At a crossroads....

Crohn's Disease Forum

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Joined
Jun 27, 2011
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Hey y'all,
My name is Jamie Lynn and I was diagnosed with Crohn's disease ten years ago when I was 16 years old. I'm orginally from Washington State and have recently moved down to Southern California. I have been through every medication possible, Pentasa, Prednisone, Remicade, 6-MP, Asacol, etc. The remicade was working but ended up becoming allergic to it and having convulsions,throat closure, and vomiting as reactions. 6-mp also worked for a little while until I found out it was hurting my liver. I have been having flair ups off and on and I feel it's getting worse. I went to see a surgeon and he said that it is usually best to do surgery (removing a piece of my intestine at the end of my small intestine and the beginning of my large intestine) when your are still relatively healthy to lower the risk of complications. I have been active all my life, I played volleyball in college, ran track and still continue to play sports now. I am scared to go through with the surgery, but really want to get rid of the pain and symptoms of Crohn's. I would love any advice about having the surgery, how big the scar will be, the pain of the surgery and recovery period, anything would help me out. I am stressed to the max right now, and am also thousands of miles away from my family, as they still all reside in Washington State. I wish everyone with this disease luck in their battle and if I can help in any way with anyone's situation just hit me up!
Thanks! :)
 
Hello Jamie Lynn and welcome to the forum!!
It seems that after a period of time the meds
have done all they can and then we have to consider surgery.
Many members here have had surgery and would be only to happy
to answer any questions you may have.

Welcoming Hugs~Nancy
 
Hi Jamie Lynn and welcome! I am sorry to hear you are facing surgery, but if you aren't responding to medication, it does sound like it is time. I have not had surgery, so I can't offer any advice. However, check out the Surgery sub-forum:

http://www.crohnsforum.com/forumdisplay.php?f=71

I bet you'll find a lot of helpful information in there. Also, if you post your questions there, I am sure you'll get a good response.

Crossing my fingers that everything goes well with your surgery and you feel great soon after!
 
Hi Jamie Lynn. I am sure everyone's story is so different and surgery is such a hard thing to give advise on. I would have to say not to rush into it and make sure to discuss and weigh all your options with your GI doc and family. For me it wasn't an option, I didn't know I had Crohn's till the day of my surgery. I had been terribly sick and miserable with no diagnosis for years. Ended up in the ER late one night and was doped up on morphine and talking to a surgeon the next morning. Thanks to the morphine I don't have much memory of the discussion pre or post op. I do remember being concerned if I still had a belly button LOL and I do. But as far as the scar mines about 10-12 inches long, not sure its that's the norm or just because mine was exploratory surgery. For me the pain and recovery of the surgery was a piece of cake compared to the pain of crohn's. I was off work for about 6 weeks after the surgery. And now 4 years later I have had very few bouts with stomach pain, I can eat basically everything (there are still a few no no foods that change regularly) and I still spend quite a bit of time in the restroom. But all in all I am thankful for my surgery.

Good luck in whatever you choose!
 

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