Hey everyone! Welcome back to the story right after I got back home from over two months in California!
Getting home was going pretty great! I had developed a new method to help myself feel more human – I called it “chewing and spitting.” As gross and weird as this may sound, eating is such a huge part of the human experience (just try watching television for a short time without watching commercials related to food or drink). My doctors have always agreed and cheered me on when I have found unconventional ways to feel as human as possible.
It worked exactly like it sounds. I’d simply get food that I wanted, chew a bite and spit it into a big cup. At first, I just did this at home but it got hard to do because so many social gatherings involve food. My friends began to realize that this was a thing I could do to fit in and had no problem with my silly method! It was really great to realize that my friends weren’t going to feel I couldn’t be a part of things with this new normal I was living. That had been a huge fear for me.
My other new normal was being on TPN twelve hours per day. The last I’d been on TPN, I was down to nine hours per day for three days a week. Sometimes it was difficult to remember I couldn’t just go visit my mom and decide to stay the night without planning it out. Most people’s planning to stay the night somewhere involves at least having their toothbrush but I had to plan to tote my backpack of TPN and supplies along.
While I was having fun getting used to my new normal, I really wasn’t thriving. I was still weak and unable to keep up for the most part but at least I wasn’t in a hospital… until about a month later. This was simply a bout of the flu, but when you get a temperature of 101, you’ve got to go to the hospital! This made my liver super-duper angry. My liver function tests were off any chart I’d ever heard of, which led to several days off TPN because they were afraid to administer it while my liver numbers were in the shape they were in. I watched a ton of Pretty Little Liars and got through it!
In early December 2013, Aunt Retta and I flew to Rochester, Minnesota, for an appointment with a motility specialist at Mayo Clinic. I was hopeful this visit would provide tons of answers and new ideas for what to do to get me well.
Our first hurdle was getting to Minnesota in December! Bad weather, airport delays and a flight cancellation/reschedule for the next day were how we spent our first day of travel. Our new flight was scheduled to arrive at 12:11 the afternoon of my 12:30 appointment. Whoops! We didn’t land until 12:30 and arrived at the clinic at 1:30, but they were able to squeeze our stressed little selves in to see this doctor. We did the best we could to get there. We actually ended up at that appointment with our bags still in tow and we are not light packers!
Mayo Clinic is a huge facility with thousands of doctors, nurses and technicians. It runs like a well-oiled machine! My experience there was that they scheduled as many tests as possible and got them done as quickly as possible (if everything co-operated). After my initial afternoon appointment, I had an itinerary print out of a zillion things. First thing on the list was a Gastroduodenal Motility Test at 7:00 AM the following day.
I am not absolutely certain about the particulars of this procedure, but it included slight sedation while they put an endoscopy, a wire and tube down my throat through the stomach and into the small intestine. Then, I was supposed to lie there for three hours while the tubes and wires recorded any activity that went on in my gut. After a few hours, I was supposed to eat a meal (with the tube and wire coming out of my mouth or nose, not sure on that either.)
The main reason I don’t know that much about it is because it ultimately did not happen. While they tried to put the tube and wire down multiple times, it kept looping up like a candy cane when it was in my stomach and would not go where it was supposed to in my small bowel. Fortunately, I was sedated through the multiple trials and doctors who tried to get it to work. My anatomy just would not let it happen.
There isn’t a replacement for this test but my doctor called for an MRI the following day. I had to drink as much of a half-gallon of contrast as possible. I got MAYBE 8 ounces down and felt absolutely miserable.
Most everything had been pretty normal stuff to me up until I met with a nurse who talked to me about possibly getting a tube placed in my stomach (G-tube) to use for draining. This was both a hopeful and terrifying conversation. It’s hard to imagine what it would feel like to have a tube hanging from your abdomen, so I had to struggle with that.
The following day, they ran more tests. I am not the best at remembering the exact names of medical tests, but if you’ve been through any of these, you probably remember the radioactive egg test. This was my first attempt at it!
Basically, you are given a radioactive capsule that is a marker to track where the food goes in your gut. Then, you eat all (or as much as you can) of a radioactive breakfast of two eggs, a piece of whole wheat bread and a cup of skim milk. First of all, GROSS and second of all, there was no way in heck I could down all of that food in the ten minutes I was given.
I felt like I was as full as I could get, so I was gagging but I got closer to finishing the meal than I expected I would. Then, they took images every hour to get a story of how my gut handled the food.
At noon, three or four hours into the test, I was given another gigantic meal – a fourth pound of turkey, two pieces of bread, a cup of Jell-O and a bottle of water. I only got the Jell-O down. I had been warned that if I threw up, the test would be void and would have to be done again. I sure didn’t want that to happen! Meanwhile, I had gone from a fairly flat stomach to about a seven month pregnant belly within the first ten minutes of eating.
They continued taking images, but moved the timing out to every two hours. I got to leave the clinic at 4 PM after being there since early morning. Since the food hadn’t moved, images were scheduled to be taken the following day as well. And surprise! The food still hadn’t moved and I had to go back the next morning! So even on the weekend, I was going to the clinic for one thing or another!
Over the next few days, the plan changed to placing a draining J-tube into the upper small intestine rather than a G-tube into the stomach. This is not typical, but thanks to the Gastroduodenal Motility Test not working, we learned that I have small bowel overlapping my stomach. Meaning there was a risk of potentially piercing my small intestine if they placed a G-tube, and that was not a road we wanted to go down.
Draining J-tubes are not typical because the secretions in that region of the GI tract are vital to maintaining electrolyte balance and lots of other components that keep you going. But since this was the best option available, it was our course of action. I was desperate. Desperate not only to feel better but potentially to be able to eat some foods and drain them out of this tube! Maybe I could stop chewing and spitting and even be able to administer medications through this new tube and absorb them! There was also hope that this would help eliminate the need for NG tubes during future hospital visits! This addition gave us lots of new possibilities.
My J-tube was placed two days before we flew home to Texas. The day after placement, I went to the clinic to have the dressing changed. I had asked the nurse not to show me the dressing because I would likely faint. I’m not messing around when I ask you not to do something because it’ll probably make me faint. She took the dressing off of my new J-tube and held it up for me to see and said, “Oh, it’s not bad!” I fainted right then and there. They had to call 911 to come to Mayo Clinic to take me to the in-patient Mayo down the street! I was in a lot pain and overwhelmed, but I was fine! I just didn’t need to see that dressing.
Now, I have a J-tube and I’m able to drain and decompress my gut! This was so nice after the eating and drinking tests we did while we were there! I was connected to a leg drain-bag constantly at this point to decompress as much as possible.
We were able to make it home for a fun Christmas with family!
I’m so glad we made the trip to Mayo Clinic and found an alternative that would hopefully keep me out of the hospital! While I was hopeful to get some really solid answers or some new diagnosis, it didn’t turn out that way. Ultimately, this trip put me on the path to finding the best situation for me.
There’s a lot more to tell! We are in December of 2013 so you will know where we are in the timeline of things!
See you again soon!