I was actually a little excited at the thought of this new doctor. He had come highly recommended due to his specialty being Crohn's and Colitis. He has also been at Vanderbilt and I felt like would be very up to date on the newest Crohn's stuff.
After getting back into the patient room I waited over an hour. So by the time I actually saw the doctor I was an hour and a half past my appointment time. To say I was upset was an understatement. The only reason I was there was to establish him as my doctor. I wasn't sick. I felt stuck. I knew I needed to establish him as my doctor and that is the only reason I stayed.
When he came into the room he ran through my medical history as he understood it. He asked me to fill in the holes where ever I saw them. It was a productive conversation for him to get the full picture of my health.
But then he said something that floored me.....
"Since you are in remission and haven't had any health issues except a recent minor surgery, I think we should put you on Remicade or Humira".
I explained that I had had some joint pain and minor stomach issues that started about 4 years ago and I radically changed my diet to help my Crohn's stay in remission. The no sugar no grains way of eating had gotten rid of my joint aches and brought my stomach issues to a halt. I had been feeling great! He seemed a little surprised that sugar had helped so much. But then went right back into his talk about how the medication would keep me healthy.
If I'm really honest I would tell you that I knew this was going to happen. I knew that I would hit roadblocks when I approached a GI doctor with diet conversation.
YES YES YES I know that GI doctors deal with the GUT and diet should be a key part of EVERY conversation that a GI doctor is having. But it's not. In fact, I have had 5 GI doctors, 2 colon surgeons in the past 10 years and NEVER have I had ONE talk about diet or food modification. All of my diet modifications have come from studying and learning myself.
So here I sat. Not sick and a doctor telling me I needed to go on medications. The really hard part for me in this, is that I believe he is a good doctor. In fact I believe he could really help me if ever I was very ill. But I'm not. So the dance is to keep him in my corner without following his protocol. Doctor's don't seem to like that way of thinking. He kept spewing information about multiple options of drugs. All of the drugs he was naming were infusion type drugs or monthly shots. The infusion medication would require me to go to an infusion center every 6 weeks and receive the drug for 3 hours or and it would cost $1500-$2000 every time!!!!! Don't even get me started on the side effects.
Oh, and remember......
I'm NOT SICK!!!
Here are a few questions that I asked the doctor:
(Shhhhhhh, I already knew the answer, but I wanted to hear him say it out loud)
Q- How fast does the medicine work?
A-Very quickly! We actually give it to patients in the hospital to deal with Crohn's flare-ups.
My response- So, What if I wait and IF I have one of those types of flare-ups, you could give it then?
His answer- Well, you could do that. But you could start taking it now and avoid that flare up.
In my head- "HUH, so I could take a crazy expensive drug from now until Jesus comes back and maybe keep me from being sick and deal with all the insane side effects, or...................
I could eat a modified diet and continue on the same path that I have been on for 4 years with no medicines, and maybe one day have to take a crazy drug that works almost immediately?"
I felt like I was in the twilight zone.
Q- How long would I need to be on this drug?
A- Um, forever. Or until a newer drug came out.
(Insert fancy doctor, proud of himself voice) "And there are some great new drugs that are coming out in the next 8-10 years."
He read my face......
He comes back with- But we could just put you on it for 6 months or so and see how you feel then. And if you are feeling good and no signs of flare-ups we could just take you off.
At that point, I was so confused by the conversation that I lost all words.
I didn't understand.....
Did he say ....."If you're feeling good and no signs of a flareup we can take you off the medicine?"
BUT....BUT.....BUT..... I feel like that now??!!?!?!?!?!
He followed up his statement by saying that if I went on the medicine and then came off in 6 months I could never go on it again. Because my body would build up antibodies to it and it wouldn't be a useful drug.
So let's recap:
The doctor wants me to go on medicine to keep me in remission.
But I haven't been on any medicine for 8 years and I'm in remission already.
The doctor wants me to go on a life long drug that would cost me a fortune indefinitely.
But I could take this drug at any point IF I needed it and it would work immediately.
The doctor wants me to take a drug I currently don't need, but if I stop taking the drug when I don't need it, I can never go back on it.
I guess he could tell by the look on my face and the questions that I had asked, that I wasn't going to say yes. He followed all of it up by saying, "Why don't we get some labs and see if there is anything going on that we don't know about." He went on to say that I could go home and think about all of the options he had given and I could come back in a month and we could discuss everything.
I went down to the lab and had a bazillion vials of blood drawn. He ran all sorts of test. I had specifically asked him to run a celiac panel because that is something that has never been ruled out. After I finished my date with the vampire I left and went home.
The farther I got from the office the angrier I got.
I was mad that we didn't ever talk about the amazing way I feel because of all that I have done on the diet front.
I was mad that his biggest "fix" was to use medicine.
I was mad for the amount of courage it took to show him that I was informed, well read, and educated about my health.
I was mad that I felt nervous to do something different than mainstream medicine, even though it is MY HEALTH.
I was mad for all of the people who walk into doctors offices and don't feel like they have options other than the ones their doctor gives them.
I was mad for all of the people who feel like they just have to accept the pills, needles, injections, and don't have the option for other ways.
Where am I now.....
My labs came back.
43 tests were run on my blood. None of them came back with issues. ALL are within normal ranges.
and the Celiac test was negative.
I fully understand the way this doctor is coming at my disease. There are 3 types of medical approaches to Crohn's all depending on where you are in your disease.
- Achieving remission (the absence of symptoms)
- Maintaining remission (prevention of symptoms or flare-ups)
- Improving your quality of life
Again, I think he is a great doctor. I actually have another appointment with him for one of my kids. But it will be to diagnose her. We will think, learn, and talk long and hard about the many options for how to treat whatever they might find. But we will also be discussing diet and root cause in this appointment.
The next doctor's appointment you go to, ask lots of questions. Be prepared. You are your best advocate and you have to live with the sickness, disease, and treatments. Medicine might be the right road for you, your sickness, but it might not be. The choice is yours. Remember.... at the end of the day, you pay them for a service. You are in charge.
If you want to know more about the drugs that have been recommended to me:
Remicade
Humira
The diet I chose instead:
Specific Carbohydrate Diet
LL
PS- He sat with me for 45 minutes. That is why he was so late getting to my appointment. He has a great bedside manner and really spent time. I have to give him props for that.
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