I didn't stop blogging already, honest. We've been kind of busy the last few days, and I didn't have access to my computer. And, of course, I forgot my password so I couldn't log in on my phone either. I actually missed writing so I may try to play catch up over the next day or so. I'm going to change gears a little bit today. I want to warn you: if you are not comfortable talking about normal bodily functions, this might not be the post to read. I also want to warn you: when I talk about things that are sensitive, or difficult, I tend to use humor. A lot. Sometimes things are so hard that you just have to laugh. And I laugh a lot. If I don't make a joke, then I cry. And I'd much rather be laughing than crying most days. In my own twisted humor, here we go.
You know the milk tag line? "Got milk?" Well, I kind of live by a very different tag line most days we'll call, "Got poop?" Thank goodness for the poop emoji. You know, the poop emoji is the most frequent emoji that I use? Not sure if I should brag about that or not. I find poop jokes hilarious. I was going to tell you a poop joke, but it was too crappy. Oh, come on, you're laughing! Poop is funny stuff!
I will tell you what's not funny though. Having your daughter's GI on speed dial. Having an album on your phone that has poop pictures added to it daily. Or worse yet, not actually putting said poop pictures into the album in a timely manner, and randomly scrolling through pictures of a happy day and then bam. Poop. Well, crap. I even have a poop calendar, that I've color-coded with the different types of poop that she has. Did you know there is a poop scale for describing it? It's called the Bristol Stool Chart. And it describes 7 different types that have pictures to go along with the descriptions. I bet I am one of the only ones who is reading this that has one of those charts printed out. Not just printed out, but laminated. Yeah, that's pretty sad. Or pretty cool. Depending on how you look at it.
There's no question that there is a gut-brain connection. Have you ever had a "gut-wrenching" experience? Or gone with your "gut feeling"? Have certain situations made you "feel nauseous"? Have you ever had "butterflies" in your stomach? The gastrointestinal tract runs from the esophagus to the rectum and is lined with millions of nerve cells that make up the enteric nervous system (ENS). That's a pretty cool connection if you really think about it. I'm kind of fascinated with the complexity of the human body. Anyway, I see it every day with Vicki. It's hard to tell most of the time what is causing certain types of behaviors. But, sometimes there is a very clear connection. It's hard to describe. Vicki is just off. Like really off. More than normal. And her behaviors fluctuate tremendously. And then, low and behold, an hour or 2 later she has a really odd bowel movement. And I have an ahhhh haaaa moment. Also, I am convinced that some of her grand-mal seizures are directly related to the health of her GI tract. I take copious amounts of notes on Vicki's behaviors. I have journals that date back to when she was a baby. It's truly a fascinating read. I take notes so that I can describe what's going on around times she is having significant medical issues. I take notes because Vicki can't. And she can't tell the doctor the last time she had a bowel movement or what it was like. And I take notes because I'm convinced that someday I will find our very own Dr. House, who will pour over my Vicki journals, write on his whiteboard, connect all of the dots, and give Vicki the relief she desperately needs. Mainly, I have to have a way to hold onto hope.
Sorry, I kind of digressed there. Just like everything else in Vicki's life, we have different seasons of poop. We deal with something for a few years, and just when you think you can't handle it anymore, it subsides. And then you get comfortable, and you forget how hard things were. And then it comes back, full force, and there you are again. In a very difficult circle of shit. Vicki has dealt with incontinence her whole life, she was diagnosed with chronic constipation at a time when I thought she was pretty regular. She has been on medication to treat her GI problems, and we have done countless bowel clean-out protocols. She has had more than her share of abdominal x-rays and we are currently dealing with a 4-month cycle of explosive diarrhea and mushy stools which, crazy enough, her x-ray a few weeks ago, showed another blockage in her colon.
