Friday, December 31, 2010

A New Year, A New Me?

I am such a sucker for New Year's.  Not for the all-night drunk-a-thon, or Dick Clark and Times Square.  I'm a sucker for wiping the slate clean, setting resolutions, sweeping out the old and welcoming the new.  I get all excited about making promises to cook healthfully, to throw out all the stuff cluttering up my house and my life, to learn new skills, to organize my music catalog.....blah, blah, blah.  We can be anyone we want, do anything we want, we simply must resolve to do it!  It's so hopeful to feel like anything is within our reach and that we are all masters of our own destinies.

So this being my own little season of hope, it's somewhat fitting that I'll undertake my helminthic journey just as a new year begins.  But I'm also keenly aware of the fact that the complete lack of control--of my bowels, of my time, of my life!--is what makes having UC so hard.

The feelings I am having right now about all this are so familiar.  I'm so hopeful that THIS TIME things are going to be different.  This time, I'm going to feel better, get stronger, and leave my meds behind.  I'm trying to remember that maybe it won't work, that maybe nothing will change for me, but the other side of that coin is that maybe EVERYTHING will change for me! 

The realistic (maybe a little optimistic) hope is that my treatment will help me quit a couple of my meds and maybe reduce the others.  That it will make mornings a little more predictable.  And that I can stop carrying around my emergency kit of clean undies and baby wipes.

But if EVERYTHING changes, maybe I can run a few races this summer.  Maybe I can actually plan on exercising in the mornings.  Maybe I can be med-free.  Oh my God, I haven't been med-free since 1997.  The closest I've been is, I think, 9 pills a day.  I'm getting jittery and excited right now just thinking about it.



My ultimate hope for the new year is that I do in fact reach a full remission.  But barring that, my hope is that, at least for 2011, I can find peace no matter where I'm at, health-wise.  Because sometimes it's the struggle and the searching that wear me down the most.  So even if I can't get better with my friends the whipworms, maybe I can at least accept the things I cannot change.  For a little while. 

Hmmmm.  That sounds like a reasonable strategy, but when the rubber hits the road, I'm probably way too Type A for that kind of Zen.  But it's New Year's!  A time when all things are possible, changes can be made, we can become whatever we want--all we need is resolve!

Happy New Year, everyone!

Sunday, December 19, 2010

Christmas Blessings

Greetings, fair reader!  In a nod to the season, it's time for some good old-fashioned holiday schmaltz!  It's Christmas--a good time to take stock, count one's blessings, and consider your hopes and dreams for the coming year.

I don't really think of myself as some kind of Pollyanna, but whenever I feel a little down, I try to be really mindful of what is going right in my life.  Having a chronic illness can make me feel so "woe-is-me" that it's important to counter that with some positive thinking.  To wit....

This week, a friend of mine landed in the hospital because of her Crohn's disease.  After months of unrelenting pain, weight loss, and failed treatments, including what may have turned out to be a needless surgery, she has now spent four days (and counting) in the hospital.  She doesn't know what the future holds for her health, her job, her plans to go back to school, or even for her plans to spend the winter snowboarding.  Where's the blessing in this?  Well, I thank God (or whomever) that she is getting some help, and hopefully, finally, some relief.  I'm thankful that I know her and have personally witnessed such strength.  The phrase "tough as nails" was invented to describe this woman.  And, selfishly, I'm thankful that it isn't me in the hospital!

I've been blessed by my connections to CCFA (Crohn's & Colitis Foundation of America).  In addition to offering me one of the best experiences of my life (the Team Challenge half marathon fund-raising program), by working for CCFA as the Rocky Mountain manager of the Take Steps charity walk program, I got to meet some of THE BEST people ever, most of whom know exactly what it is to struggle with these dumb diseases every day.  I have had access to the best gastroenterologists not just in Denver, not just in Colorado, but around the country.  I have met pharmaceutical reps who really care about the patients, who have actually personally gone to bat for me when making decisions about my treatment, even when it meant dropping the medication they represent.  (yeah.  Seriously!) Thanks to CCFA, I am much more educated about inflammatory bowel diseases and their treatments and have had multiple opportunities to do something positive in response to them.  So here's my plug: if you or someone you know suffers from Crohn's or UC, please, please, please get connected with CCFA and attend a support group, or check out their archived webinars on their website, or participate in their fund-raising efforts that are bringing about real change for people with IBD.

