Today was a blue sky, wind in my hair, favorite songs on the radio kind of day.
I saw my GI doctor and got a fabulous report.
The last time I saw him I was very sick. I was having a relapse of leukemia because I had grown resistant to my old chemotherapy. The new chemotherapy was wreaking havoc on my GI tract and it was frightening for multiple reasons.
The first of which is that I need to be able to take that chemotherapy as leukemia does not just go away. Secondly, some of the side effects of the new chemo include: intestinal hemorrhaging and colitis. I have horrific memories, physical and emotional, from earlier years when my diagnosis of chron’s was considered to be severe-profound. Thus, when my GI tract became inflamed last January as a result of the new chemo, I was so afraid that I was about to relive the profound crohns…and, in addition, I was having a leukemia relapse.
Last year was really hard.
My GI doctor has been with me through some incredibly dark times and he has watched me fight for my life. In some ways I feel like he is part of our family because he has been there at some of my biggest moments. He was my doctor during one of the hardest times of my life, when I was 29 and my world collapsed overnight at the diagnosis of a profound onset of crohns disease. He watched me fight cancer several years after the crohn’s had calmed. He knows that I am committed to wellness and that I will do whatever I can to heal.
Which is why he was saddened when he last saw me and learned that the leukemia was active again. We talked for a long time that day. Upon leaving he said that he would see me in 6 months and I would be better, because “that’s what you do” (we have a long standing joke about how I have come back to full health repeatedly after the odds were all stacked against me).
It has actually been longer than 6 months since I last saw him. It’s been almost 8 months and that is because, thank God, I did get better. And I got healthy enough to travel so we had to reschedule my 6 month check-up.
Today he was very happy and impressed to see how far I have come since I saw him last. I told him that I had literally stumbled onto the AIP (autoimmune protocol of the paleo diet) as a last resort attempt to decrease the inflammation in my GI tract so that I could take the chemotherapy. I told him that it worked and that I still follow the diet (and have added some Paleo foods back in). He said that it sounds like a healthy diet and that the reality is, more research needs to be done in re: diet and IBD.
This conversation was very different from the one we had 14 years ago, when I was told that diet and IBD are not connected. I know that GI doctors are in a difficult position because the majority of patients with crohn’s disease do need some type of maintenance medication. Crohn’s disease is not only painful but it can lead to death; it is a serious disease. There is not enough research for GI doctors to feel confident telling a patient to come off of medications and adhere to a strict diet and lifestyle. Especially when that doctor does not know if he or she can trust a patient to follow the strict diet/lifestyle.
So, I definitely understand their hesitation to endorse particular diets. However, I am very happy that we have reached a place in which we diet is up for discussion. It wasn’t when I was diagnosed. I am hopeful that more and more research will eventually lead to a cure or some type of treatment that is not as harsh as the current meds.
For now, I am on one maintenance medication and the dose got lowered today ❤
When I got home, I pulled up the blog post that I wrote 8 months ago, after my last appointment with Dr. W.
God has brought me so far in a short time. Here is the post if you would like to read it.