Date: December 28, 2011
My last post was weeks and weeks ago, so in case you were wondering, I am still alive! And kicking. I’ve felt so much better the past several days, but in the weeks before this improvement, things weren’t looking so good.
I had a colonoscopy on December 2nd which showed really severe inflammation, one of the worst cases the doctors have seen. The amount of inflammation in my colon can lead to several dangerous things, including a drop in weight, the inability to rebuild tissues of the colon even once the inflammation is controlled, anemia due to blood in my stools, a blood clot, and perforation of the lining of the colon. Perforation is particularly scary and would lead to emergency surgery, but the doctors say that it’s unlikely that would happen, although possible.
After the colonoscopy, I was taken off of the nasogastric feeding tube and put on parenteral nutrition (PN). This means getting nutrition through a PICC line, which is basically an IV that goes into a larger vein than a typical IV. The reason for switching to it is that when food goes through my intestines I don’t absorb the nutrients due to the inflammation, and so if nutrition is going directly into my bloodstream then we don’t have that problem. I initially gained weight quickly, but the doctors figured that was mostly water weight, from the prednisone. My weight then moved a bit slower day-to-day, then it went down a couple pounds, then slowly went back up, then plateaued, and lately has been building again, and this time it’s likely real weight rather than water. As of today, I’m 10 pounds heavier since the day I was hospitalized, which is great, but I’m still well below my healthy weight. At one point, they tapered me off the PN to see if I could keep my weight stable through eating, but I couldn’t eat enough food or absorb enough nutrients to maintain, and they put me back on the regular volume. I’m okay with being on the PN, but unfortunately it’s what’s keeping me in the hospital; if I didn’t have to worry about weight, I’d be home.
Obviously, the increase in weight and nutrition is good for my health, but the PN does not cut down on inflammation in my colon. They’re even tapering me on prednisone since it hasn’t had any effect. The reason I am feeling better is that I’m seeing a Chinese acupuncturist and herbalist, who has given me herbal mixtures and supplements and has changed my diet drastically.
I had mentioned in my last post about wanting to see him and try the herbal route, but I was thinking that I’d wait until I was out of the hospital. I decided I couldn’t wait any longer. In my situation, time can’t be wasted, and I got the doctors to agree to let me leave the hospital for appointments with him, plus permission to take his herbs and supplements while I’m here. This is very nonstandard, and they’re completely doubtful of this method, but they figure that the sooner I try it, the sooner I’ll realize it won’t work, and the sooner I’ll agree to surgery.
My stools went from being almost completely bloody to having very little blood in each one, if there is any at all.
And from all watery stools to mostly a thicker consistency.
And my stomach isn’t as crampy and uncomfortable.
And I have more energy! I’m sitting up, I’m stretching, I’m walking more, I’m awake, I’m laughing, I’m happy!
And it’s only been two and a half weeks since my first appointment with him. The improvement actually started within the first week. I’m amazed, and relieved.
Of course, I tell the doctors all of this and they’re still skeptical it will pan out. “Those are subjective improvements.” Or “So you’ve seen this much progress [motions with hands a tiny bit] and we want to see this much [sweeping arm motion to show much, much more progress].”
And maybe all of this is true, but also true is the fact that I’m seeing improvement at all, something that hasn’t happened in months, really. I feel confident that I found the thing that works for me, after about seven months of trying alternative routes. If only I had known about this acupuncturist in May, right? But I didn’t, and I’m lucky I know about him now. He is incredibly thorough and intelligent in his work, and he also really truly cares. (An email from him started out with: “It is the best gift for my holidays if you can get better, and I expect you will.”)
I’ve had two acupuncture appointments with him, where we’ve also discussed everything in detail. He has me emailing or calling him everyday to let him know how I’m doing, and he adjusts the herbs, supplements, and diet as necessary. I’m currently taking two types of herbal mixtures and a bunch of supplements. There is also a tea I can have when my stomach is upset, but lately I haven’t needed it.
As for the diet, I am eating very simply – actually there are only a handful of types of food I’m eating right now:
It might sound like an impossible diet, but I’m actually really enjoying it and am not having cravings. Nothing tastes bad, and nothing is too bland. I look forward to eating, and it seems like this diet is helping my colon, or at least not hurting it. As I improve, we’ll slowly add in other foods, but I will definitely still have a restricted diet even after I’m beyond this flare. I’m expecting… sugar and gluten only on rare occasions (a cannoli in the North End once in awhile?) and dairy only in the form of hard cheese or yogurt (and when it’s in a cannoli). Yeast is also good to stay away from with any digestive issues, and I should probably avoid alcohol for the most part.
So that’s the big news! I think it is likely, although not definite, that I’ll continue to see improvement and avoid surgery, so wish me luck in the next couple weeks! I’ll post again soon, with less medical info and more human-interest stuff (like how my Christmas was, or something food-related).