Time to Eat Cake

In 22 years of Crohn's there's always been an answer to my problem: surgery, a new medication, changing my diet, something. It wasn't always an answer that made me feel 100 percent, but I've felt like there was a path toward relative wellness.

I've had seven small bowel obstructions (SBOs). My first, in 2012, was pretty minor. I went to the ER, but it started to resolve on its own without treatment. They kept me overnight for observation, but it wasn't a huge deal. In 2014 I had an obstruction following a hernia surgery that required surgery. That's when I learned the word "adhesion" (scar tissue) and that more surgeries create more adhesions. It was a few years later, in early 2017, before I was hospitalized again. That time I ate a lot of baby carrots and knew that to be the culprit. So ended my love affair with uncooked carrots.

It took a few years, but last September I once again ended up with a SBO. It happened again in May and August of this year. I've been working with my GI at the University of Michigan (who, for the record, are among the best doctors in the world) to determine how to address them. A CT scan from my August hospital stay showed a narrowing of my small intestine which they thought could be either inflammation (so they'd treat with medicine) or stricture, a type of scar tissue (so they'd treat with surgery). 

A procedure last week, on Tuesday, December 1, determined it was neither and the narrowing had resolved itself. I was told to talk to GI and surgery to determine next steps because my SBOs were being caused by adhesions in the abdominal wall. GI told me to talk to surgery as the next step in the ping pong match that is my health.

Despite not having answers I have been trying to stay active and start running more regularly. Last Saturday morning I woke up around 4:30 am feeling kind of off. I couldn't quite put my finger on it. My stomach felt a little crampy (an odd feeling for me even though cramps are a textbook Crohn's symptom). I couldn't sleep so I got up and had a cup of coffee, enjoying the rare quiet of my house. I was supposed to run a virtual 5k with my running crew at 10 am, and I was wondering if I'd make it.

I was feeling marginally better a few hours later, and I decided I'd run the race. I didn't feel well enough to each breakfast, but powered through. I met my friends and ran 3.1 miles, feeling pretty good (and running an okay time for me at this point in my non-running life). Afterward I came home, showered and ate lunch. Immediately after lunch my stomach felt very gross, bloated and upset. That happens sometimes, so I didn't think much of it. I decided to lie down with my son and hope the feeling would go away.

A few hours later I was filled with dread as the familiar bowel obstruction pain had set in. I didn't want my husband to know how bad it was starting to get, and I still had hope it would pass. I quietly went upstairs and packed a bag for the hospital, stashing it in a closet in hopes that I wouldn't need it.

An hour later I knew I needed it. I couldn't deny where the pain was headed. Around 4:30 pm my husband and son drove me to the ER. I kissed my husband and opened the back door to hug my son who grabbed me in a hug with all his little strength. I was sobbing as I walked into the emergency room. Leaving him for an indeterminate amount of time is the worst.

An ER pro

The ER was the same old, same old: nausea meds, pain meds, CT scan, SBO confirmed, NG tube. I've talked about this before, but the NG tube (in through the nose, down the throat and into the stomach) is the worst. I'm a tough patient and have never had an issue with NG insertion so I was due. This time the nurse was not able to get the NG inserted the first time. Or the second time. She switched nostrils and as tears involuntarily streamed down my face I told her to just go. After it was in place I couldn't stop crying. It certainly didn't feel good, but I was also so frustrated to be here again. And unlike 2017 where I ate all the baby carrots there was nothing to point to this time. I knew it was adhesions and completely random. 

The worst NG insertion ever

I was admitted, and per usual the doctors ordered complete bowel rest (nothing to eat or drink) while the NG did its work. I was injected with pain and nausea meds (there's a lot of throwing up throughout this entire scenario) and slept intermittently. On Monday they did a small bowel follow through to see if the SBO had cleared. This involves taking a syringe and inserting a lot of contrast into my stomach through the NG tube and taking x-rays to see if the contrast will pass. The x-rays lasted from 10 am to 5 pm, but thankfully the days of rest had done the trick. The tube came out and I was on the road to coming home.

