July 21st. I will never forget that date. It began with the surgical placement of my much needed J-tube, and then spiraled downhill to places I could not have imagined. The plan was for me to spend Friday night in the hospital, then go home Saturday. Of course that did not happen... As usual, my pain was very high after the surgery due to my fragile and inflamed nerves. Friday and Saturday I received Dilaudid only, each dose as close together as possible. Friday evening my face was itching, and by nighttime my face, neck, and chest were itching. Apparently the Dilaudid was causing a reaction, so from then on I had to have Benadryl with each dose. By the time night rolled around (meaning the middle of the night) my bladder was just not working. So I had the delightful experience of having a straight catheter. For those of you who don't know what that is, it's a one time, temporary catheter to empty the bladder. Oh and then I had that wonderfulness again Saturday night. And I still ended up with a horribly painful UTI. For days I had to have bladder scans and go to the bathroom every couple hours to make sure things were working. Definitely something I was not expecting when having abdominal surgery, but then again I do have lyme so things tend to go crazy. 7am Saturday morning I threw up. It came out of nowhere and caught us all by surprise. So lovely. At least I got a fresh hospital gown out of it. But this was just the beginning... All day Saturday I was throwing up. I don't even know how many times, it seemed almost constant. My nurse was wonderful, she did as many things to help that she could think of, but I just couldn't stop throwing up. I was so dehydrated even with the IV fluids they were giving me. My nurse consulted multiple times with the surgical PA on staff that day and they were trying to figure out what it could be. They were literally struggling to keep me from having to have an NG tube (tube that goes through the nose into the stomach) to suck the bile and such from my stomach because it wasn't going through. My intestines didn't seem to be working well, if at all. They were also trying to keep me from needing a more permanent catheter for my bladder. Things got so bad I could barely stand. Finally the surgical PA decided we should try hooking me up to my tube feeds - starting at a very slow rate of course. This was at 7pm. So for twelve hours I went through that torture with no relief. Then the feeds somehow began to wake up my intestines and things got "better". I wasn't throwing up constantly anymore. But I was still beyond the point of weakness, my body felt like it was collapsing. Saturday night I couldn't walk to the bathroom, even with help. I was shaking just standing. So they brought me a commode and put it right beside my bed and that's what I used for that night and the next day. Sunday was a much better day for me. I was able to "eat" some apple juice and chicken broth. I was still in a lot of pain though so thankfully I was able to receive some Dilaudid even though they want to wean you off it as soon as possible. The oral pain medication I took for the next 4-5 days was really strong as well. It had to be, the pain was so high I couldn't handle it. When Sunday evening rolled around I was back to throwing up again, but this time other symptoms began that continued throughout the week. I had horrible heartburn, absolutely awful. It was searing pain the entire way from my stomach to my mouth, and I still had to take my meds with this going on. I also had episodes of extremely painful gas that would not go away. Basically I would fight the heartburn until it would finally cause me to throw up. Sometimes the time in between lasted for hours. Most of Monday and all of Tuesday and Wednesday I ate next to nothing and threw up multiple times a day. There was nothing in me. I had a fabulous nurse on Tuesday that really tried to figure out why these things were happening. She pushed for an x-ray to see if I had a blockage that wasn't allowing my stomach contents to move through. And yes, that does happen with gastroparesis, but these symptoms were extremely severe and something I had never experienced before. (Even though my medical doctor at the hospital kept saying that was the issue) In order to have the x-ray I needed to stop my tube feeds, and that actually made a big difference in how I felt for several hours. My x-ray was clear, which was great, but the ride down to radiology on the gurney was terribly painful. It was determined that we wouldn't start my feeds again until the following morning. On Wednesday my on-staff medical doctor told us that I was now anemic and my liver enzymes were elevated. It was so difficult having one thing after another pile up as I continued to struggle with the horrific symptoms I already had. My UTI was extremely painful, my surgical site was still painful even on the strong oral medication, and I was having episodes of terrible back pain. I struggle with back pain on a daily basis anyway, but add on the hospital bed and the fact that I had to sleep sitting almost completely upright on my back because of the heartburn...it was awful. Mom had to literally help massage my back so the muscles would relax and the pain would lessen enough so I could sleep. Also, every time I threw up it hurt my stomach and surgical site so badly; there was just so much pain everywhere. Wednesday, my doctor wanted me to have an abdominal ultrasound to rule anything else out, so off I went again on the gurney. The ultrasound was clear, which was good, but we were still left looking for answers. Thursday was kind of a turn around day for me. We started my feeds slowly and took 24 hours to build up to the rate they wanted me at. My body was still very weak and I was still battling episodes of heartburn/nausea. But I was better. I was even able to walk down the hallway a little with my physical therapist. (in prior days we could only make it to my bathroom) Thursday was pretty crazy because tons of doctors came to see me. Finally someone had let my GI doctor know what was going on, so his PA came and talked with us which was so helpful since she obviously understood the most about my situation. My dietitian also came and we talked about whether or not this formula was causing problems for me and if we should change it. She was very good and listened to us, but didn't think that was the issue and wanted to stick with this one to see how I tolerated it going forward. I was able to keep more "food" down on Thursday, which was wonderful. All of us, including the nurses, celebrated when I was able to finish a popsicle. I was still battling the heartburn, but only threw up once or twice in those 24 hours. Then Friday came. I was still incredibly weak, and struggled with my symptoms, but they were much better. I even took a "sort of shower", (with help of course) I was so ready to go home, especially since I was feeling better. Although earlier in the week I really did need to be there. When my surgeon saw me on Friday and had been given a summary of how I was doing, he said I was clear to leave. Since he was my surgeon, and therefore my attending doctor, that was the official word. After we got the call that my feeding tube supplies and feeds would be delivered to our house soon, I was released to go home! Even though I was home, Friday night, Saturday, and especially Saturday night (I threw up twice) were still really hard. But when I wasn't having those awful episodes, I was doing so much better. After I threw up during the middle of Saturday night, we slowed my feeds down from 40mL/hr to 20mL/hr. That made a big difference in how I felt. And I've continued to improve! Since Saturday I have had no nausea or heartburn. We bumped my rate up to 30mL/hr on Monday, but that caused awful gas and pain, so I slowed it to 25mL/hr. Apparently my body takes a long time to adjust. We are hoping and praying I can get the rate back to 40mL/hr and there isn't a problem with the actual formula I'm "eating". It's quite tricky...
