Making Tough Treatment Decisions
It would be nice if there was one pill that would simply solve ulcerative colitis or Crohn's disease – but so far, there isn't. Instead, there are a plethora of treatment options that a patient can embark upon, from natural remedies to diet to medications.
While a doctor or naturopath can guide a patient as they make the decision of what to do, it is often the patient's choice ultimately. These difficult decisions can be empowering, but they can also be stressful and full of uncertainty.
After my ulcerative colitis diagnosis
In my personal journey, I have tried out some natural/homeopathic remedies, and some medications. When I was first diagnosed with ulcerative colitis in 2015, I was working with an allopathic doctor to see what my options were. He put me on mesalamine, and I agreed to the plan since I knew very little about ulcerative colitis or how to treat it.
My mother was also involved, though, since I was just a college student. And she tried to figure out what diets would work for me and what supplements I should take.
Will changing my diet help?
Over time, I learned that the dietary changes that my mother recommended simply weren't making a difference for my body. The turmeric and ghee combination I was taking wasn't worth the effort of waking up early every day to prepare it. I had given up dairy for 6 months, but as soon as I got back on it, I felt the same. I had also avoided gluten for a period of time, but similarly, it didn't change my symptoms.
I decided to just stick with allopathic treatment for the time being. But I did stay away from trigger foods like seeds, coffee, and alcohol.
Which treatment will be fastest?
That decision was easy enough to make since I was choosing what to do based on how my body reacted to the dietary and supplemental changes. It was much more complicated when I flared again, because now my doctors gave me a choice of medications. I was told I could either go on 6-mercaptopurine (6-MP) or a biologic.
I asked only one question: What will work the fastest?
My doctor suggested 6-MP, so I went with that because I was in the middle of a big life transition and felt that I didn't have time to get sick. Unfortunately, the 6-MP did not suit my body at all, and I ended up in the hospital twice in 2 months with horrible white blood cell counts. It turned out I had a rare genetic situation that didn’t allow me to process 6-MP. It was so rare, my doctor wouldn't have even thought to test for it.
Remission, flare, and my options
The only good news after that was that I went into remission again. I was fine for a few years and was back on mesalamine. Then I flared again in 2021. At this point, my new doctor felt that biologics were the way to go. He told me I could choose between Humira and Remicade.
It was hard to make that decision because both drugs are so similar. In the end, I thought about convenience. I went with Humira because I was moving states and it would be easier to deal with the pens rather than the infusions. But the Humira didn't work out for me – and I ended up on Remicade, which did alleviate many of my symptoms.
Now, in 2023, I am faced with another decision. The Remicade isn't holding my flare completely. I have been getting it every 8 weeks, and my doctor thinks that we should try to change the dosage. He has already increased the dose, and now he thinks every 6 weeks or every 4 weeks might work. That is, unless I think the Remicade truly isn't the right choice for me. Then we could look at Stelara or Entyvio.
How I make UC treatment decisions
I am grateful my doctor wants to hear my opinion because I believe that I do know my body best. But it isn't easy weighing my options. In order to do so, I have assessed the following criteria:
- What are we seeing clinically? For example, what is the colonoscopy showing in terms of inflammation?
- How effective is the new medication or a higher dosage of the current medication supposed to be?
- How convenient is it for me to change medications? How about changing doses?
- How comfortable am I with the uncertainty of completely changing medications?
- What are the side effects of a higher dosage or different medication?
- What do people I trust –like my mother-in-law who is a nurse – think?
- What is plan B if the decision I make doesn’t work?
Thinking through these questions has led me towards going on a 6-week infusion schedule. However, if that doesn't work, I don't know if I want to go to every 4 weeks, because that sounds really inconvenient for my schedule.
I am also continuing to look into my diet and other supplements that might help, especially probiotics.
While I don't always know if I am making the right decision every time I think about my treatment plan, I have learned to ask more questions and do my research before going forward. And I always stay open to things not working out how I thought they would. Being able to stay flexible and change treatment plans as needed has allowed me to find better options for my body. And to me, that is the most important thing: feeling better, so I can live my life to its fullest.
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