Stress From The Aggravation of Doctors Giving Me a Flare

Are you eligible for COBRA insurance, Medicare, or Medicaid?

I've read a lot more posts of people getting terrible care and ambiguous diagnosises than I'd like to over the years. Certainly not unique. Not sure why they tell you who you can and cannot see, when you aren't limited by insurance saying who to see. I'd book with a gasteroenteroligist and schedule a barium enema and x-ray to diagnose, if cost is of a concern. It's still a valid means of diagnosing. Another option would be a flexible-sigmoidoscopy which is a lot cheaper than a colonoscopy. If it comes to it you can always go to the ER to get things moving along faster but it could be costly without an insurance.

Sometimes you can get a primary care doctor (or general practitioner) to prescribe an anti-inflammatory mesalamine (what a gasteroenteroligist would prescribe for UC). I'd ask for generic Sulfasalazine or generic Balsalazide Disodium as they are the most cost effective. Possibly ask for prednisone as well.

Unfortuntely, you are going to need to be your own best advocate for what you need to be well. Lots of calls, pressing people, and insisting on what you need! Many of us find we need to do this ourselves, especially when what we get isn't enough or correct.

In the mean time, eat bland, well cooked, non-spicy foods (soups, broths, chicken,and potatoes) to help your symptoms and avoid high fiber diets, caffeine and alcohol which might worsen your symptoms. Only use Tylenol and avoid all NSAID pain relievers (Aspirin, aleve, Bayer, and so forth) as they worsen our IBD symptoms. Stay well hydrated the best you can, as dehydration is always a concern with frequent diarrhea. Heat-retaining pads and hot water bottles are good for temporary relief of aches and pains within the lower abdomen.

What you don't understand is that I can't refuse anything. Being that it is low cost that the state is paying for, I have to follow exactly what the internist says. I'm not allowed to see a GI in this system without a referral from the internist. And she will not prescribe any treatment for this condition.

This is an example of the long process of getting treatment for this. #1 set up an appointment with the internist, which takes about two weeks to get in. #2 Do unnecessary bloodwork unrelated to this condition and set up a follow up appointment a month later. #3 Set up an appointment with the surgeon at this facility, who isn't going to do surgery. I am seeing him only so he can give a second opinion to the internist (which makes no sense). It will take another month to get an appointment with him. #4 Set up another follow up appointment with the internist, which will take another month. #5 If I'm lucky, she will give me a referral to see a GI, and it will probably take me another 2 months to get an appointment with him. #6 Then they will probably make me do another colonoscopy, and I will have to set up another appointment for that, which could possibly take another month. Isn't this insanely inefficient?

I had a similar situation when I was diagnosed. I didn't have insurance, but I did have a diagnosis of proctitis making it a little easier to get treatment. Did you have a full array of stool tests, ruling out pathogenic causes? Have you had follow up stool tests since? How could there only be one biopsy from the colonoscopy? If it was active and "possible", you would think the GI would have taken more samples. Can you reach out for the report from that scope?

Okay, so what I did was the following; I paid out of pocket to get a relationship with a GI. It was $350 for the initial appointment (that's high and you may be able to work out a cash price with the right doctor). She prescribed medication that got me out of my flare up. The problem was that I desperately needed a scope to see what was going on. I couldn't afford a scope, i couldn't even afford the initial $350 to see this woman. Thankfully, she was nice, got me sample meds to hold me over until I figured out how to afford meds, and she knew about a clinical trial. Guess what the trial included?? You guessed it, a scope to confirm the diagnosis. That was the scope that diagnosed me with UC. I looked into programs and I was able to get all my meds for free directly from the manufacturers. It took a while to get into that program. I had to submit tax forms and a note from my doctor. In the meantime, I got by on samples, and ordering generics from Canada. Because of the ACA a lot of manufacturers don't offer the same incentives unfortunately, but i am sure some do.

Were you able to get the report? There is no one around your area? Do you live somewhere really rural? How far are you from a university hospital with an IBD center? There has to be some hope! Have you looked into clinical trials? I am not sure you would be a candidate since your diagnosis is somewhat questionable...