November 19th I was supposed to be on my way to feeling better. That's the day John and I were heading to Vancouver, B.C. to receive my special shipment of whipworm ova, the parasite that I am planning to host in an effort to make my u.c. better.
Although I can't help but be a little bit nervous about this adventure, I was getting past the jitters and moving into giddy optimism. I was starting to think about how I will wean myself off my meds, wondering if it might be possible to take up "serious" running again, and getting ready to jump into the job hunting game without worrying whether I can find a u.c.-friendly workplace. Or even whether I can get through a job interview without running to the restroom!
That's when I got a call from our "worm wrangler"at Autoimmune Therapies, the company I am working with on this treatment. Sadly, he was calling to let me know we had to cancel our Vancouver rendez-vous. Seems he's been having some issues with recent shipments to Canada, and he didn't think it would be smart to travel there when there's a chance I wouldn't get what I came for.
To say I was disappointed would be a huge understatement. Initially, I felt like someone had socked me in the stomach. I was at Target right after taking the call, wandering the aisles, completely unable to focus on my list, and finally had to just leave because I felt nauseous. I was jittery, with what felt like an adrenaline hangover, for the rest of the evening. Guess that reaction tells me I was more than just a little excited about my treatment!
But I'm not totally out of luck. The recommendation is that I just travel to Europe instead and pick up the little fellas there. So John and I are now in the throes of planning a trip in early January. Unfortunately, that means I will START down the path of feeling better almost 2 months later than I had planned. Considering it can take 10 weeks for this treatment to start working, that's no small difference. Plus, travel is pretty hard on my system, and it gets even worse when you talk about trans-Atlantic travel, what with the jet lag, and multiple flights, and layovers, and such. So I'm not looking forward to what I assume will be a pretty rough road. Or to European pay toilets.
Meantime, my symptoms are all over the map. I seem to bleeding quite a bit right now, suffering from a fair amount of gas whenever I eat, waking up to very painful cramps each morning, and generally feeling like I've got a bundle of barbed wire stuck in my abdomen. However, I'm able to exercise pretty regularly, and I'm trying to eat less overall, and less sugar and refined carbs in particular because these foods are thought to contribute to the inflammation that rules this disease. But let's get real: it's the holidays, and I love to eat, not to mention bake! Well, we'll just have to see what happens there....
Right now, I'm just focusing on keeping a good thought and being ready to feel better soon. Just not as soon as I hoped.
Monday, November 29, 2010
Thursday, November 11, 2010
The Gift of Time
I've been unemployed for a few weeks now and everyone I talk to wants to know what it's like. It's pretty much like what you'd think: suddenly I am caught up on my sleep, all those loose ends and projects around the house are getting done, my dog is getting his walks more regularly, and I'm even getting to the gym more often.
All of this I looked forward to during the count down between when I gave notice and actually walked out the door on that last day. But what I didn't expect was the effect of all this time on my hands. Slowly over the last few weeks, as I racked up more hours of sleep, as I shed my worries about my job, as I chipped away at all the other priorities in my life, something magical has happened: my UC symptoms have gotten just a wee bit better.
Previously, it seemed like I was walking around with a clenched fist in my lower abdomen. It always just felt like a muscle that simply would not relax. I just noticed this morning that it's been a few days since I've had that feeling. Before, I was barely able to walk my dog 6 blocks without fear of having to dash back home to get to a bathroom. In fact, in the two weeks before I left my job, I think I had three accidents. But two days ago, I did 4 miles on the treadmill at the gym and didn't have to break to use the bathroom once. Just a month or so ago, I was usually awakened at 5:30 or 6:00 a.m. by an urgent need to get to the bathroom. Now, I usually wake that early because my body has had enough sleep and is ready to get up and start another day. (OK, I still usually have to get to the bathroom within a few minutes after waking, but at least I'm not racing to the toilet before my eyes are even open yet.)
I'm not saying that shedding my job was the silver bullet I've been praying for in terms of ending my struggle with UC. But it has really been an eye-opener to realize just how profound a role my job stress plays in the disease process. In the coming weeks, I look forward to more and more benefit from my unemployed lifestyle.
