Quite a bit has happened since my last update. Last time I posted, I was about to go to Newfoundland and my symptoms appeared to be calming down. I did indeed go to Newfoundland, which was incredible (pictures below!), but unfortunately, my symptoms began to revert back to how they were before the trip even started and got a little bit worse while on the trip. So much for all the optimism I expressed in my last update.
I attribute my increased symptoms to stress, and I attribute my increased stress to two things: the symptoms I already had and all of my food/supplement/herb needs for the trip. I’m normally not one who worries about travel; two winters ago, I couch surfed in Montreal and Ottawa, and last spring I flew to Egypt to visit my sister. Both times, I packed light and had no reservations. This time, I had a plastic container of all of my supplements and cooking equipment, a cooler with some cooked food, canisters with dry millet, oatmeal, and quinoa, the need to stay focused on all of this at all times, and uncertainty about my symptoms. There was a lot of planning involved to make sure I would be able to cook all of my food along the way and have all of my herbs and supplements in a convenient place during car rides, ferry rides, and nights at various accommodations.
As my symptoms got worse on the trip (including more frequent bathrooms trips and blood in the stool), I began to feel as anemic as I’m sure I was, so in addition to feeling colon-sick, I felt exhausted. I was still able to enjoy myself, but not 100%. I had to forgo a hike and started napping as much as I could.
My cousin’s wedding was on day 7 of the 11-day trip, and it was the day after that that we headed home. This same day, I began to feel a bit better. I think that knowing I was on the home stretch was the best medicine I could have had at the time. Once home, I would say that I felt about the same as when I left, with maybe a bit more inflammation and discouragement.
The day after arriving home, a Thursday, I saw my herbalist to have my herbs adjusted again (there are apparently infinity herbs in his supply room!). This time, I got a raw herb that I made tea with every day by simmering for 20 minutes. It should have helped with the bleeding within a week but unfortunately did not. That weekend, I emailed my gastroenterologist to see if he would order bloodwork for me; it had been months since we did bloodwork, and because of my symptoms, I wanted to see just how bad things looked. That Monday I got my blood taken, and the day after that my doctor called to say that my iron was “very, very, very low” and my CRP was high. I expected as much, but the iron was so low that he wanted to set me up to start getting iron infusions. Because there is no practitioner I trust more than my herbalist, I ran this by him and he was in support. He also said that when the anemia is serious, the bleeding can be more difficult to treat. That was all I needed to hear, plus I was happy to not be getting a blood transfusion; I don’t know where they get the iron from, but it’s not extracted from someone’s body!
That Thursday, my mom brought me to the Brigham for my first infusion. I figured that with my luck, I would have an allergic reaction to the IV iron or it would at least irritate my veins and we would need to infuse really slowly, but the infusion was relatively quick and absolutely reaction-free. That was a relief! (They still had to dig for a vein, but that is nothing new.)
Unlike a blood transfusion, iron doesn’t supply energy immediately; it takes time and several infusions for there to be a difference. By the time I got the infusion, I was feeling pretty weak and could feel my heart beating faster than usual. I was also pale, as my mother pointed out. So I didn’t expect all this to improve right away, but I was glad I was on track to get there.
The day after the infusion, I saw a doctor who specializes in functional medicine. We’ll call him A. Several months ago, my herbalist recommended that I see A, and it took that long to get an appointment with him! Apparently, others know about how good he is. Through functional medicine, his aim is to find the underlying cause of my disease, and to address the mind, body, and spirit to heal.
