I'm glad to report I had a terrific colonoscopy yesterday! YAY! No, seriously, I was really happy to participate in this little procedure since it's the only way to really know what's going on in there. As with most things, there's good news and bad. Good news: the inflammation is limited to the last 20 cm (about 8 inches) of my digestive tract. Bad news: that last 20 cm looks pretty bad. Ulceration, bleeding, mucus--it's pretty icky. Good news: increasing the meds that have a systemic effect (i.e. prednisone) probably isn't warranted. Bad news: Making enemas and suppositories a regular part of my regimen probably IS warranted. Good news: At least there's something different I can try. Bad news: I've actually used these treatments before, to little effect. All that, plus, no sign of the worms on that colonoscopy. That was a big disappointment, even though I should have already known, since my stool sample tested negative.
I wore my "I (heart) Nancy's :" t-shirt to the endoscopy clinic and was really pleased that all the staff appreciated the joke. A few people in the waiting room glanced at me like I'm nuts, but hey, I probably am a little nuts, so that's okay.
As an aside to any readers who are "of age" for colon cancer screening: I've done it four times now, and I'm here to tell you this procedure is NO BIG DEAL and is a much better way to go than to put yourself at risk for colon cancer. No, it's not pleasant. Sure, the prep sucks. Yes, it's a little difficult to willingly put yourself in such a vulnerable position. But the drugs are pretty good, and seriously, it's so much better than even the risk of colon cancer. So go get yerself checked, people.
I spent a little time this a.m. looking back over my posts on this blog, and I am just completely overwhelmed with sadness. What a waste. All that time, I was so hopeful, cracking jokes about "the Union," talking about how I had to step it up in my eating habits to help those worms along, etc. All that, and come to find out, nearly 6 months later, those little guys were never there in the first place. After spending about 9 months setting up this treatment, scheduling travel to one foreign country, cancelling that, re-scheduling on short notice to another foreign country, feeling like crap this whole time....
Mother-f***er. Arrrrgh. (Oops. Looks like I just slipped from "sad" to "mad.") OK. Gotta come to terms with it. "Mad" is not a good place for me to be. Sigh. Alright. Take a deep breath. Stay focused on "what now?" You can do this.
I'm not done with this treatment, even though I don't know why it didn't work out the first time, and even though I'm having a heck of a time getting the next treatment set up. I don't think it's the worms' fault this hasn't worked out so far; I think that responsibility lies strictly in the realm of us humans. So I'm going to keep forging ahead, and hoping that in ANOTHER 6 months, I have better news to report. (god, seriously? ANOTHER 6 months?)
Ok. Better to just admit it. This is a pretty "down" day and I'm not going to be able to talk myself out of feeling really bummed. Even though I'm wearing the t-shirt, truth is, I don't really love my colon so much just now. I'll just check in again when I'm in a better place...
Friday, May 27, 2011
Friday, May 20, 2011
Taking Steps Against IBD
Did you know that there's a non-profit organization that has had a hand in developing every major advance in IBD treatment in the last 40 years? Did you know that this same organization sends hundreds of kids with IBD to camp every summer so they will have a chance to feel like a "normal" kid while building a valuable network of other kids who know what they go through every day? Did you know they provide tons of valuable info to the 38,000 Americans who are newly-diagnosed each year? Did you know you can support this organization by making a donation to support their Take Steps walk fund-raising event?
It's all true!
You can make a donation to CCFA by going to my very own TEAM NANCY website. Just click here!
I'm not feeling up to walking myself this year, but that just makes the cause all the more meaningful to me. I hope you'll join me in taking a few virtual steps toward a future free from digestive diseases by making a donation.
On behalf of over 1.4 million Americans with IBD, thanks for your support!!
It's all true!
You can make a donation to CCFA by going to my very own TEAM NANCY website. Just click here!
I'm not feeling up to walking myself this year, but that just makes the cause all the more meaningful to me. I hope you'll join me in taking a few virtual steps toward a future free from digestive diseases by making a donation.
On behalf of over 1.4 million Americans with IBD, thanks for your support!!
Wednesday, May 18, 2011
Oh no! I'm Negative!
For those who have been so kind as to say that they appreciate the way I'm always so upbeat and positive about my whole experience with IBD, I've got news. It has now been medically proven that in fact, I am negative!
