I’m in bed trying to fall asleep. But I can’t.
Three other women are snoring nearby. One occasionally switches to groaning or talking in her sleep. Every so often someone wakes up and digs through a bag. Something plastic rustles in the corner. Someone comes in the room around 3am and turns on the light. Briefly, but long enough to wake me up.
The noise is constant, and despite my exhaustion, sleep does not come easy.
It could be just about any hostel in the world. Except that it’s not.
I’m not traveling in some interesting new country. Instead, I’m spending the first night of my second hospital stay in one week in a room with four beds, and the sleeping pill I secured from a nurse isn’t strong enough to compete with the noises coming from the three old ladies I’m sharing the room with. This was not how my Friday night was supposed to go.
Hospital instead of Christmas markets
While many of you were enjoying your Thanksgiving dinners, I was sitting on my couch watching Friends DVDs in between trips to the bathroom. I hadn’t really eaten anything all day, and by late afternoon, I couldn’t even keep water down.
The next day Andy and I were supposed to go on an overnight Christmas market trip to a couple of cities south of Berlin. But we had to cancel, and after only being sick for a few days, I had Andy bring me to my doctor. My colitis flare ups don’t normally come on that quickly, and they don’t normally involve vomiting unless there’s something else going on. I wasn’t going to let this get as bad as it did last summer. I wanted to tackle it head on.
My doctor agreed that it didn’t seem like a flare up, but he was concerned with my dehydration and the fact that I was having trouble just drinking water. He suggested I admit myself into the hospital, so off I went.
They hooked me up to an IV, which almost immediately made me feel better. After a few days of that and a few tests, they concluded that I had some kind of infection but no flare up, and they let me go home after four nights.
Here we go again
Within a day, I started feeling really bad again, and I couldn’t keep any food down. At my follow up appointment with my doctor, he was reluctant to make me go back to the hospital since they said I didn’t have a flare up. He sent me home with some electrolyte mineral stuff to put in water and drink, and told me to come back in two days. But instead, two days later, we told him I was going back to the hospital. Things were getting worse, and I knew when to accept defeat.
Somehow between Monday and about Wednesday, my colitis kicked into high gear. This time they decided in the ER that I was having a flare up. They started me on the wonderful yet horribly evil steroids, so even though I hate being on those drugs, I was a little relieved to know I’d start improving quickly.
Nutrition and autoimmune disease
A little over two years ago, I began exploring my health from a different perspective. I read up on nutrition as it relates to digestive and autoimmune diseases. I learned about various foods that can be difficult to digest, and I learned about the Paleo diet. I spent a full 30 days doing a strict Paleo diet: no gluten, dairy, sugar, non-gluten grains, legumes, white potatoes, alcohol, or non-approved oils.
This was all as a result of my doctor in Freiburg telling me that I was starting to have flare ups a little too often, and we’d probably have to start thinking about putting me on different medication soon. The next level up from what I take now are all some form of immune-suppressant therapy, and that sounds scary to me. So I started looking for other ways of dealing with my disease.
It was so uplifting and encouraging to read about so many people who made drastic improvements to their health, some people who even have the same disease as me, by changing their diet. Not easy changes mind you, but still. If I could get myself to eat that way, maybe I could also reign in my colitis and not have to take the scary medicine.
Realities of fighting disease with food
It turns out sticking to a strict Paleo diet is much harder than even I thought it would be. It’s nearly impossible to eat out without eating something that isn’t Paleo. I missed alcohol. I missed chocolate. I missed Thai food full of rice or rice noodles and peanuts. I missed pizza. (Ok I still miss pizza. Lactose intolerance sucks.)
And let’s be real. Most of the people writing about the miracles of Paleo are people who decided to make these dietary changes within months or a year or two of developing digestive problems. They suffered through poking and prodding for months or longer while some doctor tried to figure out what was wrong with them.
When they were given some vague diagnosis of ulcerative colitis or Crohn’s disease or some other similar ailment, they said no. No to the drugs, no to the idea that food has nothing to do with their digestive symptoms. They embraced a new way of eating and it worked for them.
I wanted to be one of those people, but my story was a little different.
I was diagnosed in early 1999. I’ve been battling this disease for half my life. I had no idea diets like this existed back then. The internet was barely a thing. When my doctor told me I could eat whatever I wanted and to simply avoid anything that bothered me, I took him at his word. (Incidentally most doctors will still say this.)
But today, after nearly 18 years of having this disease, I’m starting to accept the fact that, while food and nutrition are important and definitely affect my health, they are not enough to turn back the clock. I cannot reverse 18 years of disease by cutting out half a dozen food groups. I can’t make changes to my gut faster than my gut can turn on me and attack itself on a whim.
Finally admitting something needs to change
So I need to make a change. Again. Those scary drugs have been taunting me for over two years now, and today it’s finally time to embrace them. I don’t know what I’ll be trying or even when exactly. I don’t know how it will work or if I’ll have to try a few before I find the right one. I don’t know what this will look like for me going forward. But I do know what my future could look like without them, and it’s not pretty.
Control is a big issue for me, too. I don’t like feeling like the disease controls me. I’ve made my peace with not eating gluten and dairy (I still avoid these 95% of the time) plus a list of other foods that bother me, but much beyond that it starts feeling like all my waking efforts go into staying healthy.
Not letting the disease prevent me from traveling
The Christmas market trip we had to cancel was only one night, but it’s the second trip I’ve had to cancel in a little over a year due to this disease. I also had to miss two Christmas markets in Berlin that were only going on the second weekend I was in the hospital. If I have to start canceling more trips and skipping more events, on top of all the tasty foods I can’t eat, and I’m still not healthy? Then what the hell am I doing?
I thought I could have some control by following the Paleo diet, but it just didn’t work out. I still think it’s a good, healthy way to eat for many people, and I will continue to use it as a guide for how I choose my food. But it turns out I need something else. I need to control this with stronger drugs, too.
The disease could give me cancer. The drugs could give me cancer. But you know, I could get cancer from a million other things too, or from seemingly nothing at all. Or I could get hit by a bus tomorrow. So for now I have to make the best decision with the information I have.
For now I’m concentrating on recovering from this latest round of illness. I’ll be on steroids until at least mid January. After that, it’s kind of a wait and see situation. My doctor wants to see how I do at that point, and we’ll keep a close eye on my disease as winter turns to spring. With any new drugs come new side effects, so he doesn’t want to start me on them any earlier than necessary.
Last summer after I spent two weeks in the hospital, I was really freaked out. It had an almost traumatic effect on me, and for weeks afterwards, I kept having little panic attacks about what was happening to my body and the fact that it got so bad I needed blood transfusions.
This time was different. I wasn’t as sick, I was only bleeding one day instead of every day for a week, and I recovered much faster. It was enough for me to embrace the idea of stronger medicine. Medicine I wasn’t mentally ready for over the past few years.
But I’m ready for it now.
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