It's amazing what a shower can do.

After the x-rays on Monday I came back to my room to a note from my surgeon at U of M on the patient portal. He indicated that because it was adhesions causing my SBOs, he wouldn't recommend surgery because I'd just grow more adhesions. In other words there was nothing they could do. Four obstructions in 18 months, and there is nothing they can do.

I was dumbfounded and gratefully took a shot of morphine from my nurse. Nothing they can do. So this would keep happening? What could I do?

Here's the thing about this disease: it's been 22 years of trial and error. I appreciate all the well meaning and unsolicited advice I've gotten from friends and acquaintances over the years about changing my diet, trying medical marijuana, quitting running, and more. My favorite is "I have a friend whose cousin has Crohn's and she did X and it works great."

Crohn's is different for every patient in terms of both severity and triggers. I have no large intestine. That means at the onset I don't absorb nutrients or hydrate like normal humans. There are a lot of foods I've already (almost entirely) eliminated through the years because of reactions: anything with seeds (including most berries and anything with sesame seeds), raw broccoli, cauliflower and carrots, and red meat (other than burgers which for some reason don't trigger the same way). I've greatly reduced nuts. But this hospital stay made me realize I need to stick with a lower fiber diet. Permanently. And that's hard.

I love vegetables the way some people love cake. Seriously if you presented me with cake or brussel sprouts I'd choose the sprouts 100 percent of the time. Now I've got some tough decisions to make like eating the cake.

Here I am, a day out of the hospital, vowing to make some significant changes to my life. I don't want to hug my son and husband and walk into the ER again. And if modern medicine can't fix me, it's up to me to make big changes. Here's what I promise (because if I throw them into the interwebs it's official right?):

1. A mostly low fiber diet. This means giving up things I really love like beans, brussel sprouts, kale (and other greens), corn and nuts (which I don't eat often but will occasionally imbibe). I really love beans, but I know they don't always agree with me. It's time to commit to doing better. I purchased an awesome smoothie blender, so I'll get fruits and veggies without most of the fiber. 

2. Eating smaller portions. I love food and have a big appetite. Having Crohn's means I can eat a lot and not gain weight. If we order Chinese food I'll eat the entire dish in one setting without thinking of it. Just because I can doesn't mean I should. Eater smaller meals is much better for digestion, and I'm committing to it. 

3. Cutting back on caffeine and alcohol. COVID has done two things: increased both my caffeine and alcohol intake. I need to do better about caffeine and definitely better about alcohol. Both inflame the gut and I need to cut back.

4. Stop taking ibuprofen. We all know ibuprofen is bad for the stomach. I didn't take it for years, but when I hurt my IT band my sports medicine doctor suggested "a few ibuprofen" for pain. I've been like an addict since then, and I know it's bad for me. And it's done. 

5. Eliminate stress. This one is harder, but I've already taken a step by removing myself from my stressful position at the end of the year. Today, one day post hospital discharge, I spent an hour and a half on the phone with colleagues who needed either my help or to vent, and it was exhausting. I love them and want to help, but I was in the hospital yesterday. I need a break and a role that allows me to take one. 

6. Focus on overall wellness including sleep. I don't sleep well, and I have to do better (I say as I type this sentence at 12:31 am). 

There may be more changes to come. As I look at the words on the screen this doesn't seem like a lot, but it's hard. Figuring out what to eat and how to eliminate stress (for a naturally stress-attracting, high-achieving person) is hard. But I don't want to be back in the hospital. I don't want to have the tube in my nose again. I don't want to have an annoying hospital roommate who doesn't know how headphones work. I hear my doctor loud and clear: they don't have solutions. I am engineering my own solutions. It may be more trial and error, but I have to be in control. 

As this crazy year comes to a close, I'm looking back at my three hospitalizations this year and committing big changes in my life. I'm eating the cake!