A few weeks ago I contacted the good folks at AIT to let them know I wasn't seeing any effects from my wormy little pals yet. I knew that it was possibly too early to tell, but I wanted to just touch base in case there was reason to be concerned. I didn't want to wait several more months and then have them say, "Why didn't you tell us sooner that nothing was happening?"
Until just recently, I've been okay with the idea that, Hey, maybe this is just going to take a little longer, or you know, I had a pretty good last couple of days--maybe those little worms are getting started. But within the last three weeks or so, I've just felt like those rose-colored glasses might be getting a little bit tight, you know?
Still, I was a little surprised when Jasper (my worm wrangler) didn't just tell me, "It's okay. You just need to hang in there maybe 4 to 6 more weeks. Let's keep an eye on things." Instead, he wanted me to send a stool sample right away so they could test for presence of whipworms. (Very funny story about filling out the customs form for that very special package. I'll save that for another time.) Plus, he wanted me to start making plans right away to receive at least 2 more doses of helminth ova. That means I would need to schedule foreign travel--at least 2 more trips.
My initial reaction was, "Whoa! Slow down there, fella!" Sure, I will ship you a vial of my poop so we can see what's what, and I'll start kinda looking around to think about where and when I could go to get more worms. But I also am due for a colonoscopy soon, so maybe we'll wait and see what visual confirmation we have of what exactly is going on before I make any further plans.
And then, the phone call came.
It was Monday afternoon when Jasper called and said simply, "You're negative." Um. What? "Your stool sample is testing negative for whipworm. They aren't in there. Sorry." Sure, this is exactly why we did the test, to see if this is the situation, but still, when the truth came out, I was kinda dumbfounded. Together, Jasper and I did some quick math to see exactly how long it was since I had ingested the ova. 118 days. Apparently, the "textbook" timeline for when you should start to see evidence of the worms in your stool is 75 days, but Jasper says that for him and for others, 115 days was the magic number, so I'm right on the cusp there. We'll do another stool sample this week to see, but I gotta admit, it looks pretty grim.
So what explains why none of those little guys survived? No idea. Were they not viable to begin with? Did I receive a dose of some inert liquid instead of the powerful 1250 TT ova I was supposed to get? I don't know, but I can tell you that since my tongue and the back of my throat tingled for a while after taking them, I suspect that little vial wasn't full of just water. Did my immune system kick into high gear and push those fellas out? I don't really think my body rejected them because other people to whom that happens report a violent case of diarrhea, fever, etc. soon after inoculation, symptoms I never had.
I don't have an answer for what happened, but kinda like when I got my UC diagnosis, I don't really care how or why--I am more focused on "now what?" (As an aside, it makes me a little bit nuts when folks with IBD obsess about how they got this disease. Was it something in their diet? Is it genetic? Who cares? It's not like if you knew exactly where it came from you could reverse course. You've got it now, you're going to have it forever, so get over what happened and start looking at what you're going to do now. But that's just me....)
As for me, the answer to "now what?" is that I am going to step up the plan to get more worms, and toute de suite. I started down this path over a year ago now, and can't believe I have nothing to show for it yet, except a big hole in my savings account and a few stamps in my passport. But I am definitely not done with this treatment yet. I could handle the news (I think) that, "Hey, they're in there, doing their happy little wiggly dance, but it just looks like they aren't going to help you. Sorry!" But I cannot abide, "Well, they just didn't survive. Oops."
Someone asked me a few weeks ago how I'm doing and I spelled all this out for them and they said, "Yeah, well you just want to see this through and then you can move on to the next thing if you need to." But you know what? There IS no "next thing" for me. As far as I can see, what's left for me are two options that really aren't on the table: surgical removal of my colon, and massive dietary overhaul. I've looked into both, and I am not a very good candidate for surgery, and the kind of diet we're talking about would be so soul crushing, that really, my life would have to actually be on the line, in a very real and immediate way, for me to take that on.
So that's where I'm at right now. I'm negative, but trying to remain positive. Staying hopeful that in the next few weeks, I will ingest some more wigglers and be on my way to health and happiness. Sure, I'm disappointed that I'm not already there, but over the 14 years I've been dealing with this disease, I've been up and down so many times, I know the drill. You just keep on keepin' on.
