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I Don't know what to do anymore! Any advice?

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Crohn's Disease
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Posted 2/3/2011 2:57 PM (GMT 0)
 I had bowel resection on dec10th and since found that I had a leak in my bowel. My surgeon has inserted a drain tube to evacuate the abcess(which is sucessful) and ordered IV feeding n meds to allow the leak a chance to heal.  While being in the hospital it drained an average of 30ml/day. I have been doing this same since then but at home. My intakes (sips of water and ice chips) orally are approx. the same as the hospital as are my amounts in my drain tube each day! Correct me if I'm wrong but that equates in my books to no further progress. Well today I go for a ct scan and on the 15th they anticipate slowly pulling the drain tube back and it closing itself. I disagree, i began eating and thats when we discovered the leak the first time. Nothing has changed other than been on TPN for over a month, but there has been no progress in the healing process. Am I wrong for opposing this. I think I will end up back in the hospital with the same infected abcess that made my chances of a corrective surgery extremely higher risk the first time. Should I be insisting that this not continue? I'm soooo frustrated that they are gonna mess things up. I am aalso influenced by the fact that I'm running outta Disability Insurance at work and my job is at steak here as well.
Posted 2/3/2011 3:52 PM (GMT 0)
MTK, are you treating your CD with any meds? From what I understand, Humira and Remicade are usually the best choices for dealing with fistulas - not sure how that relates to abscess. I agree with you on your analysis of things and support your effort to get a better plan, or at least one that makes sense!
Posted 2/3/2011 4:35 PM (GMT 0)
voice your conserns to the dr's. they should hear how you are feeling about all this
good luck
Posted 2/3/2011 5:21 PM (GMT 0)
If you are only talking to the surgeon then I would call your regular GI and ask for an appt. to discuss the treatment plan.

And you can ALWAYS say NO if their explanation does not satisfy you.

And you can ask for a 2nd opinion consult prior to agreeing to the withdrawal of the drain. Preferably by a surgeon who specializes in treating CD.

Best wishes,

Patricia
Posted 2/3/2011 5:49 PM (GMT 0)
MTK957-I would get a second opinion and I would not let them take the drainage tube out until you do.  I've been through what you are going through and unfortunately, I think you are going to have to have surgery again to fix it. 

Good luck!  I feel for you--it really sucks.


Angela

Posted 2/3/2011 7:55 PM (GMT 0)
kazbern- I'm unable to begin my crohn's treatment until I heal from the surgery. I need my immune system right now.

takilra-I told my surgen I didn't agree with the treatment n I got the salesman speech about how waiting will reduce the chances of complications and these bowel leaks at the point of surgery are commonly healed with time and bowel rest!!!

rlsnights-just had a follow up with my GI doc and he's totally on board with whatever surgeon wants to do. He told me I don't need to see him for at least six months cuz I won't be healed until then so we can start treatments.

aronk-I agree that surgery is necessary. I don't want it nor do I look forward to it but it is what it is I just need to move on.

Thanks all of yo for your insight. I just found out that we are going to discontinue my antibiotics thru the IV unless my WBC count goes up. I am already experiencing a mild fever 12 hours removed. I plan to wait for it to present as an infection and then I'm going in and making my stand!!! I have sat back and waited long enough. This is more evidence to support my argument.
Posted 2/4/2011 4:43 PM (GMT 0)
I agree with your plan, MTK957.. Stick to your guns!!!! Once, they take that drain out it's going to create a fistula in your abdomen... You have very a minimal chance of it healing with meds if that happens.

Good luck!
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