Sorry, been away (as it seems is usual). Does it upset you when people who are active on here disappear without a trace? Sort of makes you think the worst, doesn't it? Well.......I'm about to disappear. For how long I don't know....could be a month or two or maybe forever........we have no way of knowing these things. But since it bugs me when folks simply drop offline......because I DO think the worst........I'm posting this to let you know I might not have time to pop in here and chat. Yeah, it's health related........and you know how that goes. Hope for the best, but expect the worst.
The short (long) story is that because I was short gutted 12 years ago, life has been pretty good…..but I've been waiting for the other shoe to drop, so to speak. And it may be dropping. After my surgery and ostomy back in 2014 I was on TPN for a year to get my weight back up and give my bowels time to adjust to their new role of absorbing different things in different places. I weaned off TPN in about a year, to the surprise of everyone, and my weight was stable. So life was good. And it stayed good, except for some minor excursions into the wacky world of dealing with an ostomy.......but that was all small potatoes. So I've been grateful for getting those 12 years. Had my operation occurred 10 years prior to when it did I'd be pushing up daisies by now, as the surgical technology and the whole TPN thing has advanced that quickly.
Everything was pretty good until this past May, when for no reason that I or anyone else can determine, my weight started dropping. And I mean fast! Like a pound or two a day with no changes in my eating habits, hydration or lifestyle. After my weight dropped to a lower limit I set in my brain as a 'not to decrease beyond or go into full panic mode'......I called in the big guns.
So I've been working with the transplant team at Georgetown, one of the nations most successful transplant groups.........but not for a transplant, just because they deal with short gutted folks the most, and had the most experience with that condition. We've done all the testing, poking and prodding, but are still coming up empty. Scoping shows my bowel looks fantastic, and other than a fat absorption issue that's normal for us short gutters.......we have no idea what's going on. My stoma does need a revision, which I've scheduled to happen in a few weeks, as the very tip of my stoma has strictured, but I dilate that every morning, and although a pain in the ass, it' manageable. There's no indications of active Crohn's disease anywhere, and the stoma thing looks just to be caused by stress to the bowel. Yeah, I rolled my eyes at that one too........but there's nothing to indicate anything else is causing it. In the end it will be a piece of the puzzle we just don’t understand today, but will make us wonder why we didn’t. Seems that damn hindsight really is 20/20.
But my weight keeps dropping and we can't explain why......or correct that. Motility meds dosage has no effect, nor does any dietary changes, such as restricting fat intake of stopping all sugar intake. So at this point I’ve sounded the alarm and it's all hands on deck, which means I need to direct my full attention to trying to stay alive for as long as I can. My boat is takin’ on water, so there’s not time to stop and chat………if you know what I mean. Of course, if things change, or I hit a lull because the Reaper is late for our appointment………I’ll shout out. I haven’t picked out my casket yet, but I did see a very interesting video the other day about something called a “green burial”. I’ll put the link at the bottom if you dare want to take a look. It sounds weird at first, but the more you think about it……and consider what the Bible says about cremation….it sort of makes sense. Why postphone the inevitable? Anyway, I’m not ready for that, but I think you will find it interesting regardless.
So I’m about to head down a path I’ve been dreading, but knew would eventually have to be travelled. They say this kind of stuff makes us stronger, assuming you survive. I guess we’ll see. But I'm not fooling myself here. The body is a wonderful machine, and when you remove large parts of it you upset a very delicate balance. The medical community works hard to find ways to improve that imbalance, but some rivers are just too wide to cross, and eventually any bridge that’s built will eventually collapse. After all, there’s no foolin’ Mother Nature! I always liked that commercial as a kid. But seriously, we really do take for granted what our bowels do in our daily life, and if you research it a bit you’d be amazed at all the processes that are engaged, and see how upsetting ever the smallest part of one of those processes can bring the whole house of cards down.
Look, I have no idea how this will turn out, but we’ve got a few things left to try, so the journey continues. I just want to take a moment (or 10) and let you know why you won’t be seeing much from me in the way of posting unless things do an about face and start getting better. With that said, I just want to say thanks for all the info, support and friendship from you guys on here. Opinions differ at times about different things, and that’s ok. What’s important is the underlying bond that brings everyone to this site in the first place………and you know what that is…..we care about each other. So thanks for that!!! Hopefully I’ll be back in a bit and have a few good stories to tell. If not……..well……let’s not got there just yet. But you know what I mean. Here's that video I was talking about;