Health Problems Derail My Travel Plans Again
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.
You might also enjoy:
- Blood Transfusions and Hospital Stays: How I Spent My Summer Vacation
- Berlin International Restaurant Project: Russia, Sudan, Vietnam
- How Much We Spent Living in Berlin for Three Months
- On Living a Non-Traditional Life
December 13, 2016 @ 5:23 AM
Oh Ali, I’m so sorry to hear this. Good job on getting on top of it as quickly as possible – you likely saved yourself weeks of being very sick. Steroids are the most crazy wonder drug that can be so bad for you at the same time – but oh, they do make you feel better quickly. I know I’ve told you before, but I started immunosuppressive therapy (azathioprine, or Immuran) about 10 years ago and it has helped me enormously with absolutely no side effects – in fact the only side effect was that my psoriasis also cleared up! I hope you find one quickly that you can tolerate well and that will help you in the long term. I’ll be thinking of you.
December 14, 2016 @ 11:13 AM
Thanks Gillian! It’s actually really encouraging to know that you’ve taken some of the scary drugs without any negative side effects. I think I actually took something in the azathioprine family (6MP) almost 10 years ago, and it gave me lots of pain and I couldn’t eat, so my doctor doesn’t want to try that again. But he gave me a list of ones we’re considering, unfortunately all involving either a shot or an infusion, and I’ll read up on them and try to wrap my head around it.
December 13, 2016 @ 7:32 AM
<3 So sorry you have to deal with this. I hope the meds turn out to be a god-send.
December 14, 2016 @ 11:13 AM
Thanks! Already feeling so much better, and we’ll see how things go in the coming months before actually starting something new.
December 13, 2016 @ 1:30 PM
Much love to you Ali. I’m so sorry to hear that you’re going through all this. It’s never a good time but things going wrong at Christmas always seem to hit that much harder because of everyone’s ‘happiness’ on social media etc.
Sending you all the positive energy and thoughts I have to spare for a speedy recovery that gets you back on the road xx
December 14, 2016 @ 11:15 AM
Thanks Toni! You’re right, never a good time. Last year I felt like I lost my whole summer to being sick, and this year I feel like I’m missing out on the Christmas market season because of it. But luckily I am recovering really quickly this time around, which I’m so grateful for.
January 18, 2017 @ 11:30 PM
Oh I can relate to this as I have Crohn’s and have had since 2003 (originally diagnosed as colitis). I’ve had my fair share of issues (but not hospitalized.
Anyway, here are a few things that have worked for me
1. Switched from artificial sweeteners in coffee to honey
2. Vit D*
3. More protein*
4. Avoid alcohol, esp red wine. Hard alcohol in small doses seems to be okay for me. But, I generally avoid it as sometime effects can last for 2-3 days and it’s not worth it.
* #2 and #3 I learned serendipitously. I feel down and broke 3 bones in my foot. Had to stay w/ parents for 6 weeks…my building has the world’s longest hallways…never realized that until I hurt my foot. Anyway, I took calcium/Vit D Supplements (Citracal 1200 slow release) and my mom made lots of protein and I had less starch. All of this helped my foot heal faster and the finished off the recovery (as I had a major flare up a few months before falling.
So, in the end, this was lucky as I made these 2 discoveries. I then did research online abt Vit D and found it helped w/ my problem and a whole bunch of others. I love pasta, so I switched to whole wheat pasta which has protein and is healthier. It actually works very well with strong sauces like pesto (and even penne vodka).
Hope that helps.
Glad you’re okay now. it’s the worse when you’re not feeling well and you can’t sleep. I had that for the first week or two after breaking my foot…if I moved while I slept, it hurt and woke me up. And, even worse when there are others around you.
January 22, 2017 @ 3:31 AM
Debbie, I’m sorry you can relate! Crohn’s and colitis are awful! I’ve done tons of reading and experimenting with nutrition and diet over the past few years, and I even tried to follow the Paleo diet for awhile. I still kind of use it as a guide, but I found it to be too restrictive. For me, I do much better when I don’t eat gluten, dairy, beans, or eggs. I also limit a few other things, like corn and corn products, alcohol, and spicy food. I never really liked artificial sweeteners, but I try to limit my processed sugar intake…though not too successfully! I’ve started taking vitamin D because Berlin is so far north that I was starting to feel depressed in the winter, though I haven’t noticed any difference with my colitis symptoms. Also, I read about how wonderful turmeric can be for digestive health, and I started taking turmeric pills (I tried adding it to food instead of the pills, but I don’t like everything turning yellow, and the amounts were just easier to deal with in pill form) and I’ve noticed a big difference from that over the past year.
It’s a struggle to deal with this disease, and I hate that it’s on my mind so much more than it was several years ago. I miss the days when I could just take my pills, eat whatever I wanted, and not have any problems for years at a time. Not so anymore. And I really wish I could avoid having to take stronger drugs for it, but I’d be surprised if my doctor doesn’t have me try them within a year.
Anyway, thanks for sharing your experiences and what’s helped you. It’s amazing to me how vastly different we can all be with the foods that bother us and the ones that don’t.