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Crohn's Disease
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Posted 4/16/2012 10:49 PM (GMT 0)
Hello, I have not been on here in a very long time.  I had a total colectomy in Feb of 10, they could not figure out why I always had so much air and illius in my intestines daily.  So since I had my surgery did ok for like 4 mons...then went back to all the air stuff.


Well finally my new gastro doc did a endoscopy and I have gastroparaesis really bad.  Im sick every day with all the burning and sour taste in my mouth, and now I have a stomach and sm intestines that no longer work 99 % of the time.  So put me on Reglan that did not work now for 2 mo he has had me on erythomicin 3 x day for 2mos now and it quit working like a mo. ago.

So I am just at the end of my rope does anyone have this?  He said that he is running out of med options so all that remains is a drastic surgery, and I don't want that.

If anyone has any ideas for me plz help,  I really thought that my huge surgery the Total Colectomy was the ans to getting my life back, but its been horrible, I maybe have 2 good days a mo.  I am back to not eating again if that's what it takes to get my doc to help me.

I starved myself the first time before I had my surgery and lost 138 lbs in a yr...so im 124, cant gain and everything I eat makes me sick...I don't know what to do anymore???

Leslie

Posted 4/16/2012 11:30 PM (GMT 0)
There is someone on here who has BAD gastroparesis. He's on an NJ feeding tube! I'll try to get him to talk to you! (:

I know the feeling. I have crohn's in my stomach so I can throw up a meal I ate DAYS ago.
Posted 4/17/2012 8:12 AM (GMT 0)
Dawg!!!  Dawg is dealing with this now.  Sorry you are having to deal with this.
Posted 4/17/2012 4:44 PM (GMT 0)
I have had some gastroparesis issues and have a motility problem since my last resection 3/11. I tried the Erythromicin but it didn't work for me. My doctor put me on Domperidone. It is not approved for use in the US but you can get it from compounding pharmacies and from Canada. It is widely available in Europe where it is an OTC drug. It helped some, but then stopped, since most of my issues seem to be further along the digestive track, but it might be some help to you. Good luck.
Posted 4/19/2012 9:01 PM (GMT 0)
Hello, and thank you all for you in put.  Yes I would love to chat with Dawg.  Zanne, my insurance will not cover that drug.  I have been calling my gastro doc for 2 weeks now and he still has not responded so I just called him again.

The gastrophrosis causes burning like crazy and sour taste all from  my stomach.  Causes a lot of pain in my stomach area...hope Dawg gets ahold of me...ty

Leslie

Posted 4/19/2012 11:05 PM (GMT 0)
My insurance will not cover it either. I pay out of pocket for it. I don't know your financial situation, so I can't speak to it. I will tell you that I get it from a local compounding pharmacy (I am in Massachusetts, US). I have gone and picked it up, about 30 minutes from me, and also had it shipped. It cost me $69 to pick up, and $75 to have it overnight shipped by FedEx. In the grand scheme of being able to function, I consider that a bargain. Most people pay more than that each day for a coffee when you figure out what the per day cost is. This is for 120, 10 mg capsules.
Posted 4/19/2012 11:30 PM (GMT 0)
Email me & I'll give you his email! (:
Posted 4/21/2012 4:27 AM (GMT 0)
TY, SO MUCH.. I HAVE JUST BEEN SO ILL WITH THIS AND DESPITE CALLNG MY DOC EVERY OTHER DAY WITH NO, NONE, NOTA, REPONSE IS DRIVING ME NUTS.  I pray for others who are worse off than me but it's still hard to be me.

Leslie

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