Here’s the predicament. I’ve been thinking about writing a post about this specific problem, but I always back out of it. Either too scared, too tired, or too aware of what other people think. I text and call some friends about these problems…but I’m not sure I’d want everyone knowing about it. AND I’m pretty sure those select friends aren’t big fans of hearing it either, but because they love me they put up with it…or at least pretend it doesn’t really bother them.
Since I’m up right now partially because of said problem, I guess I’ll go for it.
Diabetes has this stigma of shame. We’re irritated with other people’s “should” comments on what we eat, do and want. Can’t eat this, that or the other thing. It’s my opinion that since insulin started with this feeling of shame (the first patient on insulin’s children didn’t even know she was diabetic!!), we’re still trying to break free from the past. However, I believe that the exhaustion and patience it requires answering or responding to the ignorant questions or comments has a lot to do with not talking about diabetes in public.
Crohn’s disease I don’t feel really has a feeling of shame. Most people don’t really know what it is, they’ve heard of it, but have no knowledge. But, in order to really talk about it, you have to talk about abdominal cramping, diarrhea, fatigue and bowels. Cramping CAN come up in conversation…usually between women; even then it’s not 100% socially appropriate. Fatigue is commonplace I suppose, there’s no strings attached really. Though, I’m fairly certain that people who have never suffered from fatigue can only just begin to understand the exhaustion experienced. Now we’re left with the topics of diarrhea and bowels. Maybe it’s just me, since I’m a newbie, but I’m not 100% comfortable writing about or conversing about either. My family doesn’t really like to hear about it, I’m fairly certain if they don’t others probably don’t either. If I don’t talk about it with my doctor then I can’t really tell them what’s going on with my body. And if I don’t talk about it then I can’t change anything.
Diabetes gives you fluency in a new languages: tubing, pump, units, bolusing, basal rates, symlin, endo, carb, novolog, humalog, humulin, strips, high, low, sugar, IOB, ketones, hanglowver, etc. Crohn’s has it’s own language as well, but it seems to be mostly words that are around, just not frequently used by the general public: bowel, diarrhea, cramping, colitis, IBD, colon, fistula, 6MP, MMJ, SCD, liquid, formed, tarry, any descriptive word you can think of to describe poop, constipation, immunomodulator, prednisone, TNF, aminosalicylates, abscess, bowel obstructions, percentage of bowel remaining/removed, biologic, colonoscopy, ileum and oh so many more.
All this goes to say, I’m going to talk about poop. Lately at night, before I try to sleep I get these AWFUL cramps for much longer than I experience them during the day. Some nights I lay in bed and can’t fall asleep because I feel like I have to go to the bathroom, but then I go and can’t go or I’ve just gone and why would I need to go again. But I really can’t sleep because I really feel like I have to go. The main problem is that I am as stubborn as my bowels and I simply don’t want to have to give up. And nothing has been solid in I don’t know how long. If I have a productive day I need 10hrs+ sleep that night which means I have an unproductive day the next…sometimes even the following day as well. I was supposed to call my GI’s office back on Monday or Tuesday, but I didn’t. I need to call today. I don’t really know what to say though. Do I mention the blood in my urine? Do I really have to describe the coloring and shape of my poop? (I know the answer to that one…I just don’t want to haha) The dicyclomine has really helped during the day, not so much at night…which I find rather odd. But that also might be because I don’t eat much during the day and my largest meal is in the evening?
Since I talk about low days or high days or just how I feel with diabetes, I guess I’m allowed with Crohn’s too. People flip out about seeing needles and that doesn’t stop us from taking insulin or symlin in public. So I suppose it’s only fair Crohn’s receive the same treatment.
Perhaps if I go try & successfully go I may be able to fall asleep. Plus, they’re still not done counting my CD race, so I will just have to find out in the morning.