So now the trick becomes learning how to implement some of my easy-going unemployed ways as I get ready to dip my toes back into the employment pool. I can't go without a job forever (and wouldn't want to even if I could) but in just a few weeks without a job, I've already learned how deeply vital it is that I manage the other priorities in my life.
There's lessons here for people who have healthy bodies too. From time to time, we are all guilty of burning the candle at both ends. But I want you to know how powerful it is to make sure you're getting enough sleep, to pay attention to whatever it is you WANT to pay attention to, to get some exercise, etc. Sure, not everyone has the luxury of quitting their job, but if you can make some time in your day-to-day, or even plan 2 or 3 days of vacation so you can pretend you're unemployed for a few days, I guarantee your health and well-being will benefit tenfold.
For my part, I'm going to just enjoy the windfall of improved health as I start thinking about my next professional challenge. What a gift!
All of this I looked forward to during the count down between when I gave notice and actually walked out the door on that last day. But what I didn't expect was the effect of all this time on my hands. Slowly over the last few weeks, as I racked up more hours of sleep, as I shed my worries about my job, as I chipped away at all the other priorities in my life, something magical has happened: my UC symptoms have gotten just a wee bit better.
Previously, it seemed like I was walking around with a clenched fist in my lower abdomen. It always just felt like a muscle that simply would not relax. I just noticed this morning that it's been a few days since I've had that feeling. Before, I was barely able to walk my dog 6 blocks without fear of having to dash back home to get to a bathroom. In fact, in the two weeks before I left my job, I think I had three accidents. But two days ago, I did 4 miles on the treadmill at the gym and didn't have to break to use the bathroom once. Just a month or so ago, I was usually awakened at 5:30 or 6:00 a.m. by an urgent need to get to the bathroom. Now, I usually wake that early because my body has had enough sleep and is ready to get up and start another day. (OK, I still usually have to get to the bathroom within a few minutes after waking, but at least I'm not racing to the toilet before my eyes are even open yet.)
I'm not saying that shedding my job was the silver bullet I've been praying for in terms of ending my struggle with UC. But it has really been an eye-opener to realize just how profound a role my job stress plays in the disease process. In the coming weeks, I look forward to more and more benefit from my unemployed lifestyle.
So now the trick becomes learning how to implement some of my easy-going unemployed ways as I get ready to dip my toes back into the employment pool. I can't go without a job forever (and wouldn't want to even if I could) but in just a few weeks without a job, I've already learned how deeply vital it is that I manage the other priorities in my life.
There's lessons here for people who have healthy bodies too. From time to time, we are all guilty of burning the candle at both ends. But I want you to know how powerful it is to make sure you're getting enough sleep, to pay attention to whatever it is you WANT to pay attention to, to get some exercise, etc. Sure, not everyone has the luxury of quitting their job, but if you can make some time in your day-to-day, or even plan 2 or 3 days of vacation so you can pretend you're unemployed for a few days, I guarantee your health and well-being will benefit tenfold.
For my part, I'm going to just enjoy the windfall of improved health as I start thinking about my next professional challenge. What a gift!
Thursday, November 4, 2010
Toss the bums out!
I had big plans for today. I was going to get up early, take the dog for a good long walk, run some errands, go to yoga class, and then work on some "getting organized" projects back at the house this afternoon. It looked like a pretty good plan, until....
I woke up at 6:15 this morning with a very grumbly tummy. By 6:30, it was clear my busy day was going to be at least delayed. By 7:00 I was so firmly attached to the toilet that I couldn't even manage a long enough break to get a drink of water.
Now it's 8:20 and I am at least getting enough time to sit at the computer and type out a few things before I have to jump up and run back to the bathroom. I'm bummed that it looks like I need to scale back my plans for the day, but I guess the silver lining is that at least I don't have to be at work today, worrying whether I can get to the bathroom quickly enough without making too much of a scene.
