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Crohn's Disease
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Boston
Regular Member
Joined : Mar 2005
Posts : 61
Posted 8/28/2017 10:16 AM (GMT -7)
Hello all. I have not been on this form for quit some time and am look for some advice/experience/guidance. I will try making this short. Basically, this June I went to the hopital with stomach pain. Had an MRI cat scan with the IV infusion dye. They found inflammation as well as a small perforation, with no leakage. Instead of of rushing me to surgery, they kept me in the hospital for about 6 days pumping me with the usual meds. Took another cat scan a week later and the perforation was gone but the inflammation seemed to have grown some. Was sent home, took my 14 day dose of typical meds again (cipro ,flagyl ,prednisone. I finished that coarse and was back in the hospital later with feverish symptoms. This time, I was told there is not much more that could be done and needed surgery. Which at that point I understood. The part is that if i went into surgery that week, I would have to end up getting a temp colostomy bag, which I know no one really wants. My other choice for this to try and get around this option would be to try and drain the abscess around the inflamed area, hopefully so the medicine would work better. I had the drain in for about 6 days and had a picc line in to inject the medicine in directly for 25 days. 2 weeks in, I formed a blood clot under my right arm pit on the side of the picc line. Went back and they took the picc line out and have been on eliquis for the blood thinner for about 12 days now. The part now where I am looking for feed back is I was scheduled and still am to have surgery this September 12th. I am going to to be seeing a vascular specialist hopefully this week. I sort of have 3 choices and 2 would guarantee I would have a temp bag, which I do not want but would have to have if it came down to it. Or I could maybe wait another 2 to 3 months and hope not to flare up in the meantime. Any advice or experience anyone could provide would be very grateful. Thank you
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huckleberry
Regular Member
Joined : Sep 2007
Posts : 338
Posted 8/28/2017 2:54 PM (GMT -7)
I don't really have any advice for you - but just sending my support. Sounds like you've had a hard time with this!

The one thing I would say is that the people I know who have had the temporary colostomy almost all feel that it really helped them heal / turn a corner. They tend to wish they hadn't waited so long avoiding it.

Every situation is different; but sharing this in case it's helpful.
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73monte
Veteran Member
Joined : Mar 2007
Posts : 2386
Posted 8/29/2017 6:13 PM (GMT -7)
I'm not sure I understand your situation. So if there's no longer a visible perforation, and you're having symptoms, why are they recommending surgery? If inflammation is showing and progressing, why aren't they attempting to control it with medicaiton? Do they feel that they need to remove any of your small intestine at this point?

Just really hope you're feeling better soon, and get the right treatment plan.
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scifigal2k
Veteran Member
Joined : May 2012
Posts : 3669
Posted 8/29/2017 7:49 PM (GMT -7)
I agree with both posters. If you're having symptoms in spite of heavy meds like biologics, then a surgery might be the wisest idea. However, if you haven't tried any meds, then I think that should be your next step.
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clo2014
Veteran Member
Joined : Feb 2015
Posts : 1508
Posted 8/29/2017 8:35 PM (GMT -7)
I agree with all of the above.

You are in my thoughts and prayers!

Clo

PS. I ended up with a colostomy. I was very surprised by the ease of adapting to it. Surgery ...wearing a bag...is what you make it. Best of luck to you.
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