Hello!! Although I've been diagnosed with Crohn's for 4 yrs now, this is the first time I've joined a forum for much needed support, it's so much easier to talk to people that are fellow Crohnies because some things people just won't understand. I'm 24 now and been on a variety of pills (you name it, i was on it) and then the need for more aggressive therapy kicked in 3 years ago so I have been on Remicade infusions and thus far it has been a miracle worker for me, however, in the past month I've been experiencing a big flare-up and my GI keeps telling me that surgery might be the next step since I'm not responding to the Remicade anymore. I just wanted to reach out and hear strories about any of you who have experienced the lessening effect of Remicade and/or have had a small intestine bowel resection and what the surgery and recovery were like. My prayers go out to everyone going through this disease!!
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DustyKat
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Hi Bess and :welcome:
I don't have CD, my daughter does. This must be a very stressful and scary time for you but you have found just the right place for support and information. There are so many experienced and knowledgeable people here.
Roo didn't have the opportunity to try medication prior to her surgery (it was emergency surgery) but she went from an extremely ill young girl prior to surgery to becoming a healthy young woman post surgery. Roo was in very poor condition so her full recovery time was probably a little longer than one would expect. Having said that her post op time was uneventful and she has been in remission since that then, 4 years now, with the help of some Imuran. She was in hospital for 6 days, at home resting for 3 weeks and then back to school. So in our experience surgery has been a very positive intervention. Oh and it was the same surgery you may be facing.
I hope that helps to answer some of your questions and no doubt others with more experience will be along to help.
Take care and all the best
Dusty
I don't have CD, my daughter does. This must be a very stressful and scary time for you but you have found just the right place for support and information. There are so many experienced and knowledgeable people here.
Roo didn't have the opportunity to try medication prior to her surgery (it was emergency surgery) but she went from an extremely ill young girl prior to surgery to becoming a healthy young woman post surgery. Roo was in very poor condition so her full recovery time was probably a little longer than one would expect. Having said that her post op time was uneventful and she has been in remission since that then, 4 years now, with the help of some Imuran. She was in hospital for 6 days, at home resting for 3 weeks and then back to school. So in our experience surgery has been a very positive intervention. Oh and it was the same surgery you may be facing.
I hope that helps to answer some of your questions and no doubt others with more experience will be along to help.
Take care and all the best
Dusty
Hi Bess, does your GI just think that the bad part of the small intestine was too far gone before you started Remi? I know you are scared but there are many on here who have had resections and several others to advise you on the need to shift meds from time to time. I hope you find the answers you're looking for. Good luck and welcome!!
Crohn's 35
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Hi Bess, glad you found us! Remicade has been great for so many (I reacted to it severly) but I have noticed with some , just before their next shot they have symptoms and they hang in there until the shot and a day or so later it kicks in. Surgery maybe for you, if Remicade is petering out. Some gi's up the dose but Remicade does have sides, like many of the other drugs you and ourselves have been on. You are welcome to ask any questions, give your insights, or just vent. We know how you feel. Keep us updated on your condition ok? Hugs.
Wow I'm so glad I joined, thanks to everyone who responded, I already feel so much better hearing everyone's advice!!
DustyKat - I really appreciate you sharing your story about your daughter, that's wonderful that the surgery has allowed her to remain in remission for 4 years, reading your story has made me believe that as scary as surgery might be, it could potentially help me in the long run.
Dexky & Jettalady - I'm sorry I think I forgot to mention in my original post that my GI did increase my dosage of Remicade this last time a week ago since I was having pain rather quickly after my last infusion but I'm still having major pain in the lower right quadrant (which is mostly my problem area of Crohn's). Last year my GI did a colonscopy and basically couldn't even complete it because he was unable to push the tube up past the area of deformity so I would say yes that area of my small intestine is definetly pretty bad & surgery would seem like the best option at this point.
Well I have an appt with my GI this Thurs so I will update with more information on how things are going. Thanks all for your support!!!
DustyKat - I really appreciate you sharing your story about your daughter, that's wonderful that the surgery has allowed her to remain in remission for 4 years, reading your story has made me believe that as scary as surgery might be, it could potentially help me in the long run.
Dexky & Jettalady - I'm sorry I think I forgot to mention in my original post that my GI did increase my dosage of Remicade this last time a week ago since I was having pain rather quickly after my last infusion but I'm still having major pain in the lower right quadrant (which is mostly my problem area of Crohn's). Last year my GI did a colonscopy and basically couldn't even complete it because he was unable to push the tube up past the area of deformity so I would say yes that area of my small intestine is definetly pretty bad & surgery would seem like the best option at this point.
Well I have an appt with my GI this Thurs so I will update with more information on how things are going. Thanks all for your support!!!
Silvermoon
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Welcome to the forum, Bess!
Most of my disease has been in my large bowel, but surgery is surgery, and comes with it's ups and downs.
I, too, was on Remi until I started building up antibodies to it, but for 3 years it was wonderful! I called it my "gogo juice"!! LOL!
Either way, as you read more through the forums, you will find many who have had experiences with both...some great...some good...some not so good...but we are all here to help each other through the rough times.
Glad you found us!
Most of my disease has been in my large bowel, but surgery is surgery, and comes with it's ups and downs.
I, too, was on Remi until I started building up antibodies to it, but for 3 years it was wonderful! I called it my "gogo juice"!! LOL!
Either way, as you read more through the forums, you will find many who have had experiences with both...some great...some good...some not so good...but we are all here to help each other through the rough times.
Glad you found us!