It's been a rocky week, lots of bad symptoms since last Friday. Which is especially discouraging since I had a Remicade infusion just last Wednesday. Is this super-expensive, time-consuming, and somewhat risky treatment working for me at all anymore? Seems like my fancy little mouse protein-derived TNF-alpha inhibitor is asleep at the switch. Yo--Can I get a little support here, Mr. Remicade?
In a nod to the election season, it's time to throw the bums out! Remicade is not listening to its constituents anymore. It's too beholden to "special interests" like the pharmaceutical companies, the clinic where I get it, the insurance companies....I need a fresh new voice, a non-career representative to calm the storm in my gut. Bring on the worms, I say!
I woke up at 6:15 this morning with a very grumbly tummy. By 6:30, it was clear my busy day was going to be at least delayed. By 7:00 I was so firmly attached to the toilet that I couldn't even manage a long enough break to get a drink of water.
Now it's 8:20 and I am at least getting enough time to sit at the computer and type out a few things before I have to jump up and run back to the bathroom. I'm bummed that it looks like I need to scale back my plans for the day, but I guess the silver lining is that at least I don't have to be at work today, worrying whether I can get to the bathroom quickly enough without making too much of a scene.
It's been a rocky week, lots of bad symptoms since last Friday. Which is especially discouraging since I had a Remicade infusion just last Wednesday. Is this super-expensive, time-consuming, and somewhat risky treatment working for me at all anymore? Seems like my fancy little mouse protein-derived TNF-alpha inhibitor is asleep at the switch. Yo--Can I get a little support here, Mr. Remicade?
In a nod to the election season, it's time to throw the bums out! Remicade is not listening to its constituents anymore. It's too beholden to "special interests" like the pharmaceutical companies, the clinic where I get it, the insurance companies....I need a fresh new voice, a non-career representative to calm the storm in my gut. Bring on the worms, I say!
Wednesday, November 3, 2010
You're going to do WHAT?!
In just a few weeks, I will embark on a trip to Vancouver, British Columbia, to take the next step in my treatment for ulcerative colitis. I am going to acquire a whipworm parasite. Also known as "helminthic therapy," parasite infestation is admittedly a little "out there" in terms of medical treatments, but I'm rarin' to give it try for two reasons: 1. The more I've learned about it, the more I realize that the risks and potential benefits are not much different than many of the other treatments I've tried, and 2. I'm at the end of my rope. I need a game-changer, there are not any other options, and I am seriously demoralized by the ongoing battle of daily diarrhea, gas, rectal bleeding, severe cramping, mega-medications, et al.
I spoke with my gastroenterologist about my plans and he was aghast. We really talked around the issue, but he just kept coming back to the same conclusion: "But you'll have a PARASITE!" And he's not the only one who feels that way...pretty much everyone I tell about this treatment falls somewhere on the spectrum between polite smiling and nodding to outright incredulity at the very idea.
But I think the theory for this treatment is fairly solid: for millenia, humans evolved right alongside the whipworm, and these little fellas lived in our guts and helped regulate our immune systems. I've heard one doctor say they give out-of-whack immune systems like mine something appropriate to focus on, rather than launching the full-blown attack on completely imaginary invaders that's going on right now. (Of course, this is totally simplified. For a better description, maybe you'd like to visit the Autoimmune Therapies website.)
In a corollary to what is called "the hygiene hypothesis," as Western society has become more industrialized, helminths are much less common here, while the incidence of autoimmune disorders continues to rise at an alarming rate. In less developed countries, where helminthic parasites are still common, diseases such as lupus, ulcerative colitis, arthritis are much less common, even unheard-of in some areas. Yet, in countries that are following our lead into industrialization, these diseases (along with a host of other problems, to be sure) are becoming more and more common.
This treatment has been studied quite a bit, most famously by Dr. Joel Weinstock at Tufts University, and has been successfully used to treat asthma, MS, lupus, and yes, ulcerative colitis and Crohn's disease. Should something go wrong or I change my mind about the treatment, I can eradicate this parasite with a single dose of a powerful antibiotic. An infestation of whipworm is considered such a mild condition that the CDC recommends AGAINST treatment for people who contract it the old-fashioned way. (That is, accidentally!)