It was a consultation appointment, so I told him my story, which involved a lot of crying, and he offered some possible treatment routes and had me take home two collection kits that will allow us to learn more about my constitution, per se. During my appointment with him, it was like someone released the dam behind my eyes. I cried so much, at first because it was hard to talk about everything I’ve been through, and then because he was suggesting all of these tests and possible treatments, which made me feel overwhelmed and wondering what I was getting into. The tests (the ones I got the kits for) are mostly covered by my insurance, but we’ll end up paying $300-$400 for them out of pocket. Compared to what we regularly pay for my herbs, supplements, and food, this isn’t a big deal. And it’s nothing compared to when I used to do acupuncture weekly with another acupuncturist, or when I saw a chiropractor twice a week for months and paid for treatments and supplements that I was rather skeptical of, none of which was covered by insurance. Plus, it was my herbalist who had recommended this doctor, so I knew everything he suggested would be worth it. Despite all of these reasons to not blink at the cost of the tests, I couldn’t help but compare this to all of the money we’ve put toward my health in the past year that didn’t make a difference. In particular, I thought of the nutritionist I had seen who had me send in a stool sample to a lab that would analyze it for parasites, bacteria, yeast, and fungi. At that time, we were all about blaming my colitis on parasites, but all the lab report said regarding parasites was that yes, I had them. What type, how bad? Nothing. And the rest of the report was not entirely helpful either. And we paid hundreds of dollars for this stupid test.
A calmed my worries, promising to only put my money towards tests that would lead toward therapies rather than just diagnoses (something like that – I forget how he worded it). In other words, he has specific reasons for each test he chose for me.
Everything I discussed with A I’ll save for another post. (This one is already long enough!)
Back in time to the morning of the day I saw A. Appointment was at 11:30 an hour from my house. I normally wake up early needing to use the bathroom so I didn’t set my alarm. I woke up at 6 to use the bathroom then went back to bed, assuming I’d wake up in another couple hours. Nope; woke up at 10:15. Bounced out of bed, copied down directions to A’s office, printed out things I wanted to share with him, grabbed my binder with all my medical information, packed a lunch, took a probiotic, made oatmeal in record time (to eat while driving), and ran out to the car. I actually managed to do all this in 20 minutes, so I was only going to be a few minutes late. But then I missed the exit I needed to take, for no reason at all; I was waiting for it and was in the right lane but somehow I spaced as I passed it. I got off at the next exit, which actually put me on the road I needed to be on, but in the wrong direction, and there was a meridian with no break for a u-turn for forever. I finally turned around where I should not have turned around and made it to the office, where I waited for 20 minutes to see the doc. Typical.
After my appointment with A, I drove the 15 minutes to my herbalist, and he sat down with me to go over how I was feeling. We had a revelation; I haven’t been drinking vegetable broth! This was something he had me make when I first started seeing him last December, but this spring, when I was feeling a lot better, we started working actual vegetables into my diet. At this point, I had stopped making broth, but then when I needed to stop eating veggies when my symptoms started acting up again, I never added broth back in; I really had just forgotten about it. I don’t take a multivitamin, so I’ve certainly been missing out on the vitamins and minerals that are necessary for whole-body health. Nutrients alone won’t save my colon, but they are certainly a huge factor. He had me try a serving of All Day Energy Greens while I was in his office, and he sent me home with some more, to use until I could make broth. Just sipping it, I felt better. He asked me to try it a couple more times that day and call him in the morning to let him know how I was doing. Sure enough, I felt better the next morning and there was less blood! Maybe I was headed this way anyways, maybe the sudden boost in nutrition made a difference, or maybe both. The next day, I made vegetable broth that I’ve started to drink.
He also gave me a new mix of powdered herbs. He said that the past bunch of times he’s adjusted my herbs, he had made small changes but the mix was based on a certain combination or concept. This time, he said that the mix was very different. It definitely tastes better!
Even before seeing the functional doctor and my herbalist, I had started to have bigger chunks of sleep, but seemed to have more blood; there was a change, but I didn’t know if it was for better or for worse. Then in one day, I started adding in more nutrition and I cried my heart out at A’s office. The next day, there was less blood and I felt much better. Then I started the new herbal mixture. And I had an iron infusion the day before my appointment with A. So there have been many changes at once! I feel like the added nutrition had a very positive and immediate impact, and we have yet to find out about the new herbs. Also, I think that my meltdown was a good release of emotions, which supported my healing. And although I shouldn’t be noticing a difference from the iron infusion yet, I have more energy. Like my improvement in symptoms, I’m not sure which intervention supported my increase in energy, if it was the iron or the nutrition or the release of emotions.
What’s next? We shall see. Hopefully, I will continue to feel better and see less symptoms. Hopefully, my next post will be shorter.
And here are some pictures of Newfoundland: