Dear Friends,
I'm writing to you all in a great deal of distress and angst and would deeply appreciate any wisdom, conjectures, suggestions, and advice you all might have to share. I apologize in advance for the length of this message.
First, because there are a variety of different circumstances and underlying conditions that eventually bring us to a place where we require an ileostomy, I want to share some quick background information. I am a 57-year-old female. While in my 20s, I developed a spinal cord tumor. Doctors would operate, and then it would grow back, and they'd operate again. Over and over. The combination of both the tumor itself and the repeated surgeries permanently destroyed my bowel and bladder function, as well as caused some additional neurologic damage. I have what is called “neurogenic bowel and bladder,” which in practice means that I have to manage my bladder through catheterization and my bowel (up until the ileostomy) through strong stimulant laxatives. I'd only take the laxatives every 5 days because when they would eventually kick in, my condition meant I had no control whatsoever and would need to be at home near the restroom. The laxatives could continue to produce output for up to, say, eight hours or so, intermittently. I considered an ileostomy in my 30s, but never went through with it.
About a year and a half ago, my laxatives stopped working. It became ever more difficult to have any bowel movement at all, no matter what I did. I truly tried everything. I finally decided to go through with the ileostomy in March of this year. Friends, it was liberating. For the first time in 30 years, I did not have to carefully manage my schedule and work life around laxative days. I had ease of output. I learned very quickly how to manage my bag and other appliances. I was looking forward to traveling to Europe with my husband this summer. I had a perfect porridge-like consistency to my output, and while I was still being cautious with my diet, I was managing well.
About a week ago (hard to precisely reconstruct dates), everything changed. I began having a very hard time with output: it became much, much too thick—globules with no liquid coming out of my stoma that couldn't slide down my bag—and food would sit for hours and hours in my system with nothing happening. After about two days, it got so bad that I reached for the Miralax my surgeon had prescribed for emergencies. That basically did the trick, but the next day I had no choice but to do it again. It got so bad by day 3 that I drank fiber-free green juice—which I knew had a laxative effect on me—to try to propel food from my system before taking Miralax for a third time. The next day I woke up, changed my bag, and headed to the ER. I didn't eat anything. I strongly suspected I had no blockage because I had been using emergency techniques to keep from having one. I had to wait for hours and hours at the ER. I kept sipping on beverages, keeping well-hydrated, alternating between water and some electrolytes. By the time I got home some 14 hours later, I hadn't emptied my bag even once. There was some brown viscous fluid that eventually filled my bag up to a third of the way that was clearly the Ensure drink I'd had two days previously. They did a CT scan with contrast at the hospital, found no obstruction, and sent me home. By this time—because I'd been eating so little the previous few days—I had also lost substantial weight. I am naturally very thin and small and had lost weight in the aftermath of the ileostomy as I tested foods, etc., and learned to eat again. Anyway, the next day I had some toast and applesauce. Several hours later, nothing had come out. I drank some green juice, and after a while, a spiral of my toast came out with the applesauce, hanging down almost like solid poop. After several more hours, some of that was on the inside of the bag, but none of it had traveled to the bottom, and it was a very, very small output. I took pictures for my surgeon and sent them to her. She called me that night. The first thing she did was berate me for going to the ER. I explained that I did so only because I couldn't have any output without Miralax after three days. She said my picture looked fine: a very, very thick toothpaste coming out of my stoma. I explained that hardly anything came out, and it was only because of the green juice. She told me to eat more fiber and to make an appointment to see her in a few weeks. (I should add that nothing about my diet had changed during any of this). Now before my surgery, we had worried a little bit that perhaps my small intestine had also been compromised by the tumor, so we did a small bowel follow-through test before the ileostomy. I couldn't drink barium because it would make me too constipated, so we did an iodine-based contrast instead. It is not as thick as barium and has a slight osmotic effect. I was taking Motegrity before the surgery—which helps with peristalsis (helps propel the gut)—so I deliberately didn't take any the morning of the test so as not to affect the outcome too much. Results were fine. Now back to the present: when I talked to my surgeon on the phone—when she told me to try eating more fiber—I asked her if I could try Motegrity instead of Miralax if I needed to. She wasn't thrilled with the idea, but said yes. The next day—it had been at least 19 hours since I'd taken Miralax—I took a Motegrity. And things started working right away. Dinner was some pasta with a lemon butter sauce and maybe a third to half a cup of canned green beans. It came out way, way too thick, but a tiny bit of green juice took care of it. Today I took Motegrity again, ate some scrambled eggs and toast—and . . . nothing. After six hours, none of it had come out. I took green juice, and the green juice came out, but nothing else. And so here I sit. Tomorrow I have an appointment with the ostomy nurse. I will prepare a list of questions to ask her and also ask her to physically examine my stoma.
Final details: I am very, very small—my normal weight is 95-98, but I probably weigh in the 80s right now. My stoma is very, very small: near the very bottom size on the Hollister template. I have a loop ileostomy, not an end ileostomy. So the inactive stoma sits on top, and the active one on the bottom. You cannot see the opening of my stoma at rest.
And that's the full update. Any thoughts, suggestions, and advice are so very, very much appreciated.
