My Weird Problems...

So Part II of my cancer journey was pretty much all of 2020…yes, Covid 2020. And my timeline here is super muddled so I might have some stuff mixed up, but you’ll still get the general idea.

I had my rectum removed and was given a temporary poop bag on January 31, 2020. And for the month of February, I was in the hospital more than I was home. I had my poop bag, which was honestly the easiest part of all of this. I also had a urinary catheter because I often get what’s called “lazy bladder” after anesthesia, which means my bladder just decides to stop doing its job and refuses, and I mean REFUSES to work. But with my poop bag and my golden purse, we all thought I was going to be fine, just fine.

But then after a week of being home, I started having excruciating pain in my backside which we began referring to as rectal pain and pressure. It felt like my body wanted to poop, and poop desperately, but obviously that wasn’t going to happen since my poop pipes were not connected. I spent hours and hours and hours in the bathroom, knowing that nothing would come out, but somehow getting some relief. It was so bad that after being home for about five days, I ended up at the ER and it was determined that I had an infected abscess back by where they had done all that work. So they gave me my new friend, Duncan, Duncan the drain and had me stay for a little R&R at the good ‘ole Miriam Hospital.

So Duncan hung around about five days or so and then Dr. Vrees felt like he, Duncan, had done enough work, and just sort of yanked him out one day and then sent me home the next. But guess who was back in the ER five days later?

So we did the whole thing all over again. But this time they let me bring Duncan #2 home. So now I was dragging three bags around with me…my poop bag, my “golden purse”, and Duncan. I looked like Frankenstein. At one point I was placed on the orthopedic floor at the hospital which is sort of like the second GI unit, and I felt horrible that ortho patients and their kids had to see me wandering around the halls, with bags and tubes everywhere.

But Duncan the Second eventually came out and I was sent home. Again. But guess who was back in the ER about five days later? So we did the whole thing over. AGAIN.
I remember sitting in my hospital room, sobbing about the pain and pressure to the GI Surgery Fellow that was seeing to my case, and saying, “There MUST be something else you can give me besides more opiates. What if we try some muscle relaxers?” So we did. And I got better. Sort of.
During all of this, I kept having something called an “exam under anesthesia” which means they knock me out to explore my butt. At one point in time, my pelvic floor muscles were so tight that they couldn’t even get a finger through them. I was told that it was pretty unusual. And by this point, I was so used to being told that I had fallen off the bell curve that it no longer surprised me.
Dr. Vrees was very confused by my pain and discomfort. He kept suspecting that there was a leak in there, but he couldn’t find one. Until, I finally had a scan done without a drain in. And there it was. A big, ugly leak. See, the drain had masked the leak because, well, that’s what a drain does. It gives excess fluid a place to go. And so the fluid that was coming out of the leak was leaving through the drain. But once there was no more drain, he could actually see the leak. So then he went in, “fileted” my new “rectum” open, stapled it down, and I was good to go.
Another fun little fact about my body is that it’s allergic to adhesive. Now, this may not seem like a big deal, but when you have to have an appliance stuck to your body WITH adhesive in order to catch your poop, this situation is a bit of a problem. We tried to do a skin patch test to see which brand would bother me the least, but I couldn’t keep any of them on long enough to get good data. So we ended up going with the one that seemed to cause the least issue. Plus, I figured that the ileostomy was only temporary, and I can put up with anything for a little while.
Let me tell you that by the time I had my poop bag reversed, my skin was so red, raw, and irritated that you could see the remnants of the square appliance on my skin for WEEKS. It was so painful and so itchy and so miserable. But again, it was only temporary, or so I thought.
The other fun fact is about my pelvic floor. Now, it is not uncommon for women to have issues with their pelvic floor after childbirth or for a man or a women to have trouble after having radiation to the area. Well, my pelvic floor was PISSED. And it was what was causing a good percentage of all that rectal pain I had mentioned earlier. So, I got referred to a urogynecologist. I honestly didn’t even know that this kind of a doctor existed. But they sure do.
Dr. Reardon was my guy. He was so kind and so patient, and let me whine and moan about the pain. After a quick exam, he confirmed that my pelvic floor was basically in a near constant spasm and suggested some trigger point injections transvaginally. Yup, you heard that right. This doc took a big needle, stuck that thing way up in there, and gave me a bunch of injections. And yup, it hurt as bad as it sounds like it might. And I got to have it done not only once, but TWICE! And THEN I got to start using a vaginal suppository of valium. Yup, my girl parts were so freaked out that they required valium all on their own.
Ok, so to summarize…I’m allergic to adhesive, I had injections in my vagina, I had multiple drains put in my butt, and I had my new rectum “fileted”.
And that, my friends, was my spring and summer of 2020. Oh, plus that whole Covid thing. To be honest, Covid was helpful for me in a weird way. It allowed me to do telehealth, which allowed me to keep my business up and running and my family housed, clothed, and eating, it allowed me to have a bit of time to heal, and it prevented me from realizing just how bad things were with my poop pipes, which in turn allowed me the emotional time and space to really try to make this whole situation work. My family and I were blessed enough to not lose anyone to Covid otherwise this part of my story would look very different, and while I’m so, so sad that Covid was ever a thing, there were some positives for me, given the nature of my specific circumstances.
And that my friends is all for this week. Thank you for listening and please remember to get your colonoscopiesand other screenings right on time. And please remember to mine your light and that you, yes YOU deserve to feel the love and warmth that you bestow onto others.