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Crohn's Disease
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Posted 11/8/2016 8:49 PM (GMT 0)
So I had my colonoscopy today. There was a stricture in my small intestine that prevented the scope from going any further. So now I have to go for a ct/MRI to see how bad the other side of the intestine is. My question is: if the stricture is bad enough to prevent the scope from going any farther, and I've been in the er multiple time for pain and swelling (not to mention being compatacted so bad they had to give me medicine to break it up) why are they making me do another test in two week and then have to wait till January (earliest appointment I could get) to see if my doctor wants to do the surgery? Should I just go ahead and call Duke so I can get a second opinion? It's 3 1/2 hours away from me but I'll make the trip if it means I'll stop hurting. I've been out of work for a week and a half due to a flare up. I'm at the end if my rope here.
Posted 11/8/2016 9:22 PM (GMT 0)
I think you need a second opinion. It sounds like you're well on your way to getting a blockage, which would cause all sorts of dangerous problems.
Posted 11/8/2016 10:56 PM (GMT 0)
That's what I'm thinking Sifigal. Which makes no sense in waiting till January to see my doc again. I get the feeling he just doesn't want to doto do it. I'm going to look around and see if there's any doctors closer tomorrow and see about a second opinion
Posted 11/9/2016 1:42 AM (GMT 0)
I agree that you should probably get a second opinion, especially if your doctor is not an IBD specialist. You mention Duke so I'm assuming North Carolina, I go to UNC they have an IBD clinic as does Duke and I was told that I couldn't go wrong with either of those hospitals because their IBD clinics are good. I like UNC so I haven't had to try Duke but have heard good things about them. As far as the MRI, it will still be useful for a surgeon to see the extent of the stricture so they can formulate a plan for how to deal with it. If the stricture is not too large it may not require a resection but instead a strictureplasty. It is definitely better to deal with a stricture before it becomes an emergency from a bowel obstruction.
Posted 11/9/2016 3:05 AM (GMT 0)
I live in upstate sc and everyone keeps telling me to go to duke. And I understand the purpose of the MRI but I've had one plus numerous ct scan and they all tell me that the scar tissue is The problem. I'm just lost on it all
Posted 11/9/2016 3:28 PM (GMT 0)
I agree u need a second opinion. I felt the same way about the issues im dealing with. I have been going to unc but my dr didnt take me seriously and told me i just had ibs issues not a flare. A few days later i was in the er only to find out it was a flare that showed up on a ct. When i told my dr about the flare she told me to get care somewhere else since i didnt respect her diagnosis. So on jan 17th i will be going to duke. Ive heard a lot of great things about duke. So i think its worth the drive at least for a second opinion
Posted 11/9/2016 11:47 PM (GMT 0)
I think a second opinion is very warranted. My son has Crohn's and had the same symptoms you describe except his became totally blocked (in a very short time) and his GI had him go immediately to a surgeon who decided to remove 4 inches of the TI / Appendix so that it would not happen again. His surgeon stated that although his Crohn's was being successfully treated (remicade, pentasa, azathiorpine, probiotics, ferrous sulfate) and that his inflammation was subsiding the scar tissue continued to grow. (I am not sure how or why!). My son's stricture induced blockage subsided some before surgery which is the best time (according to his surgeon) to complete the surgery. His is 8 months post surgery and in total remission and feeling great! I hope your check up(s) go well and that you get some clarity.
Posted 11/10/2016 5:50 AM (GMT 0)
That's what my doc said. The remicade is working and there are places healing. But the stricture is still bad. Like I said he couldn't get the scope through it and I've been compacted before because of it. I'm worried that it'll become a complete blockage. I go back to work in the am (first day back in a week and a half) but I'm going to see what all I need to get in to duke in my breaks. Worse case I'm sure my pulmonary doc will call in a referral (they're the only ones that seem to care)
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