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Has anyone ever been told you have Chrons then another doctor says you dont??

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Crohn's Disease
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Posted 4/17/2011 4:43 PM (GMT 0)
This October I was placed in the hospital for 6 days. After a battery of tests they diagnosed me with Chron's diseaase. I had three doctors working as a team to see what was going on with me.
My GI started me on Remicade and 6mp and I did seem to get better. Though my husband wanted me to go to the hospital and doctor he works with. So I went to him and he disagrees with the doctor I was seeing???
Long story short it is now April and I am still getting sick all the time. I either cannot control my bowel movements and go 10-20 times a day or they give me meds that don't allow me to go at all (sorry for being too graphic) I mean I try and it hurts so much when I can't go at all. The pain is almost worst.
I am tired and not myself anymore. This seems to just get worse and I am frustrated to tears. My birthday is this weekend and all I want is a clear answer. Though, it seems doctors are just passing me to someone else. I was told Thursday I need to see a neurologist too and really dont know why.

Thanks for any advice, stories, and or support.
I really just feel now I am crazy... I miss the old me before all of this.
Posted 4/17/2011 4:55 PM (GMT 0)
How were you diagnosed? Was it thru biopsies? If so, then you do have Crohns. And you had not only one doctor on your case but three. I think I would go back with the doctors who diagnosed you and start back on the meds. I am sooo sorry you are suffering so. Gentle hugs!
Posted 4/17/2011 8:11 PM (GMT 0)

If the meds worked for you, it's hard for me to understand why you were taken off them. Has a colonoscopy been done? That would be the best way to see what is going on. 

Posted 4/17/2011 10:43 PM (GMT 0)
Thanks for the replies. Why of the meds? That is what I want to know. My 2nd gi wanted to see how I would do without the Remicade.

I have had a colonscopy 3 times since October. The first one it came up with Chrons but I had food poisoning at the same time. I had food poisoning from my honeymoon and was in the hospital 3 days after my return. Since I had food poisoning they wanted to do another after that passed to make sure it was Chron's. The second time they did an upper endo. The doctor said he was certain it was Chron's after the second.

My third Colonscopy was on New Year's eve. That doctor was unsure and said I needed to try life of medication. I had lost a ton weight in the year because of everything. So my sensitivity to meds made life even worse.

A few days ago I did another upper endo but with that camera pill this time. I am waiting for results.

Thanks in advance for any replies.
Posted 4/17/2011 10:59 PM (GMT 0)
Hey Teacher3 hopefully the pillcam will provide definitive diagnosis. Obviously the meds were working. Now you might have issues if you try to go back on the Remicade. Sometimes when folks stop remicade they can build up antibodies to it. But don't worry their are other options. Keep us posted on your pillcam results. Hugs!
Posted 4/18/2011 7:35 AM (GMT 0)
I was told i had it by my first GI, then the 2nd one said no its IBS, third one says its lazy bowel! My old GI has since retired but was a really well respected man in his field and these two well one is relatively new to it and the other guy who said its lazy bowel pretty much just wants the extra money! He gave me a script for metamucil and sent me on my way. Says if that doesnt work within a month then he would do a colonoscopy. My biopies were not completely normal and based on my symptoms and blood tests the puzzle pieces together to be crohns.

I was also told by the next 2 GIS to go off my medication, but the whole reason i was put on it is cos my old GI said that with patients who are in a grey zone he has seen them go on to develop full blown severe crohns if they are left un treated!

Some doctors will listen and do all they can to help, others just want your money i guess!

I hope you find some answers soon!
Posted 4/18/2011 6:17 PM (GMT 0)
WOW Teacher3

I can't believe how close our stories are.

For me it has been almost a year. First doctor said crohns, second doctor said IBS and 3rd doctor is still running tests. My colonosopy both times came back with mild inflammation and tiny ulcers found in the ileum. I have just had the capsule endoscopy on April 12 and I am waiting for the results. So I should get to see him next month so far. When I brought back the equipment to the hospital he came to see me and said that he thinks I have the start of crohns but will be more sure after the tests results. Only medications I am currently on is Salofalk 2pills 3times a day and i've been feeling like hell just like you.

I wish you the best and hope that they will find out soon for the both of us. I can completely understand how your feeling.

I too miss my old me, I was 35 pds heavier and had D breast now I'm B size, I don't look anything like I use too.

 

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