Welcome back! Alright, so the J-tube is placed! What else could ever go wrong?
While getting used to my new normal with my J-tube, I had a lot of trouble. It was great in the sense that it helped my tummy stay a little flatter than it had been and it made it to where I was able to eat a pretty full liquid and soft food diet without too much trouble. But it was so hard to learn how to tape it just right so it didn’t hurt and to find cute clothes that were comfortable and didn’t make it obvious that it was there.
I also had a hard time accepting that going to the doctor now didn’t mean cutting back a day of TPN and going to Red Lobster with my dad. Most of my doctor appointments were pretty frustrating because there was usually some talk about possibly having to take me off TPN due to my liver numbers being so elevated.
I was also back to dealing with numerous healthcare people on a daily basis about supplies or labs or any of a number of other issues. It was so frustrating to go back to this. I went back to working part-time at the CPA’s office and while I was there for my three hours a day, someone would call asking me to call them back when I got the chance. I would make a mental note to call back and before I could even finish mentally noting the call, they’d call again. It was almost as if these people couldn’t fathom that I had a life outside of TPN and medical supplies.
There was some good news though! My weight was finally above 100 pounds! This was great news and meant my body was accepting the TPN as nutrition and I was able to eat a little and stop my chewing and spitting for the most part! If I wanted a bite of a cheeseburger or something a little heavy, I still resorted to that method.
About a month later in January 2014, all heck broke loose and I had my first bout of being unable to drain my J-tube. I was able to flush it just fine (meaning things could go in) but nothing was coming out. I had a lot of pain and the nausea and vomiting were overwhelming (because nothing was getting past my stomach and down to my jejunum to drain out of the J-tube.)
I finally went to the hospital after dealing with this for a few days. They admitted me and placed the one thing that I had thought I’d eliminated from my life once and for all – an NG tube! Here we go again. At least I had the routine down pat, two doses of Ativan, size 12 French NG tube, and as gentle as possible. After draining 2.5 liters out of my stomach, the nausea finally eased up!
Through imaging, they were able to see that the section of gut between my stomach and the J-tube had collapsed on itself and just wasn’t letting anything through. A few days later after being on suction 24/7, my J-tube finally let up and started draining again! Hooray! My belly was flat and things were going pretty well! So I got to go home just in time for the Superbowl! I still had lots of pain at my J-tube site, though it didn’t appear infected.
The night I got home, my sweet Nurse Pat came to change my PICC dressing. She saw how much pain I was in and we came up with the plan that I needed to have Aunt Retta come and get me so I would have someone with me during these rough nights since my dad was working nights. I ended up living with Aunt Retta for much of the rest of this story.
A month went by and I was admitted to the hospital again because my J-tube was not draining. Crazy thing was my belly wasn’t bloated at all this time! And I was still vomiting an atrocious amount! After four days in-patient, my gut finally let up and I was draining through my J-tube once again.
I mention the part about my belly being flat because for all these years, I had imagined a flat belly all the time. I thought that was the ultimate goal to making me feel better. While having a flat belly helped with the extreme discomfort, it did not necessarily mean that things were going great. Looking back, I think the loss of the naturally produced fluids from my intestine through draining my J-tube was what was keeping me down. Even with TPN on my side, letting all of those vital juices out constantly was extremely draining (pun intended.)
I was doing well in other aspects though! A woman had made me a beautiful PICC cover while I was in California, and one of the best signs was that I tried to put it on and it no longer fit! I was actually bulking up some!
Another month went by and I was admitted again with the same symptoms. This time, they ran a CT scan and noticed that there was a twist in my gut right around my J-tube. This was likely the reason it was not draining. I refused to get the NG tube placed and lied about how many times I’d thrown up. I was so fed up with being in the hospital almost all the time and getting NG tube after NG tube. I decided I’d rather not go through having one placed this time and see if my gut would let up soon enough, and it did after a few days.
I’d talked with my doctor in Dallas and she talked with my doctor at Mayo Clinic and we decided I needed to travel back to Minnesota to be seen there again. I was scheduled for appointments on April 25, 2014. Would I make it to that date without more hospital visits? Of course not!
The next trip to the hospital was because I was extremely faint most of the time. I was pretty much unable to walk myself to the bathroom without feeling like I needed someone outside the door to listen for a thud if I fell. I went to the hospital and only got two bolus bags of fluids and was sent on my way after my vitals were stabilized.
At 7:00 the next morning, I called my mom. I had to pee so bad (getting about two liters of fluid over the nighttime hours will make you have to go pretty bad) and was scared to get up and go without having anyone around. I just wanted her to stay on the phone with me in case something happened and my brother was sleeping too hard to hear me fall.
Good thing I made that call! The next thing I knew I was waking up in the laundry basket behind the bathroom door. I fainted and fell into it as I tried to get back to bed as fast as I could!
My mom called my neighbor and my little brother. They were unable to get to me in the bathroom because my laundry hamper bed and I were blocking the door. Eventually, I came to and made it to my bed while 6 paramedics helped me find my slippers to wear out to the ambulance that was there to take me to the hospital again.
I was there for just a day or two before I was sent home. Then, I broke my record for hospital visits in a week by going again just a few days later with a fever! It turned not it was not a line infection, thank goodness, but you’ve always got to be cautious!
After all of these many hospital visits, I was finally going to Mayo Clinic for the second time! Aunt Retta went with me again and we were excited to talk to a geneticist this time. I’m looking forward to seeing you here again soon!