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Crohn's Disease Forum » General IBD Discussion » Help now! Possible surgery...


03-21-2007, 09:10 PM   #1
laura2002
 
Help now! Possible surgery...

Hi gang - I know I'm new in posting here, but not new in reading all your wonderful posts. Everyone here has been so helpful in reading about all your experiences, and I'm hoping someone out there has some information that can specifically help me now.

6 weeks ago - yes - 6 weeks ago - I did a capsule endoscopy at the behest of my GI doctor. For anyone that's not familiar, it's when you swallow a camera the size of a horse pill, and it takes pictures of your intestines as it goes through. It's supposed to 'take care' of itself within a few days, but it's been 6 weeks. I keep going in for x-rays to track it, and it's obviously still there. Has anyone ever heard of this happening? Anyone have any experience with this? My doctor had me start Entocort two weeks ago, but that hasn't helped. In fact, I feel worse ever since I started it. Now she is pushing me to take 6mp or start Humira. I've already been on prednisone for periods of time during the past 5 years I've been dealing with Crohn's, and have found that a steroid like that hasn't helped. My doctor believes this will help in relieving the inflammation that is preventing the capsule from coming out. I don't honestly have that much faith in her at this point because she can't even tell me how the surgery procedure would be done, how long I would have to stay in the hospital, etc. I realize she wouldn't do the procedure herself, but gimme a break - isn't she supposed to know about these things, being a GI doctor?? Is 6 weeks really a reasonable amount of time to leave this thing in there? Isn't it going to eventually attach itself somewhere, and then it's a real problem?

In short - I'm looking for any information from this wonderful encyclopedia of knowledge we have of a community here to help me make my decision. Surgery? Drugs? How much longer can I really leave this camera in there before it does some real damage, and this surgery not only becomes necessary, but major?? My doctor has been telling me every week that since I've been having no symptoms of blockage, that I have nothing to worry about. Well - easy for her to say. She's not living with it.

Thank you all for your consideration and help. I'm soooo glad this forum is here. I have no one else to talk to.

Laura
03-21-2007, 09:47 PM   #2
carolinajak
 
I wish I had an answer for you. Maybe someone else can help with the medical facts. My advice would be to speak to another GI for a second opinion. Preferably one that works at a teaching hospital if at all possible. If you tell them its an emergency you should be able to get a quick appointment.
03-22-2007, 09:23 AM   #3
ruthymg
 
Hi, I'm afraid I've never had this test, so I can't be of help. But, I would seek a second opinion if I were you. Better to be safe than sorry.


Ruth
03-22-2007, 09:31 AM   #4
Mazen
Senior Member
 
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Join Date: Nov 2006
Location: Beirut, Lebanon
Hi Laura. I once asked my GI about this capsule and he said it's not for me , because my Crohn's is in my terminal ileum and it's narrowed due to Crohn's (I also had an obstruction 2 years ago). So basically he was afraid that it would get stuck there.

Where is you Crohn's located? did your GI check this? I think if he ordered such a capsule knowing you have narrowing, you should seek a second opinion asap.

Good Luck
04-03-2007, 10:45 AM   #5
laura2002
 
Thanks for your replies. I've met with the surgeon, and he of course, being a surgeon, wants to take the capsule out before it has a chance of becoming an ER issue. But on the other hand, he said even though he specializes in colon surgeries, he and his collegues don't like working on Crohn's patients because, 'we open you up and we never know what we're going to find.' Plus the risks with the surgery sound awful. We're going to try a month of high-dose prednisone (trying to reduce any inflammation) and a muscle relaxer to try and help this capsule through. If it's not gone by then, I'll have to make a decision on whether or not to just live with the capsule and hope that it never causes a blockage, or have the surgery and take the risks.

Thanks again for your help, all.
04-04-2007, 01:54 AM   #6
tinglebell
 
I knew this story sounded familiar, so I went searching and I guess your case is not unique to crohn's pts. Because we develop strictures due to scar tissue, even nuts can get lodged. (That's what used to cause my obstructions.) I can't believe you haven't obstructed yet, that is a darn huge capsule. Any way I found this particular post on healingwell.com forum/crohn's, but I am not a member so couldn't get any more info. I also saw someone had posted a picture of a camera she had to have removed surgically, sorry, can't remember where. I was surfing frantically a couple of months ago when I started a flare and went back on meds.

Posted Yesterday 8:15 AM (GMT -6)
Funny you should ask. I am nearing the end of treating sclerosis of the right eye with a detached retina. My retina specialist has had me on 80mg of Pred for about 6 weeks and now down to 40. He reccomends a Rheumy since they are more able to treat autoimmune/steroid issues.
That was the first I heard of it too.
Dave D.


--------------------------------------------------------------------------------
Retired male in late 60's. Perforated Colon in 92. Diagnosed as Ulcerative Colitis in 93. Uncontrolled flareup in 97 dictated J-pouch surgery. 04 Capsule endoscopy diagnosed as Crohns not UC. Emergency surgery in 05 to remove lodged camera capsule. Same G.I. busted for drug abuse in 1/07. Biopsies positively diagnosed Crohns at that time. 12/06 Started Naltrexone. 2/07 Seem to be in remission.
Married with 4 grandkids.
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