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My worst flare up

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Ulcerative Colitis
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Posted 3/16/2018 12:16 AM (GMT 0)
I was diagnosed with UC in 2006. Over the years I've had flare ups that were controlled by Mesalamine suppositories, hycosamine and diet. Usually I waited it out and it passed in a few months. Recently, I got another flare up. Now this one is the Mother of all flare ups. Instead of getting better it keeps getting worse. I'm on 40 mg predinose, lyalda, hycosamine and barely eating but the pain is non stop. I literally have pain all day. I am on the toilet 12 times at least a day. What a nightmare! My insurance sucks and won't pay for any biologics. My doctor is trying to get it approved anyway. I'm starting to consider surgery at this point. I've read other people on here that got surgery and are feeling great. I'm wondering though, what kind of doctor do I see about surgery. I can ask my gastro, but she is out of town all week. Any answers appreciated.

Thanks
Posted 3/16/2018 12:57 AM (GMT 0)
you can consult a colo-rectal surgeon - but should really try biologics 1st
Posted 3/16/2018 1:02 AM (GMT 0)
I don't think you should rush to surgery because of insurance issues.
I think step 1 is stool tests. Have you had any?
A colorectal surgeon is who you would consult with about surgery. You would need to have some tests to ensure you're a good candidate before considering surgery. With your insurance issues, getting the tests you need is probably as difficult as getting biologics approved. I hope you can get biologics approved quickly. Some people have nearly overnight success with biologics. Are you using rectal meds at all? Can you try 6mp or imuran?
Posted 3/16/2018 2:35 AM (GMT 0)
My doc prescribed Canasa suppositories but Molina insurance wouldn't pay for them. They were $1000 without insurance so I couldn't get them. I need to find out if they will pay for a lower dosage. But my doctor says I need 1000 mg dosage. The insurance company wants to dictate what my treatment should be rather than letting the doctor do that.
Posted 3/16/2018 5:06 AM (GMT 0)
How about ordering from Canada and getting generic. That could be a lot cheaper.
Posted 3/16/2018 10:34 AM (GMT 0)
God, insurance again!! It seems to me, that the insurance companies are dictating our healthcare. With all the various groups of people in the US protesting this or that issue, wouldn't you think some group would be asking WHY our insurance companies and drug companies can't provide good and reasonable care for our citizens!? I can fully understand why insurance companies don't wish to pay the exorbitant prices for the drugs; and I really don't understand why the drug companies charge so much FOR their drugs. I understand that they must pay for the research, but I also understand that many research projects are paid for with government grants. Seems that since taxpayers are paying for most of the research; taxpayers should get a fair price for the much needed drugs. Greed is a terrible thing; even worse when people who are ill must suffer for it. STILL... I do hope your doctor can appeal to your insurance and they will help. I'm also sorry that you must have the additional burden of worry added to this 'crappy' illness. Be safe and hopefully, soon you will find remission.
Posted 3/16/2018 3:56 PM (GMT 0)
Thank you so much. Yes, it seems the insurance companies and doctors go at each other and we are caught in the middle. Its a shame, in a country this powerful. The funny thing is while my insurance company is busy haggling with my doctor over what medicine they will pay for, I am in and out of ER which is costing them more money! I'm doing my best with what I have to heal. Resting, prednisone, probiotics, mesalamine tablets 800mg, and small meals. Yesterday I was in non stop pain for 5 hrs. No amount of pain meds was helping. One thing for sure I'm leaning into God more and trusting him. Hopefully, there is a lesson learned at the other end of this.
Posted 3/16/2018 5:25 PM (GMT 0)
Once I was able to get into the hands of a really excellent GI team, they ditched Prednisone and put me on a biologic called Tacrolimus (they usually use this for organ transplant patients), to bridge me to my Entyvio infusions. It worked wonders for me, and had no side effects.

Prednisone treated me poorly. I'm terrified of it. I'll do anything I can to stay far away from it.
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