Gastroparesis: An update and a word of caution

Gastroparesis: An update and word of caution

I realize it’s been a little while since I posted about my gastroparesis and how I’m doing. I had something significant happen I wanted to put out there in the hopes that sharing it might prevent the same thing from happening to someone else, or someone who is going through what I went through recognizes this is what is going on with them. After all, that’s why I write here, to help others and make them feel less alone!

Medication

I started taking Motilium, a drug used to increase peristalsis in the digestive track, towards the end of July. Within about 10 days, I was able to eat solid food and dramatically increase my liquid intake after more than three months of living on nothing but sips of Coke and Enusre when I didn’t throw it back up as well as my daily IV fluids. I’ve found some “safe” foods that I can eat that don’t make my symptoms worse and they’re all healthy things like Greek yogurt, fresh mozzarella cheese, cherry tomatoes, crackers, fish (salmon and whitefish). I still wasn’t able to drink plain water without feeling nauseated, so I stuck to my trusty Coke which helped my nausea for whatever reason. I still had my implanted port and was running 2L D5NS a day, one slowly overnight while a slept and the second in the afternoon. Within a few weeks of taking the Motilium, I no longer needed my IV nausea meds and was off all my pain meds. The only thing that was unusual was I developed high blood pressure for me, like 140s/100s, at the beginning of August. My blood pressure has almost always been 90s/60s and I pass out if I stand up too fast.

Return to work

I was doing so good that my doctor let me return to work the third week of August to my job as a labor and delivery nurse and I was so excited to be back. I was still very malnourished and weak but it’s where I wanted to be. I went back for three 4-hour shifts a week but due to census and staffing only worked about two shifts a week or 8 hours total. It definitely showed me how de-conditioned my body had become over the last four months and I was exhausted after working those four hours. I’d come home and run IV fluids and sleep.

Getting sick again

Within a week of returning to work, I started not feeling good. I chalked this up to working a physically and mentally demanding job and wondered if I’d come back too soon. As I continued to work, I felt worse and worse, both at work and at home. So, I kept trying to eat as healthy as I could and ran my IV fluids as ordered.

Instead of feeling better, I only felt worse with each passing day. I was very weak physically, unable to even do two rounds of CPR in my refresher class. I could no longer carry Ella, my two-and-a-half-year-old, across the parking lot or up or down the stairs. Everything left me dramatically short of breath, from walking to my car to climbing a flight of stairs. I only felt okay sitting down. Then, as more time passed, I noticed mental changes, especially while at work. I couldn’t concentrate on a task for more than a few minutes. I couldn’t remember how to do things I knew like the back of my hand. I worked a whole shift and forgot to even look if my patient needed meds during the time I was there and didn’t realize it until right before I left. I knew I didn’t trust myself to take anything besides a very basic, routine patient assignment and that completely freaked me out because in the world of labor and delivery, you need to be ready and prepared for anything because things can change so quickly and seriously.

I also noticed I was having great trouble driving, from nearly getting into accidents because I didn’t see other vehicles, to anxiety about driving in general. So, I stopped driving unless absolutely necessary and when I did drive, only took the familiar, safe routes I knew. I was also having great trouble remembering the names of common, everyday objects. I stared at a clothespin for 15 minutes before I could remember what it was called.

After much thought last week, I realized I was in no condition to be working as I knew I couldn’t live with myself if something happened due to my mental condition and inability to recognize it while it happened. And this broke my heart because more than anything, I wanted to be back at work. Being a nurse is so much a part of who I am and labor and delivery is my calling. I called my GI and demanded an appointment with him for last Friday to discuss where we’d go from here. And I called my PCP and asked for something for the horrible anxiety I was having.

Seeing the doctor

I met with my GI on Friday afternoon and wrote down a list of all my physical and mental symptoms because I didn’t trust myself to remember everything. I told him about my fatigue (despite an increase in my Ritalin), my weakness, my difficulty breathing, especially lying down, my chest pressure/tightness, my headaches and mental confusion, the severe bone pain I’d started experiencing the past week. My blood pressure in the office was 170/110 and would not go down with rest.

I explained to him what I’d been eating the last seven weeks and he agreed that it sounded healthy. However, based on my symptoms, he was concerned I was severely malnourished because of how long I’d gone without eating prior to starting the Motilium. So, we talked about the possibility of getting a j-tube (a tube that goes through your abdomen into your jejunum for nutrition. He was hoping to avoid that prior to me going to Mayo in Rochester, Minn. for test/procedures and a treatment plan. So he put a call into Mayo for an emergency appointment, messaged my PCP about my blood pressure and sent me to the lab for a ton of lab work with the understanding that if anything critical came back, he’d admit me to the hospital and place the j-tube over the weekend. He told me he was happy I had my port and that it was my lifeline and to continue to run fluids while I waited for my lab work to come back. He said I was not safe to be working and wrote me off work for the next month.