A few weeks ago I contacted the good folks at AIT to let them know I wasn't seeing any effects from my wormy little pals yet. I knew that it was possibly too early to tell, but I wanted to just touch base in case there was reason to be concerned. I didn't want to wait several more months and then have them say, "Why didn't you tell us sooner that nothing was happening?"
Until just recently, I've been okay with the idea that, Hey, maybe this is just going to take a little longer, or you know, I had a pretty good last couple of days--maybe those little worms are getting started. But within the last three weeks or so, I've just felt like those rose-colored glasses might be getting a little bit tight, you know?
Still, I was a little surprised when Jasper (my worm wrangler) didn't just tell me, "It's okay. You just need to hang in there maybe 4 to 6 more weeks. Let's keep an eye on things." Instead, he wanted me to send a stool sample right away so they could test for presence of whipworms. (Very funny story about filling out the customs form for that very special package. I'll save that for another time.) Plus, he wanted me to start making plans right away to receive at least 2 more doses of helminth ova. That means I would need to schedule foreign travel--at least 2 more trips.
My initial reaction was, "Whoa! Slow down there, fella!" Sure, I will ship you a vial of my poop so we can see what's what, and I'll start kinda looking around to think about where and when I could go to get more worms. But I also am due for a colonoscopy soon, so maybe we'll wait and see what visual confirmation we have of what exactly is going on before I make any further plans.
And then, the phone call came.
It was Monday afternoon when Jasper called and said simply, "You're negative." Um. What? "Your stool sample is testing negative for whipworm. They aren't in there. Sorry." Sure, this is exactly why we did the test, to see if this is the situation, but still, when the truth came out, I was kinda dumbfounded. Together, Jasper and I did some quick math to see exactly how long it was since I had ingested the ova. 118 days. Apparently, the "textbook" timeline for when you should start to see evidence of the worms in your stool is 75 days, but Jasper says that for him and for others, 115 days was the magic number, so I'm right on the cusp there. We'll do another stool sample this week to see, but I gotta admit, it looks pretty grim.
So what explains why none of those little guys survived? No idea. Were they not viable to begin with? Did I receive a dose of some inert liquid instead of the powerful 1250 TT ova I was supposed to get? I don't know, but I can tell you that since my tongue and the back of my throat tingled for a while after taking them, I suspect that little vial wasn't full of just water. Did my immune system kick into high gear and push those fellas out? I don't really think my body rejected them because other people to whom that happens report a violent case of diarrhea, fever, etc. soon after inoculation, symptoms I never had.
I don't have an answer for what happened, but kinda like when I got my UC diagnosis, I don't really care how or why--I am more focused on "now what?" (As an aside, it makes me a little bit nuts when folks with IBD obsess about how they got this disease. Was it something in their diet? Is it genetic? Who cares? It's not like if you knew exactly where it came from you could reverse course. You've got it now, you're going to have it forever, so get over what happened and start looking at what you're going to do now. But that's just me....)
As for me, the answer to "now what?" is that I am going to step up the plan to get more worms, and toute de suite. I started down this path over a year ago now, and can't believe I have nothing to show for it yet, except a big hole in my savings account and a few stamps in my passport. But I am definitely not done with this treatment yet. I could handle the news (I think) that, "Hey, they're in there, doing their happy little wiggly dance, but it just looks like they aren't going to help you. Sorry!" But I cannot abide, "Well, they just didn't survive. Oops."
Someone asked me a few weeks ago how I'm doing and I spelled all this out for them and they said, "Yeah, well you just want to see this through and then you can move on to the next thing if you need to." But you know what? There IS no "next thing" for me. As far as I can see, what's left for me are two options that really aren't on the table: surgical removal of my colon, and massive dietary overhaul. I've looked into both, and I am not a very good candidate for surgery, and the kind of diet we're talking about would be so soul crushing, that really, my life would have to actually be on the line, in a very real and immediate way, for me to take that on.
So that's where I'm at right now. I'm negative, but trying to remain positive. Staying hopeful that in the next few weeks, I will ingest some more wigglers and be on my way to health and happiness. Sure, I'm disappointed that I'm not already there, but over the 14 years I've been dealing with this disease, I've been up and down so many times, I know the drill. You just keep on keepin' on.
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