But what tipped the scales in my decision to take this action is reviewing all times I've already been at this precipice of deciding about a new treatment. When I was first diagnosed, I was put on heavy doses of prednisone, a steroid that we know is pure evil in terms of what it does to you long-term. These days, I am on a low dose, but still fear the consequences. What about azathorprine, which has a fairly long track record in treating u.c., but is linked to increased rates of lymphoma, especially when combined with other drugs? I take it every day. Then there's Remicade, a treatment I resisted for months because nobody knows what it does long-term, except that it probably raises your risk of contracting certain kinds of leukemia. Yet, in the never-ending quest to get better, I started on a regimen of one infusion every 8 weeks several years ago and am now up to one infusion, at the highest allowable dose, every 5 weeks. All this, and what I get in return is feeling like my disease "moderate to severe" rather than "severe."
So here's what it comes down to. On the "pro" side, we have the potential for feeling better, taking fewer medications, spending less money on treatments, spending less time coping with symptoms, and generally regaining a sense of control. On the "con" side, I will have a parasite. A parasite that can be eradicated with a single dose of antibiotics, if I change my mind.
What would you do if you were in my shoes? I say, "Sign me up!"
I spoke with my gastroenterologist about my plans and he was aghast. We really talked around the issue, but he just kept coming back to the same conclusion: "But you'll have a PARASITE!" And he's not the only one who feels that way...pretty much everyone I tell about this treatment falls somewhere on the spectrum between polite smiling and nodding to outright incredulity at the very idea.
But I think the theory for this treatment is fairly solid: for millenia, humans evolved right alongside the whipworm, and these little fellas lived in our guts and helped regulate our immune systems. I've heard one doctor say they give out-of-whack immune systems like mine something appropriate to focus on, rather than launching the full-blown attack on completely imaginary invaders that's going on right now. (Of course, this is totally simplified. For a better description, maybe you'd like to visit the Autoimmune Therapies website.)
In a corollary to what is called "the hygiene hypothesis," as Western society has become more industrialized, helminths are much less common here, while the incidence of autoimmune disorders continues to rise at an alarming rate. In less developed countries, where helminthic parasites are still common, diseases such as lupus, ulcerative colitis, arthritis are much less common, even unheard-of in some areas. Yet, in countries that are following our lead into industrialization, these diseases (along with a host of other problems, to be sure) are becoming more and more common.
This treatment has been studied quite a bit, most famously by Dr. Joel Weinstock at Tufts University, and has been successfully used to treat asthma, MS, lupus, and yes, ulcerative colitis and Crohn's disease. Should something go wrong or I change my mind about the treatment, I can eradicate this parasite with a single dose of a powerful antibiotic. An infestation of whipworm is considered such a mild condition that the CDC recommends AGAINST treatment for people who contract it the old-fashioned way. (That is, accidentally!)
But what tipped the scales in my decision to take this action is reviewing all times I've already been at this precipice of deciding about a new treatment. When I was first diagnosed, I was put on heavy doses of prednisone, a steroid that we know is pure evil in terms of what it does to you long-term. These days, I am on a low dose, but still fear the consequences. What about azathorprine, which has a fairly long track record in treating u.c., but is linked to increased rates of lymphoma, especially when combined with other drugs? I take it every day. Then there's Remicade, a treatment I resisted for months because nobody knows what it does long-term, except that it probably raises your risk of contracting certain kinds of leukemia. Yet, in the never-ending quest to get better, I started on a regimen of one infusion every 8 weeks several years ago and am now up to one infusion, at the highest allowable dose, every 5 weeks. All this, and what I get in return is feeling like my disease "moderate to severe" rather than "severe."
So here's what it comes down to. On the "pro" side, we have the potential for feeling better, taking fewer medications, spending less money on treatments, spending less time coping with symptoms, and generally regaining a sense of control. On the "con" side, I will have a parasite. A parasite that can be eradicated with a single dose of antibiotics, if I change my mind.
What would you do if you were in my shoes? I say, "Sign me up!"
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