The weekend

Friday night, I seriously felt like I was dying. My blood pressure was ridiculously high and you could see my heart beating in my chest. My pulses were really strong and my jugular veins were distended. I felt like I couldn’t breathe at all and I couldn’t sleep lying down. I could barely walk. I sent my husband to the store to get a blood pressure cuff so I could monitor my blood pressure at home. I continued to run my IV fluids as ordered and switched from eating solid food to drinking Ensures to makes sure I was getting the most nutrients I could.

Saturday, my labs came back … all on the low end of normal. Which started me thinking I couldn’t be feeling this way due to malnutrition or they would have looked worse. I thought perhaps I felt as bad as I did because my blood pressure was so high. It stayed in the 170s/110s all weekend, despite me stopping my Ritalin and the domperidone for a few days to see if either of those were causing it. I had many moments over the weekend where I considered going to ER because I felt so bad, and if you know me, you know I have to be convinced that I’m going to die before I go to the ER.

My “Ah-Ha” moment

I toughed it out all weekend with plans to call my GI when I woke up Monday. But, I couldn’t sleep because I couldn’t breathe lying down. Then, while lying in bed at 1 a.m. Monday morning, it came to me. I knew what was wrong with me and it was an easy fix. Everything, with the exception of my bone pain, could be explained by fluid volume overload!

What nobody, the doctors or myself included, had considered was that my oral intake dramatically improved at the end of July and I was drinking about 3L of liquids a day. I was also giving myself another 2L of IV fluids a day. So, my fluid intake ranged from 5-6L a day. The average female adult at my weight should intake between 1.5-2.1 liters of fluid a day. So I was over this number by several liters a day. Multiply that by seven weeks and you’re talking some very serious fluid volume overload.

My port was not my lifeline – it was slowly killing me.

Recognizing what was going on, I realized I had a number of other symptoms of fluid overload like ankle edema, facial edema, and weeping skin. So, first thing Monday morning I called my GI. After many messages back and forth with his nurse, I finally asked him to call me directly. He did and agreed it was likely I was in overload. I wanted a diuretic to help get some of the fluid off but he wouldn’t prescribe one because he was concerned about hypokalemia (low potassium). He told me to stop the IV fluids and that the chest pressure/tightness/difficulty breathing would get better in a few days once my kidneys processed all that fluid and removed it.

Two days later

It’s now two days later and I feel SO much better. I am not short of breath or having any difficulty breathing, even lying down. My jugular veins look normal, you cannot see my heart beating in my chest. My edema is almost gone and my weight is down by five pounds. My memory/mental functioning is so much more clear and I drove to the store without and overwhelming sense of panic and doom. My blood pressure is continuing to come down. It’s about 140/90 now. And those things will just continue to get better with time, provided I don’t run any more IV fluids.

I told my GI I’m just going to drink what fluids my body tells me it needs, no more and no less. I’m not using my port at all. My vitamin levels are a little low, so I will be getting B12 injections to help with that. And we’re repeating all my labs in a week to see what they actually are when they’re not diluted by excess fluid in my system.

Hope

So, for the first time in a very long time … I have hope. Hope that I can manage my gastroparesis with the Motilium and healthy eating and go back to doing the things I love – spending quality time with my family, work, photography, blogging. For now, my GI wants me off of work until I figure out how I’m doing without the IV fluids and we see what my labs look like, but I’m hopeful I can go back sooner rather than later.

I do have an appointment at Mayo at the end of October and hopefully that will give me more answers and a better idea what the future hold for me with this disorder. I’m also researching an independent treatment facility in Mexico that focuses on the body as a whole, not just the GI tract. The good news is that I have some options.

I’m not dying, just so long as I don’t run IV fluids while I’m able to eat food and drink other liquids. And I cannot begin to tell you what a relief that is. A part of me is shocked that I didn’t recognize such an easy nursing diagnosis – one that I have studied endlessly in school – even while it was happening to me, but I’m going to chalk that up to the confusion I felt being so overloaded I couldn’t think straight. And another part of me wonders just how long it would have taken the doctors to figure this out as well … and that’s a bit frightening.

 

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8 Comments

  • Brittany K

    I hope you start feeling much better. What a scary thing to have to deal with!

    • Jen

      Thank you so much – finally feeling like I’m on the mend! Hope you have a great weekend!

  • Vicki @ Babies to Bookworms

    I’m so glad you figured it out and are feeling better! Sometimes the things that we study can be the hardest to diagnose ourselves or our loved ones with!

    • Jen

      Thank you – yes, why is that? I think I would have recognized it in someone else … I just couldn’t pull it all together for the longest time myself! Hope you have a wonderful weekend!

  • Emily

    Wow. I’m so sorry you’re going through this! It sounds like quite an ordeal, but hopefully things are improving!

    • Jen

      Thank you, yes, I’m feeling SO much better now! Thank you for reading and commenting – having a great weekend!

  • Samantha Kuzyk-Raising Twincesses

    So sorry to hear about your health struggles. Wishing you all the best!

    • Jen

      Thank you so much – things are in an upswing now! Have an amazing weekend!

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