New to forum..my journey with crohns

Crohn's Disease Forum

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Joined
Nov 19, 2016
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Hi my name is Cindy I am new here. I have Crohn's disease, I had never even heard of Crohn's disease until 2005. I was working for a DR. Who had noticed I was not feeling well for at least 2 days he was concerned it was my appendix since the pain was in my LRQ so he sent me to the ER (I wasn't happy about it). They did a CT scan and said I needed a colonoscopy, sooo 2 days later had that procedure done and was told that I had mild Crohns. Now after figuring out what Crohn's disease was I took a flashback journey of my health issues, I had been to the DR many times because of this same pain that I was experiencing and was told I had an STD to it was all in my head, even had a hysterectomy because of it. While I was thankful to finally know what was going on I was really pissed off at previous docs for making think I was crazy.
Since then my Crohn's was in remission for a number of yrs, then 2 yrs ago had another colonoscopy and it was like he had unleashed the devil up in there it has been non stop pain. Am on enticort, 6 mp, and remicade which will soon stop because I can't afford the (affordable healthcare) because I am single and have no income I am living with my son and his wife while waiting on disability so I would have to pay full premium, how am I Sappose to do that? So I am looking into essential oils, hemp oil as an alternative to the hundreds of dollars I've been spending on pharmaceuticals. Any advise I could get would be so much appreciated I am literally at my wits end. 😢
 
Welcome! I can't always reply to as much as I wanna on here as I've got a 2 & 3 yr old running around 😳😂 BUT I had to take a sec and send my best wishes to you. I hate that these meds cost us so much. I'm on Humira and there's a program that greatly reduces the cost for me to a $5 copay. I guess Remicade doesn't offer something similar?? I also remember my GI once had me fill out some sort of low income form to see if I could get approved for a hospital subsidy...can you look into that to pay for your meds?
I have to get an MRI here Soon that's gonna cost me $300 out of pocket through HuBs insurance and I'm here complaining.
I'm sure someone on here has some better natural ideas for treating Crohn's than I know of
but I will say that many people have improved with diet changes (sometimes drastic one like complete elimination of sugars) I have even seen improved energy levels and less arthritic pain by reducing my sugar. Everyone is different and what works for one will not for the other. You'll be in my prayers!
 
If you stop Remicade, there is a possibility that the disease could get worse. You could see if you qualify for Remistart or some other financial aid.
 
I do have a remistart card and it still cost me over 100$ a dose. But that was with my ins maybe it will be different without.
 
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