How I got into this mess in the first place: part four

(Continued.) (Running folks, skip ahead to the third paragraph, and then stop after “It’s not THAT bad, right?“)

Finally, it was time to leave to go to the GI clinic for the colonoscopy. My boyfriend, who is a saint, took me in and waited and took the most excellent care of me afterwards, including doing things like insisting on taking me out of there in a wheelchair despite my protests to the contrary, and immediately taking me in search of the grilled cheese sandwich I wanted more than anything in the world as my back-to-normal-food dinner.

As far as the procedure itself went, the before- and after-care I got were both top-notch. I was piled on with hot blankets while I was waiting to go in, and I was given as much ginger ale and toilet time as I needed when I came out. My only complaint about the entire process (excluding the preparation, mind you) was that I was in a lot of pain during the procedure. I’d been given anesthesia and told that I should feel waves of happy joy and calm washing over me; I kept waiting, and the ocean was being a reticent little twit, giving me at most a barely discernible wave.  Some time into the procedure I started feeling things I was pretty sure I wasn’t supposed to be feeling. I’m lucky in that I’ve not had to have many painful things done to my body in my lifetime, but I have to think that this was the worst, especially because I asked for more anesthesia and didn’t get it. Or at least I don’t think I did; my memory is fuzzy after I remember feeling the pain, but having talked to family members about it, it’s generally agreed that I shouldn’t have had to feel any pain at all. (Wah, wah, I’m so entitled! But really, like I said earlier, who really wants to feel a tube rooting around in their insides for that long?) So that sucked, but it was over eventually. I was told that I was clear in the colon (channeling Dave Barry: this would be a great name for a rock band), but that some biopsies were taken due to inflammation they’d found in the rectum, the results of which I’d have some time the following week. I was a bit skeptical of that, since it was the week leading up to Christmas, and I figured they were just as eager as I was to get home and be with family and friends and not have to do any work. But, I was told, “if you’ve not heard anything by Thursday, give the clinic a call”. Finally, I had a timeline on a concrete answer – and it didn’t sound like the worst possible outcome! But, I didn’t want to start telling myself that it wasn’t something only to later find out that it was, so I steeled myself to sit back and wait. And wait. And jump sky-high every time the phone rang.

Before the procedure the attending nurse and I had been talking about running, and I asked her if I could go for my usual long run on Saturday morning – about 15 hours after the procedure was finished. She said I should be fine, so I ate a hearty dinner (or two) and got plenty of rest, which was not accidental; I was absolutely exhausted, and had no trouble falling asleep. I woke up Saturday morning and felt basically okay, and went about preparing myself for my long run as I always do. I’d figured on taking it nice and slow, dialing the distance back to 7.5 miles, and not pushing myself if I felt any pain.

Well.

This is where I learned a very important lesson about running after a colonoscopy: it may work for some people, but I am not, not, NOT one of those people. I felt okay until my first downhill stretch, which was… oops, 0.1 miles into the run. I don’t know what it’s actually like to run while you’re being stabbed in the side, but I imagine this feeling comes pretty close. When I went uphill or on a level surface the stabbing subsided, since gravity was no longer working against me, but I also started to make the unpleasant discovery that the slower I went – and going slow is the point of the long run, yes? – the worse I felt. So you want me to speed up, even though I know I can’t sustain a faster pace for the entire time?  I thought. Nahhh… I think I’ll just hold my side like I’ve got a stitch in it, and soldier on. It’s not THAT bad, right?

This is where I learned a very important life lesson in general: listen to your damn body when it tells you something. I don’t know if it was stupid, stubborn pride, masochism, or the fact that I was too embarrassed to try to hop on a bus home that made me keep going, but I slogged through to the end. That I could barely stand up straight should have been an indication that something was not right, but I kept on going with my day – showering, going to the store, going on an eight-hour cookie-baking spree with some dear friends (which was an absurd amount of fun and 200% worth it, even though I didn’t learn until later that all the sugar I consumed while taste-testing did not do my digestive system any favors), even going out afterwards for dinner and beer. That was dumb. I was in a lot of pain, and at one point even considered calling the GI clinic to talk to the doctor on call to see if something was really wrong. I figured that the pain was due to the biopsies they took, but I ended up not calling them and went to bed, hoping I’d just sleep it off.

I did, more or less, but did the also-stupid (but, I admit, totally worth it) thing of eating burgers and pizza and drinking beer while watching football all day. Again, in retrospect, this was probably not the wisest thing for my digestive system. But I didn’t hurt so much any more, so I thought it was okay.

Monday and Tuesday came and went. I got no phone call from the clinic; instead, I got notice of mandatory jury duty service for me in early January. Fun!

Wednesday came. I was feeling better, but still with some cramping where I’d previously felt stabbed. I did some Googling (AGAIN with the bad ideas!) and found opinions fairly divided between ‘this is a concern’ and ‘you’re just slow to heal’, so I chalked my pain up to the latter. Mid-day I got up from my desk to go do something, and missed The Phone Call, which led to a solid ten minutes of staring at my phone before listening to The Voicemail. (Which was, of course, inconclusive, as it was just “Your lab results are in, please call me to discuss!”) So I called. We played phone tag. And finally – after nearly three months of wondering what in the hell was going on Down There – I had my answer.

The bleeding was a result of inflammation caused by ulcerative colitis (technically proctitis since it’s – for now – confined to the rectum), and the pain I felt was not from the biopsies but rather from the inflammation itself. When my doctor said “what questions do you have?” I was completely blindsided. Where would I even start? I thought about telling her, “Let me Google this and get back to you with my questions”, but thankfully my brain actually turned itself on and did not tell the woman who had now twice rooted around in my insides with tubes that the Web would be a better source of information than she, the specialist, and I told her the truth: I had every question there could be, because I knew nothing about the disease. Ironically, one of the first things she said was that I should look at the CCFA website linked at the bottom of this page (and every page on this blog), and it has actually been a really thorough resource as far as what the disease is and isn’t, what kinds of treatment are available, and what I can expect from here on out as far as changes to daily life and work and diet go. (If you want to go there to do some more reading, I’ll pause to let you do so. Back? Excellent!) We agreed on an initial treatment course, and made plans for a follow-up visit in late January. At that point, my day at work was effectively over, as I confess I spent the rest of the afternoon doing (gulp, sorry) Internet research and getting the word out to family and friends – though, in my defense, there were literally only a handful of us in the office and nobody was really doing much work anyway.

Thus began Day One of my journey to eventually understanding what all of this meant. It took a little while and a good amount of research for it to hit me, really, but there it was, at last: I have a chronic disease that I will have to manage for the rest of my life (unless surgery becomes necessary later on). It is by far not the worst disease a person could have – and it’s certainly not the worst of the inflammatory bowel diseases out there – but it’s still the sort of thing that can change the way I live and work and play. Can I manage that? Can my loved ones manage that? What happens if one, or all, of us can’t?

So that’s where I’m left, and where I’ll pick up in the next section of numbered posts, entitled “Now what?”, in which I stop looking back and start looking ahead.

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