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There is nothing wrong with me, ya right!

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Crohn's Disease
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Posted 6/21/2011 9:42 PM (GMT 0)
I have been waiting for a week for a letter they say they mailed. After a week of trying to chase down the results from my MR Enterography, I finally got the secretary to read me the report and then got her to get some more info from the doctor on call. Basically, it shows nothing. All the positive stuff the doctors had to say while I was in the office 3 weeks ago about further testing after the MRE was just BS. I was told to follow up with my local GI and maybe get a second surgery consult at my local hospital. My GI is the one who sent me to them because he doesn't know what to do with me!!!! And I was just discharged from the surgeon's care on Friday from my surgery in March. Surgery on what, since their test showed nothing. I just don't understand what they want. I was in the hospital 4 weeks ago with another blockage, documented, so did I somehow trick the machines at the local hospital? Blockage one week, totally clear the next, nothing wrong, don't need to do anything. I guess I am just some sort of magician. Of course, this conversation took place at 5:02 so I can't call my doctor until tomorrow morning, and with my luck it will be his day off or his day for procedures. I am so tired of spinning my wheels trying to get better and not getting any help.

I have 2 summer vacations coming up in July and I am not getting any better. I am so afraid that I will end up with a blockage while I am away, or just plain be miserable. Its one thing to be in pain and feel horrible while you are home, but not while you are on vacation. I am running out of time to find out what is wrong! I can't continue to eat nothing. I have no energy. I'm grumpy. I have a headache all the time from no nutrition and I am in pain constantly. Usually I have a pretty "glass is half full attitude", but I am all "half empty" right now!!

Sorry, needed a vent.
Posted 6/21/2011 11:30 PM (GMT 0)
You poor thing. You have really been through the ringer lately. Maybe a total change is needed. I hear there's a good GI in Nashua, NH - rated the top GI in New Hampshire. Maybe a fresh start with your latest tests, except the one that showed nothing, forwarded to him for a second opinion along with medical history. Or a trip to Nashua? I think you're going to have to make a change because the ones who found nothing are going to write you off. Thinking of you with hopes that things can turn around soon.
Posted 6/21/2011 11:35 PM (GMT 0)
I would agree with another opinion...there is obviously something going on:(

Could you be dehydrated as well as in pain?
Posted 6/21/2011 11:46 PM (GMT 0)
That's ironic older, I am actually sitting in Nashua as I read your response. I have a friend who has been dealing with a GI here and was just ref to MA. I will see wh5'6 GI has to say.

Memo I doubt its dehydration since I drink water constantly but I will Ty boosting my intake and see what happens.
Posted 6/21/2011 11:56 PM (GMT 0)
Oh Suzanne, what a crock of ****. How can it suddenly disappear, especially when you're still
having problems. I wonder if perhaps they found a mistake on their part, and this is the way they're
handle it. I would put nothing past some doctors.

darn I'm as pissed as you are. Bless your heart!!
Posted 6/22/2011 11:33 AM (GMT 0)
Presto nothing up your sleeve....except a roaring lion! Even if you really like your GI, it may be time for a change. I found that I had a great GI for many years. However after many years of CD gut in remission, he started ignoring the other issues that I had due to the CD. I just wasn't on his radar any more. I switched just to get new insight.
With how crumby you are feeling, you need someone who will listen.
I hope you get some relief soon and keep supplementing your nutrition so you don't disappear like your disease apparently can!
Posted 6/22/2011 11:57 AM (GMT 0)
I no how ur feeling i had a barium meal follow through and it showed signs of chrons in my terminal ilium now after scans and colonoscopy they cant find anythink but inflamation yet i have pain in my lower right abdominal its so silly how can one person say one thing and another say nothink? they could not get into my ilium through colonoscopy so have to have that repeated and use a smaller camera to get in. I just had mri scan friday and waiting for results!! Im so in the dark and can understad ur frustration. Hope u get sorted
Posted 6/22/2011 12:57 PM (GMT 0)
Big hugs Zanne!!!  I feel your pain, as I am going thru something similar.  Not surgical, but still my Crohns.

My doc tells me on Monday that all my blood results except my sed rate test look normal.  But my HCT & HGB are both lower than they have been in awhile.  I am so sleepy all the time.  Yesterday I had to leave work early because I felt so bad.  Went home and slept four hours straight, then went on to sleep the night thru and I am still wiped out.  So don't tell me nothing is wrong, there is something wrong.  Dang doctors!!!!

Hope you are able to talk to your doc today and hoping he can help you figure out whats going on.  Hugs!

Posted 6/22/2011 2:47 PM (GMT 0)
@zanne
One more thing to consider. When they did your surgery, perhaps blood flow to the resection site was diminished in the process. Could be a vascular problem. My husband had a similar problem for diverticulitis surgery. They removed so many blood vessels, his circulation was impaired to the site resulting in pain and an unresponsive colon. Have they done studies to look at your circulation there. Maybe they are so busy concentrating on the surgery itself, they aren't even looking at that possibility.
Posted 6/22/2011 3:32 PM (GMT 0)
Interesting possibility. I am not sure what the MRE shows but I know it shows some vessels, so I think that would show up.??? But, I am having the same issues I have had since before the surgery, so I think whatever is going on was not fixed with surgery. I know there was some narrowing from scar tissue, but even the surgeon admitted that it wasn't that small. There were a lot of adhesions removed, but I am still having blockage symptoms, or ileus symptoms, since the 2 things look about the same on a CT. I am waiting for a call from my local GI now to see where I go from here.
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