Because I usually get a lot of questions about this, I wanted to address gluten-free. No, Vicki is not currently on a gluten-free diet. Although we've thought about it many times throughout the years, she's never been fully gluten-free. Should she? Possibly. It's not a cut and dry decision for us though. Vicki's had many allergy tests, and tests to see if she is sensitive to gluten, she's had Crohn's disease testing, and biopsies were taken to check for Celiac's disease. Everything has come up negative. Every time. Now that doesn't mean we still shouldn't go gluten-free. Although currently, our GI does not want us to try this with Vicki, and we are taking his advise and working through his protocols now. Another reason why we've just never tried gluten-free is that we've never seen any specific behavioral changes, say, after she's had a plate of spaghetti. I know for some kids, you can tell right away from their behavior if they've ingested gluten. Because Vicki has such severe OCD and anxiety, it's not super easy to change up things with her. She typically eats a very well balanced diet, she loves salads and veggies, and fruits. And, yes, she does enjoy her carbs too, but, honestly, in moderation. Even more so since we've been dealing with a diabetes diagnosis (not Vicki) in the family, we've been very aware of the food we've been eating. Anyway, we've had our share of issues in trying to get Vicki to school... things got so severe behaviorally, that she missed well over 70 days of school one year, which eventually prompted home-bound services, and finally a change in placement to a day school. Because her behaviors change so much, you never know what will stop her in her tracks. Some types of foods she takes forever to eat. And it's very difficult to change up a routine of hers, especially what she eats for breakfast. It's one of those... well, what is the most important goal we are working on right now? If it's actually getting her to go to school, then changing up one little piece of her morning routine can have disastrous effects. And those effects can ripple down to months of difficulty that you never thought would occur because of a simple little changeup. So, we think of things all of the time and play out different scenarios in our head (both that we've experienced before, and things that may seem unforeseen and difficult to imagine) and may make the wrong choices. But we do try to listen to the doctors and specialists that work with Vicki. We might try to go gluten-free when the doctor gives us the go-ahead, but we have to look at how her life as a whole is affected by each of the choices we make.
Anyway, like I said in the beginning, you have to laugh. At situations, at yourself, at everything. Because if you don't, sadness may take over and dominate. So, here's a funny antidote for you. We've had to collect stool samples from Vicki twice over this last month. And it's a hard game to play. Not only do you have to catch her going, but you have to make sure the timing lines up with the hours available at the lab. Because there's no point in going through the hassle if it's not fresh enough. So, a few weeks ago, we had a winner. I had the little catch-all positioned fairly good, she went, and I was able to collect it and take it in in a timely manner. I felt like the world's coolest chemist. I had my gloves on, of course, and imagined myself in a hazmat suit and goggles. I got on the floor and had my 7 vials and the multiple collection tools at my disposal. I got right in there, gathered what I needed, measured, poured, labeled, and then shook up my samples. Then I cleaned everything up, placed my samples in a brown bag, and labeled it five guys french fries and put it in the fridge. Just kidding!!! Well, I did put it in a brown bag and labeled it, but the rest I made up. And the feeling of success after collecting the correct samples. Priceless. Ha. I did a little dance, sprayed a little Lysol, and dropped off the samples. Then I did it all again a few weeks later. And the most frustrating part? We got some of the labs back, and yup. Everything was normal. It's not that I want something scary abnormal. But, I do want answers. Something is most definitely wrong, but we can't figure out what.
Do you want to hear another poop joke? Nevermind, it's too corny. {Ba.Da. Bing} Speaking of corn... an easy way to see the motility of your bowels is to do the corn test, or so I've been told. You consume corn, and then see how long it takes you to see some kernels come out in your poop. It actually scared me the other day with Vicki. I saw some in her stool, and I was thinking, when did she last eat corn? It was 12 days prior. I'm not an expert. But that's not good.
I know I talk about poop a lot. It's because it's on my mind a lot. And sadly, on my hands, and on the sheets, and in her clothes. I've thrown away countless undergarments because I just can't sometimes. I've had periods of times where I have to clean her sheets and her room on a daily basis. I cry because she's almost 17 years old, and she still has accidents. She still wears adult diapers at night, and sometimes during a really bad day. She still doesn't know that she has to go at times. And one of the worst parts? Listening to her say, "Belly hurts. Doctor please" And she will say her GI doctor's name. (There aren't many doctors names that she remembers, but he is one of them that she does.) And another thing that makes me cry... her needing to hold my hand sometimes because she needs to when she is in the bathroom. But you know what? I want to be right there with her, holding her hand when she is struggling and telling her it's ok. And then her saying, "Mommy, take a picture of poopy, please." Because she knows the drill. And she has incorporated that into her OCD repertoire now. Sometimes shit just stinks. And this stinks. And I hate it for Vicki. Well, on that note. Love you all. Hopefully, next post won't be as crappy. xoxo
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