[TooYoungForThis]

Hi, I just read your story and I’m so sorry for what happened to your mother during your situation I too lost family during this ordeal; my grandfather and my uncle recently. I’m also on the verge of having surgery and I’m terrified my life with Crohn’s has been a real rough road, I was diagnosed in Gr. 9 and I’m now only in Gr. 11 and I can’t seem to shake my symptoms of Crohn’s I desperately pray that I won’t have to have surgery because I have no idea how I’ll get through it. All I can say is stay strong and I’ll help you out in any way I can if you’d like you can read my story with Crohn’s it is quite long but I’ve been through a lot and I hope it show how lucky you’ve actually been.
Good luck <3

 

[Misty-Eyed]

Hi LaHarmon and welcome!

I know exactly how you feel. I have strictures in my sigmoid colon too and they want me to have an operation even though I'm feeling better then ever. I've had them a long time though.. at least 7 years. They wanted to try me on other drugs (methotrexate) first to see if they'd help and they did for a few years.

It is scary but I'm slowly coming to terms with it and I'm confident you will too. It's just hard to hear that they want to do something that you've been dreading for so long. Keep smiling

 

[LaHarmon]

Thanks to both of you. My doctor also has put me on methotrexate and to me it seems to have helped a lot. Over night I did some research and that helped me to come slightly to terms with this idea. I'll go to the consultation with the surgeon see what he has to say. I've been told he's the best colo-rectal surgeon in my area. The idea of surgery is still terrifying (I personally would like to keep all my original parts), but I'm coming to terms. Thank you both for your kind words.