My Belly makes me Homebound

I have the disability IBS (you can learn more about it on this blogpost). What most people don't understand about chronic illnesses like IBS is that chronic illness fluctuates. I might indulge in the occasional bite of glutenous bread and feel fine. I might also do everything my doctor tells me, take all my meds, meal prep only the healthiest foods according to my dietary needs and still be stuck in the bathroom or my bed for days. I don't choose how I feel; my belly decides for me.

Homebound

This blog post is about the hidden factors of IBS that make me homebound, meaning it is hard for me to leave my home because of my disability. IBS isn't a pretty condition. It's bodily. It's smelly. It's not what you think it looks like. That makes it hard to talk about. I don't like seeing commercials for diapers and medications with horrifying side effects when I'm eating. People probably wouldn't like to hear about IBS when they're eating, too. If that describes you, you may want to visit this blog post only when you can stomach it. Consider this my disgust trigger warning. Still, I want to show people the symptoms you probably don't see or notice when someone with IBS is in public. It's a serious illness.

In the bathroom

Like I mentioned earlier, I often can't expect negative symptoms of IBS even if I'm living according to the healthy lifestyle prescribed by my specialist GI doctor. That means two things: I need to know where bathrooms are everywhere I go, and I need a quick, unobstructed path to them at all times. I never know when I'll need the bathroom, but when I do know, I need it fast. The tell-tale signs are often silent and unseen. My stomach starts to grumble and not in a "Feed me" way. I can feel the food and drink move quickly through my body like a child on a water slide. Gas builds up. Is it a fart or shit? Hard to tell.

Either way, I must move fast. I try to rush in a calm, quiet manner. Maybe if I'm lucky the professor in class won't notice I'm leaving, or my friend won't notice I'm rushing out goodbyes because I need to go to the bathroom. Maybe my students won't need my help or supervision for 5 minutes. Maybe not. All they know is I am gone. Sometimes it's over in minutes. Sometimes I'm in the bathroom for hours or I must return every 10 to 15 minutes. It's hard to say until I feel my body purging itself of whatever I recently digested.

Even if I am all alone, I feel gross. I feel alienated by my body. I feel sick. I hope nobody has followed me. I hope to be alone. Sometimes if I can make it there, I go to the bathroom in the basement of the building because everyone I know works on the third floor. Please God let me be alone.

This is now what makes me anxious about living with other people or being in new places. If I have to share a home bathroom with other people, will I have the immediate access I need when I need it? What if I make places smell bad? What if it's out of order? What if a long line of women judge me for going to the single bathroom that is labelled for men? What if lines are long and I won't last another 5 minutes? Dare I reveal my emergency to strangers? What if I'm taking too long? What will the people think of me? What will my friends think of me? What will my partner think of me? What will my roommate think of me?

I started a medication called Linzess. It doesn't stop the symptoms that have me rushing to the bathroom, but it does stop the pain. I wonder if this medication has made my colon the fastest in the world. I am concerned I'll develop more vitamin deficiencies because my food shoots through me before they are broken down to serve my body. Maybe I'll lose weight. It's still worth it. I'd do anything to stop the pain; either way I'd be homebound, or should I say bathroom bound?

In the bedroom

So I go to the bathroom a lot at unlikely times. Is that alone the disability? No. With my digestive track gurgling and shooting food through it, my stomach starts to twist. Not only am I embarrassed. I am in pain. The cramps come both before and after my bathroom appointments. It's like period cramps multiplied by 5. It's hard to walk. It's hard to stand up. It's hard to sit. So I take my pain medications, strap on my TENS unit, and lay on my side in bed until the pain slowly subsides.

A TENS unit is a machine my physical therapist suggested I try. You place these 4 stickers on your stomach, connect them to an IPOD-looking device, choose a setting, time length, and intensity level, and let the machine do its magic. The electric pulses through the stickers counteract the cramping to reduce pain. If you feel the sticker pad, it feels like a subtle shock as if you fell for one of those prank gum toys you'd offer your friends in elementary school. I don't know why it works; it just does. I've seen some people say they can allow men to simulate period cramps on a different setting, but that's not my priority. For me, it helps with pain. My 9/10 pain scale can be reduced to a solid 6/10 if I'm lucky.

The need for the TENS unit and medication works much like the bathroom symptoms. I'll be fine one moment, then the next I feel nauseous. I feel the need to lie down. And the cramps come on quickly after. My partner fetches me the usual medications as I rush to bed with the TENS unit. I can be there for almost 4 hours sometimes. The pain medication is never enough. The peppermint essential oil has become useless to me. Ibuprofen sits in the cupboard wondering why it isn't enough. I lie there wondering if I'll need to go to the hospital again. Pain that intense always makes me feel weak. Even with treatment it still is painful, just not I'm gonna vomit pain.

woman in pain on a bed

At the dinner table

So with all this pain and randomness, don't blame me if I seem upset at the dinner table. The food that got me through stress smells and tastes like a familiar friend, but behind each friend is pain that might unmask itself. Nothing is safe. Then I'm not safe. Then I'm upset. Then the people around me are upset. Then they leave because I'm too much. They don't know or understand my complex relationship with foods. I'm just ruining their good meal.

Staying Home

So if you don't see me at the work function, or campgrounds, or all-day event, I'm probably at home or wish I was at home. I miss out on things I used to enjoy. I miss out on the joys of teaching in-person often. I hope I don't miss out of job opportunities for the same reason.

This is what IBS looks like behind closed doors. There is pain, there is sudden diarrhea, and there is shame and guilt. Behind my attempts at calm demeanors, there is chaos and fear. Don't follow me. Don't ask me. Don't witness me. Leave me alone. Sometimes I just want to be at home.

#IDMD #IDisappointMyDad #IBD #IBS #cramps #bathroom #bedroom #homebound #disability