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Feeling very frustrated, STILL!

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Crohn's Disease
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Posted 9/30/2011 1:00 AM (GMT 0)
Long saga short, I am still feeling under the weather since February when this whole mess started and then the resection in March. My GI is out of ideas. He is still thinking that it is a motility problem, but I really don't think so. I had a gastric emptying test on Monday and got the results today from his staff. Of course they were negative. I was told my doctor would call me later to discuss the result and what my next step would be. I specifically asked to have him call my cell phone because I would be out all day. I got home to a long message from my doctor telling me to call a motility specialist and then call his office to let them know when it is and have my records sent. I am just really mad and frustrated that I didn't get to discuss this with him because he didn't call my cell phone! I waited for his call all day, and then I didn't get it because he called the wrong number. I don't understand the reasoning behind a motility specialist if the tests are negative and want to understand before I wait another few months for an appointment. At this point it will be a full year before I even have an appointment to try to understand what the heck is going on! I know if I call his office to speak with him it will be a few days before I get a return call just because tomorrow is Friday and then the weekend. So every thing just keeps getting pushed back and I keep losing weeks of my life. So darn sick of this........

Vent over for now. mad
Posted 9/30/2011 2:05 AM (GMT 0)
I know you had a resection, but I have a feeling I'm missing a follow-up story... :-/

Is severe constipation the problem? At any rate, while I can't currrently identify with that, I certainly understand the frustration of really wanting to talk to a doctor but not being able to. Or, above all else, the frustration of knowing that something is wrong but not being able to find out what it is.

Good luck; I hope it resolves sooner rather than later for you.
Posted 9/30/2011 2:16 AM (GMT 0)
Zanne...you have far more patience than I. I couldn't deal with the way you have been tossed around, delayed, etc. for as long as you have without losing my temper. You were thinking about the Mayo Clinic once. Is that still something you might consider?
Posted 9/30/2011 2:18 PM (GMT 0)
Zanne, I'm sure they have us jumping through hoops to see how long we'll do it for!! Well that's how it feels
to me. I hope you can end this soon. Hugs.
Posted 10/1/2011 3:16 PM (GMT 0)
I am still thinking about Mayo. I guess my hold up is that the bulk of my problems tend to be random except for what I can and can't eat. I don't know how much of that is the result of the last surgery and how much is whatever is going on. I am holding my own weight wise, but as far as nutrition, I doubt it. I am only eating about 6 different foods. That is what is concerning to me. I would hate get out to Mayo and be having a really good week and end up with a wasted trip.
Posted 10/1/2011 3:37 PM (GMT 0)
Oh dear I do understand where you are coming from. Thats my worries too that if they were to do another surgery, what would my life really be like then. Its so restricted now, what would another surgery do.

I do find life totally different after each surgery. My diet changes, my tolerances change everything. I sure hope this is not your new normal. Ugh!!

Hoping and praying that some answers are found soon. By any chance have you done a pill cam since your surgery? Thats my next step, and am hoping it will provide some answers. But you and I know that doesn't always seem to be the case. Hugs!
Posted 10/2/2011 9:09 AM (GMT 0)
Zanne, I've nothing constructive to add, but wanted to send lots of caring thoughts your way.

(((Zanne)))
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