I've also been blessed with the financial wherewithal to deal with my illness.  I have really good health insurance, but even so, my monthly share of just one of my many medications is $250.  Never as I have made decisions about my treatment options have I had to seriously factor in the cost, whether it be for medications, special protein shakes, over the counter supplements, prescription pro-biotics, acupuncture, or now, helminthic therapy.  This is so huge and something that so many people don't take into account when they consider what it is to have a lifelong disease.  Even among my friends with IBD, I think it's funny how we are so open about the intimate details of our bowel movements, but we never seem to talk about the toll IBD takes on our wallets.

Most of all, I have been blessed with a huge circle of family and friends who support and encourage me, ask after my well-being, make donations on my behalf to CCFA, and literally and figuratively "show up" every time I need them, even when I think I don't.  They know I appreciate them, in what I suspect is mostly an abstract kind of way, but I don't think they know, for instance, that I literally tear up every time I think about them, or that on my worst days, it's my gratitude for TEAM NANCY that pulls me out of my self-pity so I can just get on with it.  I try to pay it forward, by acting on the knowledge that any small kindness I show someone else might, to them, be so meaningful.  But c'mon, the truth is, I've seen so much generosity shined on me that I'll never pay it all back, or forward, or sideways, or any other way. 

As for hopes and dreams for 2011....well just like everyone else, I have the same boring old resolutions, like finally losing that extra 10 pounds or cleaning out my basement or getting my retirement picture in order.  But as I stare down that little vial of whipworm ova in early January, I'll be pinning a lot more hope on those little fellas.  The hope that I will feel "normal" for the first time in a long time.  The hope that my calendar won't revolve around where I am in my Remicade treatment cycle ("Nope.  That weekend would be a bad time to take a trip to the mountains because I will be 1 week out from my Remicade infusion and therefore won't be more than 50 steps from a bathroom at any given time.") I hope I can go back to running a little bit, which makes me feel strong, healthy, and focused.  I hope I will find a new supportive work environment that keeps me hopping mentally but doesn't stress me out so bad I get sick again.  And I hope that as it comes down to counting my blessings at this time next year, I have at least as many as this year, and possibly many more!

Friday, December 17, 2010

Welcome!

First time visiting this site?  Welcome!

Let me orient you a little.  First, I want to point out that it's all about UC and IBD here.  And I know that can get a little boring, believe me.  But I specifically created this blog as a place to put all my ulcerative colitis "stuff" so that I might have a chance of creating a little UC-free space in my real life. 

So if you want to hear about the other aspects of my life, like how much I love to cook and watch reality t.v. (not necessarily at the same time), or my struggles to find just the right haircut, or my thoughts on what makes the perfect cup of coffee, or how I like to spoil my dog, my husband and my cat (in that order), you'll have to talk to me in person or on Facebook or whatever.  But if you're interested in what's new in my own battle with UC, well, this is your first stop.

More specifically, this blog is about the pursuit of a new, relatively untested treatment for UC: helminthic therapy.  Also known as whipworm parasite, I'm planning to introduce 1,000 ova of these little fellas to my system in January in hopes they will be a game-changer in my ongoing slog against this stupid disease.  I'll be using this space to document my progress on this treatment for other folks who are thinking of pursuing this course of action.

Please note that under "For your information" I've included some links to what I think are some really good resources on the topic of IBD, including a couple of folks who are also keeping blogs about their experiences with helminthic therapy.  I'd like to point out that most of these people are waaaaay more versed on the in's and out's of this treatment than I am, so I trust a lot of what they have to say.  Plus, there's even a link to a recent allusion to IBD on Jon Stewart's Daily Show on the Colon Comrades site.  We're going big time now!

