My SBO #2...
So last week we talked about my first small bowel obstruction, which happened in the middle of November. I was in the hospital for about a week or so and then was sent home. It was at that time that I decided, with the agreement of ALL of my providers, that I needed to stay on liquids until we figured things out a bit more. Dr. Vrees, my surgeon had asked me to wait six months to decide if the poop pipes were working. At the time of my first SBO, I was just past three months. Even though I was pretty sure things weren’t going as planned, I promised myself that I would wait until February to decide for sure, even though I was already researching everything I could on alternatives to adhesive appliances.
Ok, so fast forward about six weeks and we are now pretty deep into January 2021. I had been pretty strict about the whole liquids only thing and every time I thought about cheating, my partner would say, “I don’t know Megan. But what I DO know is that you DON’T go to the hospital when you DON’T eat food.”
See, after a year of being in and out of the hospital, we at last had a known cause. And as weird as it sounds, it was nice to feel like I had some control. And he was right. If I put food in my mouth, I ended up in the ED. How I made it six weeks without an obstruction is literally because I DID NOT EAT FOOD. AT ALL.
Until…I cheated. Not eating food is hard. And while I was super committed to staying out of the hospital, I admit that I had a moment of weakness. And the culprit was…a single chicken nugget. ONE. That was all it took. And so on January 20, 2021, I was back in the ED. And guess what! I had another SBO! So inpatient I went…again.
This time I specifically asked for an IV with glucose so that my blood sugar wouldn’t tank while I was unable to eat food. So that problem was alleviated. But we did a gazillion other tests to see what was going on. And per the norm, or at least my new norm, there were no identified problems. But I was miserable. And I realized that my quality of life was literally in the toilet. It took me months to realize this but as we started to try to plan something for my birthday in February, I realized that the only thing I wanted was to go out to dinner, and I couldn’t even do that. And not because of Covid. But because I was afraid I’d shit my pants. And I was afraid that if I ate food, I’d end up back in the hospital. And here I was anyway. And so I decided that I wanted a permanent bag, whatever that meant.
So one day Dr. Vrees came in and said, “So, you have not done well with this reversal.” To which I replied, “you are correct.” And that’s when he said that we have three issues. The first was the repeated obstructions. The second was the overall feeling of ick that I got when I ate any food, and the third were my pooping problems. He said, “Now, I only want to have to go in there once so we need to make some decisions. If we could fix the obstruction and the food issues, where would you be with the third issue? Where would your quality of life be?”
I looked him straight in the eye and said, “It would still be horrible. I want to reverse the reversal.” To be honest, I think he was a bit surprised that I was the one to suggest it. But there it was, out of my head and into the head of my surgeon. And he agreed. He said that I had something called LARS, which stands for Lower Anterior Resection Syndrome. And the symptoms are…constipation, diarrhea, fecal incontinence, extreme urgency, and pelvic floor dysfunction. And I had every single symptom listed. And the only way to fix LARS is to learn to live with it, which would mean I would never be able to sit through one of my kids sporting events or performances again, or a permanent bag. I chose the latter. My kids had been through enough. My sister said it best… “Your kids deserve a mom that’s not running a risk of shitting her pants every time they go to the park.” And she was right.
Once this decision had been made, I actually felt much, much better. And they actually advanced my diet to food. Now, I reminded them that bad things happen when I ate food, but nobody was worried but me. So, I ate the food they gave me. And it wasn’t super soft, mushy food. It was chicken pot pie. And it was pretty delicious.
The next morning the nurse came into my room to remove my IV because “they’re sending you home today.” To which I replied, “No, no, no. I can’t eat food but you guys made me so now you guys need to make sure that I don’t have another obstruction before you release me. You need to keep me 17-24 hours to see what happens.”
And guess what happened? By hour seventeen, I had not had a bowel movement since I put the food in my mouth. That’s a bad, bad sign. And then the abdominal cramping set in. Another bad, bad sign. And so they did a quick little scan. And guess what! I had a fecal impaction…after ONE meal! Now, this was my second impaction, and they hurt as much if not more than an SBO. So I was crying, and wailing, and writhing, and puking. I puked and puked and puked. And finally passed out from sheer exhaustion and from the morphine that they had to give me.
The next day it was agreed that this whole permanent colostomy was a good idea but that I needed to stay on liquids until I was able to get it done. And Dr. Vrees is a super busy guy and he wanted me to swallow an endoscopy camera first (that whole thing takes weeks as you will learn next time) so I had to wait until March 1, 2021. This means that I was basically on liquids for nearly seven months. All that weight I gained during chemo just fell right off. And my relationship with food was forever changed. Food, something I had always really enjoyed, was no longer something that brought me pleasure. It brought me anxiety and reminded me of how broken my insides were. And while I’m sharing this with you only three months after my permanent bag was installed, I can safely say that my feelings about food have not wavered one little bit.
Ok, that’s it for now. Thanks for showing up and watching. I hope that my story helps to remind you that advocating for yourself is totally ok and appropriate to do, as you, yes YOU are the expert on your body. And you, yes YOU deserve to feel well, head to toe, inside and out.