Being a patient on the surgical recovery floor was a huge blessing because I was able to receive the type of care I needed. I am very thankful for each of the nurses and assistants who took care of me. I went into the hospital weighing 99lbs and came out weighing the exact same. That is a scary low weight for me, (BMI of 15) so please pray that I can gain weight and strength using my feeding tube. Thank you SO much to everyone who prayed for me last week, for those who visited me in the hospital, and for those who gave me flowers and cards. I am overwhelmed by the love that has been shown to me.
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I FINALLY have a surgery date! This Friday, July 21st, I will have the procedure to place my J Tube.
This feeding tube will be placed via an incision above my belly button and will be inserted into my jejunum, the second part of the small intestines. Then I will have an external tube where I can infuse tube feeds. These feeds will contain protein, fat, and other nutrients, things that I have not had in a long time. Living off juice and carbs is not good long-term.... Right now I am so grateful for the opportunity to have this tube so I can focus more on healing and figuring out my gastroparesis. After I have recovered from the surgery and have my feeds situated, we are going to get back on lyme treatment right away. I can feel myself slipping and experiencing more lyme symptoms than I have in quite a while. I'm still confident Dr J and my DC team will help me get back to where I was and then continue to get better than before. Please pray that this surgery goes smoothly and I recover well. I will be staying overnight which I am grateful for since it's an invasive surgery and they can help manage my pain. Please also pray that my pain doesn't get like my gallbladder surgery recovery and/or that we are able to figure out a plan. Thank you so much for your prayers! Here is one of the reasons I really need this feeding tube: Gastroparesis is a condition that affects the stomach muscles and prevents proper stomach emptying. And I have it. I have suffered with its symptoms since March, and was finally diagnosed by my gastroenterologist just over a week ago. The diagnosis for this disease is based on results from the Gastric Emptying Study. Of course I couldn't eat the standard egg meal since I'm allergic, so I had the test with oatmeal. (This test was so miserable: I had to eat a full meal and it messed my stomach up for the rest of the day.) The results from my GES came back like this: a normal person would move the meal through their stomach within 30-60 minutes. Mine took 139 minutes. I must say I did feel very validated when we got those results. Although I knew my stomach was bad it is always nice to have a test show what you feel. So then we went back to my GI's office and he started me on the only safe medication that can help stimulate the muscles of the stomach to move: an antibiotic by the name of Erythromycin. I took one pill at before bed as instructed and one pill 30 min before breakfast the next day as instructed. OH. MY. GOODNESS. I have never had such a painful, horrible, awful reaction to medication. I had severe cramping in my stomach that lasted for hours before coming down to a manageable level. It was all just a horrible mess. I was practically crying and told my mom there was no way I was taking another pill. Just the one from the morning left my stomach in shambles for the rest of the day. I was beyond miserable. So that medication was definitely not an option. Here is the new plan: Anna is getting a feeding tube. A surgically placed feeding tube called a J Tube. It will go into my jejunum, which is the second part of the small intestine. This tube skips my stomach entirely and all the food, calories, and nutrients will go straight into my intestines. Below is a rough diagram of what it will be like: I'll be taking care of and managing my own feeds at home, which will seem like a lot to learn at first, but I'm more confident about that after mastering my Powerline (which is quite a lot). I met with my surgeon yesterday and we talked through how the surgery would go. He said it would be more invasive than my gallbladder removal because he has to actually cut me open in order to place the tube. I will stay the night at the hospital, and it looks like the next day we will learn how to care for my tube, and a dietitian will come by and help us with the feeds.
Now I just need this surgery to be scheduled as soon as possible! Please pray for that and also that I can last in the meantime without going even more downhill. I haven't had any lyme treatment for two months, and we can't keep waiting much longer. But right now I'm just excited and focusing on the fact that I am getting this feeding tube and the pieces are finally falling into place. |
Anna RoperStay connected as I go through this journey with Chronic Lyme Disease. New here? This is a great place to start.
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