Thursday I had the most intense doctor apt with my GI to date. I told him that I was not taking any medications and he was upset with me. He asked me WHY? I explained: Cimzia was not working, I reached the plateau point with TNF blockers and 6-MP was making me miserable. He asked me to further explain how 6-MP was making me miserable. (In my head, I was like really? Miserable is not a good enough descriptive word for you?) With teary eyes, I explained it makes me lethargic and I hate it.
I watched him try to process what I just said. I don’t really think he felt my answer was substantial, but he accepted it. He then replied, so you aren’t ANY medication then? I said no.
He then proceeded with a physical examination of pressing on my stomach and checking the rashes on my rear. o his surprise, I had no pain- which I am sure he thought I was lying to justify my actions of taking myself off medications. But I couldn’t fake the fact my rashes had cleared up. He was impressed- no drainage, purple color, etc.
It was hen he was interested in the detail of my diet. I explained. He then stated he was concerned that I may be malnourished lacking specific vitamins and minerals. He wanted me to get blood work to check my levels. Which was okay by me because getting blood work to monitor my progress was part of the reason I was there ( my holistic doctor can not order blood work in the stat of NY). I partially worded if he thought that I was making my diet up myself rather than being under the care of a holistic doctor.
He then proceeded to inform me that I am out of options with medications as I have tried them all. He gave me three options:
1. BE a compliant patient meaning get needed blood work done. I didn’t do the last major blood test because I didn’t want to be on 6-MP. He ordered the blood work done because he wanted to put me on more of this nasty drug. To avoid that I didn’t do the blood test and avoided returning the doctors calls. He explained that without that blood work he didn’t know my baseline – so I may have been on too much and he could of modified my medication, but now we will never know. He said, I also won’t know if you are better now or worse off without the medications. Because ideally- if I got the blood work he could modify the medication which I what he would normally do.
2. Get referred to other hospitals for experimental drug trials.
3. Get new colonoscopy and endoscopy done and go from there.
I chose option 3 and also agreed to get blood work done as well. I am not opposed to blood work but I am opposed to be advised to being on more of a medication that he already explained I was on the max dose of but he said I could possibly give you more – let’s check the levels. But if I was not responding to a small amount of the medication- more is not going to help. It just intensified the side effects.
I believe that he doesn’t believe that diet alone is a viable treatment option for Cohn’s disease. I am not advising anyone to just change their diet. However, I have been through the gambit of medications and felt I was missing a piece of the puzzle. Had I felt medication were working for me, I would continue with them along with diet. But I do not feel like that at this time.
I want to prove to my doctor that diet makes a difference and hopefully show him that my inflammation has significantly decreased and there is no need for medications at this time. And that I am not fabricating how much better I feel without being on medications.
I will also state that he did say I can not force you to take medications and its not my job too. But I have a responsibility for your care and need to know what you are or aren’t taking. Then explained that I was options in regards to medications because I have tried everything at this time.
May 29th is my colonoscopy and I hope with my changes in diet that I am teaching him something new and he is open minded about treatment options in the future- to not just medications but to include diet as well!
I wish holistic medicine wasn’t so taboo! Hopefully one day in the future holistic medicine and modern medicine will collide!
Thanks for reading!