I am 33 years old and a married mother of two boys who are 14 and 11. I was officially diagnosed with Crohn's disease in 2000, (It was in my small and large intestine)but I have had it since 1996 after the birth of my first son.(was not properly diagnosed in 96) In 2000 I was put on prednisone for six months and I took Asacol until about 2004 and switched to Pentasa. I was in remission for about 6 years. Since then I have been on Endicort, Humira, Cimsia, and Flagyl. I've been on 6mp for about a year now. For the past two years I haven't been able to keep my Crohn's in control. It hasn't been in my small intestine since I was first diagnosed, but it has caused horrible damage to my large intestine. I will be having my first surgery in Feb. The majority of my colon is going to be removed, and my small intestine is going to be hooked up to my rectum. I had a colonoscopy a year ago and my rectum looked good. I have a pre-surgery colonoscopy on Monday to see if my rectum is still in good shape. If not they will have to do a temporary ileostomy. I'm really hoping this surgery goes well..........
Hi
- Thread starter Kris
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Hi Kris. I also have Crohn's, and am looking at surgery myself. I have tried Asacol, and many other pills. And Humira, Remicade, and Cimzia. My disease is in my small intestine, in the ileum. What are the effects of your surgery? I am really nervous at the thought of it, as I want to have children SOON! My Dr. wants to put me on Tysabri, which wouldn't allow me to get pregnant.
I'll be praying for you that your surgery goes well
I'll be praying for you that your surgery goes well
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Hi Kris:
I hope the colonoscopy yields some positive results and that your surgery goes well and provides you with relief!
I hope the colonoscopy yields some positive results and that your surgery goes well and provides you with relief!
Thank you everyone. Iya, the surgery (if it goes well) should provide relief from my symptoms. People who have this type of surgery have about 3-5 bm a day. For me, I don't really have a choice anymore. My large intestine is too bad and meds aren't working anymore. Prednisone doesn't even work that well. Hopefully the 6mp will keep what I have left healthy. I'm sorry it's interfereing with your plans to have children right now. Maybe the Tysabri will get you into remission long enough to go off of it and get pregnant. I've heard some people had less symptoms while pregnant. Not true in my case, but everyone is different.
I had my pre-surgery colonoscopy today. My rectum was mildly inflamed at the bottom and more inflamed towards the top. I don't know if my surgeon will attatch my small intestine to my rectum right now or put in a temporary ileostomy. Does anyone know how much inflamation is too much?
LOSTnut
Poopy
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Hello Kris,
wishing you all the best for the upcoming surgery. Couldn't tell you how much inflammation is too much but I had some left (seemingly) when they did the initial resection and the stitches inside came undone. The result was peritonitis (sp) emergency surgery and and an ieostomy bag for the next approx 4 months before they will attempt to do another resection. I wish for you that your's will go according to plan without hiccups.
:goodluck:
wishing you all the best for the upcoming surgery. Couldn't tell you how much inflammation is too much but I had some left (seemingly) when they did the initial resection and the stitches inside came undone. The result was peritonitis (sp) emergency surgery and and an ieostomy bag for the next approx 4 months before they will attempt to do another resection. I wish for you that your's will go according to plan without hiccups.
:goodluck:
Just an update. I had my surgery on the 15th. I got home from the hospital on Feb. 20. They removed all of my large intestine and about 2 inches of my small. I was given a temporary ileostomy. Hopefully only for 6 months. After my surgery I was doing great until they started me on oral pain relievers. The first two made me sick and my blood pressure was too low. Finally found a pain reliever that worked and didn't make me want to puke. The ileostomy has been difficult to manage. I've had no problems changing it or emptying it. It was either too much liquid or backed up for the first few days. It's been 10 days and my intestines seem to be balancing out more. I'm still afraid to add foods to my diet yet. Hopefully soon.
ameslouise
Moderator
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Hi Kris - Glad the surgery went well!
If they removed all of your colon, what are they going to do when they take the ileostomy down? Are they giving you a j-pouch? It is my understanding that they are hesitant to give a pouch to Crohn's patients. Just curious.
Keep feeling well! Take it slow with the food, better safe than sorry!
- Amy
If they removed all of your colon, what are they going to do when they take the ileostomy down? Are they giving you a j-pouch? It is my understanding that they are hesitant to give a pouch to Crohn's patients. Just curious.
Keep feeling well! Take it slow with the food, better safe than sorry!
- Amy