Now that you know a little about the site in general, I'll just post a quick update on my status.  It's been a lousy week.  I had a really rough night on Monday, when I was woken from a sound sleep with the realization that needed to get to the bathroom RIGHT AWAY and then didn't quite make it.  So there I was, in the middle of the night, cleaning myself up, and then when I got back to bed, I was lying there tensed up with abdominal cramps and the lingering sense that should I fall back to sleep, I just might find myself making another mad dash.

So.  Tuesday was spent on the sofa all day, desperately consuming all the fluids I could, and trying to catch some sleep between more trips to the bathroom.  It's gone steadily up from there, but still, as of yesterday, I was feeling vaguely achy and flu-ish, which usually means I'm having trouble staying on top of the dehydration game.  So I continue to try to remember to drink, drink, drink.

In this last week before Christmas, I'm hoping for a steady increase in well-being so I can participate fully in all the HO-HO-HO that will be going on.  That, plus a little more snow, would be just the ticket for a happy holiday!

Wednesday, December 8, 2010

Worms in the news

Last week was a big week for my friends the helminths.  They got some great PR when Scientific American published an article about the use of parasitic worms in treatment of autoimmune disorders.  Then, NPR picked the story up, giving this treatment even a little more mainstream exposure on All Things Considered on December 2nd.  (Thanks, by the way, to everyone who contacted me to let me know they heard about the worms on the radio!  That was awesome to know that so many people have been keeping their eyes and ears open on this.)

What was really cool about these stories, from my point of view, is that the subject was an ulcerative colitis patient who treated himself with whipworms.  This is one of the few people I have heard of who have my same disease and used the same treatment I am seeking.  In fact, the company I am working with on this tells me I am probably going to be patient number 25 or so.  (Notably, one of those folks is a fella who writes the Colon Comrades blog.  I encourage you to check it out.)

So often, research and new treatments for IBD involve Crohn's disease first, and those of us with UC are left to extrapolate results from there.  Truth is, although related, these are very different diseases in ways we don't quite understand yet.  Of course, Crohn's is so nasty that if I had to choose, I would definitely stick with UC, but still, I feel like a little left out sometimes when it comes to attention to my own ailment.

Also of interest are the findings of the researcher, P'ng Loke.  Basically, he describes the function of the whipworms as catalysts for ramping up mucus production in the colon by stimulating production of interleukin-22 (IL-22), while suppressing an inflammatory molecule, interleukin-17 (IL-17.)   That's a little bit different than the descriptions I've heard, stating that whipworms give your immune system an appropriate invader to focus on, rather than attacking itself.  Also interesting about this study is that it looks like the worms affect the areas of the colon where they take up residence, but not necessarily the colon as a whole.  I have what's referred to as "left-sided" colitis because it's in my--you guessed it--left side, so I sure hope the little fellas will know exactly where to go!

No doubt, I am fascinated by all this stuff, but when push comes to shove, truth is I want to just forget I've ever heard of ulcerative colitis, if only for a little while.  That's why I'm really excited to get my treatment with whipworms.  Late last week, John and I booked our tickets to pick up my worms on January 6th!  Given that the treatment can take about 8-10 weeks to work, I am hopeful that by my next birthday on April 8th, I will be seeing some improvement.  Just in time for spring running season!  Sweet!

Lots of people have warned that I may not see full remission from this treatment, or even any results at all.  That's why I've tried to keep my expectations under wraps a little.  I am hopeful that I can significantly reduce my meds, starting with prednisone, then maybe Remicade, and hopefully also azathioprine.  And I'd love it if my symptoms got just a little bit better.  If my mornings were not such a roller coaster ride of several emergency trips to the restroom.  If I could actually enter a public place without immediately noting where the restroom is.  If I could stop having in the back of my head the possibility that I will spend at least one day a month bedridden from fevers, chills, abdominal cramps, etc.  Does that seem like so much to ask of my wormy little friends?  I think not!

Monday, November 29, 2010

Worm day postponed!

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.

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!

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!

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!"