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Numb Lips/Remicade

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Old 12-05-2016, 08:38 PM   #1
Join Date: Dec 2016
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CrohnsAndTired HB User
Numb Lips/Remicade

I have been on remicade for almost 3 years. I was diagnosed at 17 with UC and also had my Large Intestine removed except for a tiny piece of my rectum in order to create a JPouch. I did wonderful for a little while. Then at 23 after having my second child (first at 17) was diagnosed with Endometriosis and had a full hystorectomy 2 months after having my daughter. Then at 32 I was rediagnosed with Crohn's not UC. The doctors put me on Remicade and since then I have had nothing but issues. However, from 23-31 I had virtually NO issues. I have been told numerous times if I come off the Remicade I would most likely die. But here is where s*** gets real.
I now have been diagnosed with a Pituitary Tumor, a Iliopsoas Cystic mass and am gaining weight at rapid speeds. I also have a perineal Gland cyst, and bilateral breast cysts. I am 5'3" and have never weighed more than 150lbs fully pregnant. Now I weigh 185lbs and it's still moving higher. I have a ruptured disk in my L-4/L-5 which threw a chunk of disk into my spine, I am severely tired but can't ever sleep, high anxiety and am on a chronic pain regiment of 2mg dilaudid 4 times a day. I am also on anti-depressants and more recently have started having numbness in my lips... when I start worrying about the numbing it either gets worse or I notice it more. I have worked in various medical offices since I was 19 and I don't think I have ever hated MD's more than I do right this minute. I want off the pain meds, off the antidepressants and off all this other crap but haven't seen the surgeons on what to do about the tumors and masses and cysts... but what do surgeons do... cut. I have already gone under major surgery 5 times and am not 100% sure I ever want to do it again...
Does anyone else have any of this crap above that can shine some light on my life before I explode from too many chemical/pharmaceutical poisons?
Please, Anyone!

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Old 03-02-2017, 07:58 AM   #2
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Re: Numb Lips/Remicade

Wow, you poor thing!!! ******{hug}}}
Not all surgeons go right for the knife. If you have a university medical center near you - try getting an appointment with one of their board certified specialists. I have also seen quite a few commercials for nationwide cancer centers that treat each individual with homeopathic as well as integrated health-addressing the whole body and it's functions, not just the symptom or mass.
07/2006: A/P fusion L4-S1; DX DDD
09/2009: started PM
04/2011: Right rotator cuff tear
09/2011: re-tore shoulder in PT- lost 30% function in shoulder
06/2013: diagnosed with failure of L2-L3-L4

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