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Not headed for surgery
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OyWithThePoodlesAlready posted:
well, I just heard back from the dr's office and the MRE showed some inflammation but not scarring. I'm somehow simultaneously relieved to not be headed towards surgery and yet scared I'll feel crummy forever. I have an apt in 3 weeks, just hoping he has other things to try.
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miserable_sob responded:
I hope you can make it without surgery Poodles, since I had surgery 24 years ago and have felt crummy ever since.
 
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OyWithThePoodlesAlready replied to miserable_sob's response:
yeah, its a weird set of emotions, I am really glad I don't need surgery. At the same time, I've also spent much of the last 12 years feeling bad but not getting much better so I'm also fearful that it'll continue like this. I have a new dr though and I'm hopeful he'll have more ideas and suggestions about avoiding the sudden onset blockages

and for what its worth, I was looking at a totally different surgery
 
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miserable_sob replied to OyWithThePoodlesAlready's response:
It's not as weird as it is "good." My life changed drastically after surgery for nothing but the worst. I have tried contacting the Henry Ford Hospital about a colon transplant to no avail. I'd be happy to try one, because after 24 years, I'm sure I don't have Colitis anymore, there's not 1 sign of it. What there is a sign of though is colon that's way too small for my body, which makes my life a miserable living hell.
 
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hannahleigh89 replied to miserable_sob's response:
If you've had the same surgery that you've been talking about having in every post you've ever posted, you don't have any colon left. This would be why there is no sign of Colitis. Colitis only affects your colon.
 
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miserable_sob replied to hannahleigh89's response:
Hannah I only wish I knew how much of my colon is left? The last time I was sliced open though (over 20 years ago) ended my bleeding and other signs of Colitis such as flare ups. But still living with what little colon I have left means sacrifices. I only wish I knew about all the alternatives that I hear of now, before I had my J Pouch surgery. Some of those alternatives sound pretty wild too. None the less, having a good portion of your colon forever amputated is pretty wild too.
 
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LauraLW responded:
Hi. I hope you get to feeling better soon. I'm glad that your dr is ordering some good testing for you and seems to be doing his best to get you some answers and feeling better. The MRE that he ordered for you is a great test, a very advanced way to look at our GI tract, which can often be very difficult to image.

I work in radiology and I think imaging is great for dx of disease, etc. That said...no imaging study is perfect. No radiologist reading those studies is perfect. You can put a lot of faith into imaging testing, but not all. In my own experience, 2 months ago, I was recovering from giardia (intestinal parasite), GI ordered a CT of the abd/pelvis to see if GI symptoms were related only to that, and not a flare. CT showed some imflammation only around my ostomy site. Nothing very concerning at all. A couple weeks later, I was in the hospital. Had a colonoscopy and upper endoscopy and found extensive severe disease in the colon and moderate disease in the duodenum. All unseen on the CT scan.

I guess, what I'm saying is that imaging --especially of the GI tract -- should never replace what you feel your intuition is telling you. Surgery is not always the answer, and it won't cure crohn's, but it is also not something to be afraid of. I'm glad you seem to be surrounding yourself with good dr's. If you do have to have surgery, please carefully research your surgeon. If possible, ask a few of the nurses in the GI office who they would want. Other good resources could be people that assist in surgery recovery, such as ostomy care nurses (WOC's- if that's what you're having) or nutritionists that care for people that have had resections.

Hope you feel better soon!
 
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OyWithThePoodlesAlready replied to LauraLW's response:
Hi Everyone, just thought I'd stop by and I actually ended up getting surgery 6 weeks ago and feel great.

Laura, thanks so much for the reply. I'd gotten so frustrated with the drama of being sick that I hadn't check in on the board again and missed your reply.

In the end, you were right, my GI had me do a pill cam just to be sure (the last colonoscopy they couldn't intubate my ileum so they couldn't see anything that way). He was pretty sure that the double dose of remicade would take care of me but since I'm looking to get pregnant he double checked, and sure enough, the pill cam got stuck.

I had a great surgeon, the GI I see is part of an IBD group at a local med school and the surgeon was the one associated with that group. It was certainly not something to be afraid of, it wasn't much worse than a bad flair and I recovered so much faster than I did from the blockage in December. I just lost 5 inches of small bowel, and that included a skip pattern so I guess its weirdly concentrated. (they also took the icv and cecum since it was right up against the icv)

I see my GI on Friday, hopefully this will lead to a good long remission
 
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LauraLW replied to OyWithThePoodlesAlready's response:
I am so happy to hear that you are doing well!!! Good luck Friday and I hope you DO have a good long remission and also best of luck with growing your family


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