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Crohn's Disease
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Posted 10/7/2015 1:00 PM (GMT 0)
No one will help me. No ER no infusion center. Doctor doesn't know what to do. I have no quality of life. I'm 43 a widow. I've had neck surgeries. Shoulder surgery. I have been treated for latent tb.. I have SIBO..which has been treated... pernicious amemia..and my killer is crohns disease. I live in western ny. My cimzia stopped working. All meds have been tried. No infusion center will take my secondary insurance for remicaid.. I have Medicare and Medicaid. The pain is like my insides went thru a meat grinder filled with gasoline and a match was lit! now they have me on humira.. not working! it feels like a slow painful death.. what do I do. I lay in bed and cry. I am chained to my bed.. no quality of life.. lost 30 lbs and don't want to eat..only makes it worse.. if anyone out there can help me.. please please do
Posted 10/7/2015 1:07 PM (GMT 0)
Have your records been sent to a place like Mayo Clinic to be looked over?
Posted 10/7/2015 1:09 PM (GMT 0)
Wow, I have been there myself and then was dx with LYME's Disease and a ton of antibiotics helped me!! Have you checked into Lyme's? UC meds help a little for me, but antibiotics AND asacol HD have given some sort of life back, I actually can go outside and do stuff i.e. go to the store, I'm not hiding in fear.

Please hang on and ask a doctors about antibiotics, it might help.

Posted 10/7/2015 4:28 PM (GMT 0)
since you are in wny have you thought about Cleveland Clinic? They are tops in GI treatment.

((((hugs))))
Posted 10/7/2015 4:58 PM (GMT 0)
Try Calling the information specialists at the Crohn's foundation. They may be able to help both with navigating your insurance and with doctor referrals. Don't give up....you might be able to find a treatment regimen that will help. http://www.ccfa.org/living-with-crohns-colitis/talk-to-a-specialist/
Posted 10/7/2015 7:24 PM (GMT 0)
Thank you all. So much.. Mayo clinic truly is not far. I've been there once.. no one could diagnose me when I first had crohns.. the tests they ran didn't show a thing. I was skin and bones. Couldn't eat.. my family thought I was dying. I came back to ny.. left my Dr. A throat and mouth specialist referred me to his neighbor in the same office building.. the new Dr did a video cam capsule.. thank you Lord! .. she got results.. was floored.. a colonoscopy can't reach it.. and an endoscope can reach it.. complete erosion in the small bowel. my whole world turned around after that .. I even had my gyn ready to do a hysterecomy .. we we're grasping at straws.. first he did exploratory.. there we're huge masses of scar tissue. We still cannot figure it out. My kids we're born without c section. Never had a blow to the stomach.. but I hear crohns can do that.. this Dr loves me to pieces.. she has always stood up for me when other drs said there's nothing wrong .. my humira is due today.. but what is the point.. it doesn't work.. and I'm crying again.. I just want my life back..
Posted 10/7/2015 9:25 PM (GMT 0)
I'm really sorry for what you're going through. Bit of a loss what to suggest though... Such extreme pain doesn't seem normal unless you have strictures. How much of your small bowel is affected? Is surgery - most likely a bowel resection, but can include strictureplasty or balloon dilation - a possibility?

I'd also discuss the possibility of enteral nutrition with your doctor. Basically, the idea behind that is to bypass the bowel when digesting food. It can sometimes be a treatment for Crohn's in its own right, but probably the main point of it is to provide essential calories at a time when you can't get them from eating normally - particularly if you need to get your weight up for surgery.
Posted 10/8/2015 12:08 AM (GMT 0)
I agree with NCOT - some sort of IV nutrition for a while might be a really good idea.
Posted 10/8/2015 1:27 AM (GMT 0)
I too think you should be thinking surgery right now. Have you had any previous resections?

Also agree with the previous posters suggestions that you should get onto enteral nutrition. Humira may take longer to work, so give it time, but you should still keep trying to find a way to get coverage for Remicade.

Remicade is still the state of the art anti-TNF. You will probably find that it would be the most effective med for you.

I live in Canada, just across the border from Buffalo.
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