Finally, a diagnosis – severe gastroparesis

This last week has been a roller coaster of emotions for me. As I mentioned last week, after six weeks of being extremely sick, I finally received a diagnosis from my GI doctor. I have severe gastroparesis, an incurable disorder that essentially means my stomach muscles are paralyzed and don’t move food out of my stomach the way a normal person’s would. I haven’t told many people about my diagnosis, but I’m putting it out there now. I want those who care about me to understand what this disorder is and what I’m going thru and I want to educate others who might be experiencing something similar. Here’s my story:

Diagnosis

After a battery of tests over the past few weeks, it was finally a gastric emptying scan that revealed the disorder, a test that is the gold standard for diagnosis of stomach motility disorders. For the test, you eat a small meal of toast and eggs with radioactive tracer in them. A camera takes pictures as the food moves into and out of your stomach over a four hour period. Most people will digest this meal and have it leave their stomach in roughly 90 minutes. Gastroparesis is diagnosed if a patient still has 10 percent or more in their stomach at the four hour mark. I had 80 percent remaining at four hours, which puts me in the “severe” category, meaning my stomach is barely functioning at all.

This diagnosis goes a long way to explaining my symptoms – sharp abdominal pain on the upper left side, extreme nausea, bloating, constipation, loss of appetite, fatigue … it feels like the worse case of the flu you’ve had times six weeks with little relief. When it first started, I thought it was my appendix and I waited nearly a week before going to the ER. There, a CT showed a ruptured ovarian cyst. They gave me pain and nausea meds and had me follow up the next day with my OB/GYN.

When I saw him the next day, he told me I could expect to feel unwell until my next menstrual cycle as that was fairly normal with ruptured cysts. Over the course of the week, I continued to get worse. I called his office at the end of the week and his nurse assured me this was not normal and recommended I return to the ER to check for a small bowel obstruction. I went back to the ER where another CT scan showed nothing remarkable. They thought perhaps it was a gastric ulcer, started me on Nexium and sent me home with more pain and nausea meds and a recommendation to follow up with a GI doctor.

I saw the GI doctor early the next week and was so sick I needed IV fluids and nausea meds while at my office visit. He scheduled an EDG, or upper endoscopy, to look at my stomach later in the week. I had the scope and my stomach came back healthy – no H. pylori infection and my biopsies for gluten insensitivity were negative. Next, the GI doctor wanted to rule out gallbladder issues, so he sent me for an ultrasound of my liver, gallbladder and pancreas, all which came back normal. At this point, after doing a lot of research on my own, I was fairly certain I had gastroparesis. I suggested this to my GI doctor and he then ordered the gastric emptying study which eventually led to my diagnosis.

Options

I was able to see the doctor last Friday to discuss my options. He said my case was very severe, especially for someone my age and considering the amount of pain, nausea and trouble maintaining my weight I was having, he wanted to refer me a GI motility specialist at a much larger hospital about an hour away from where I live. I’m currently waiting for the larger hospital to review my medical records and call and to set up my first appointment.

In the meantime, my GI doctor gave me more nausea and pain medication and set me up with our local hospital to receive IV fluids and nausea meds whenever I feel like I need them, rather than having to go to urgent care or the ER. I’ve been going there every couple of days and the infusions really do help me feel a little better for a short while.

How I’m feeling

I’ll be honest, this diagnosis scares me. There’s a chance I’m going to need a feeding tube in order to get the nutrition I need and I’m not quite sure how I feel about that. Much of my future is unknown at this point and that’s very unsettling. I’m trying to remain hopeful that my new GI specialist will have a treatment that helps reduce my symptoms and improves my nutrition so that I can get back to my previous level of functioning. For someone who’s been relatively healthy her whole life, this is a curve ball I wasn’t expecting.

I miss having energy to do things I love – like blogging and photography. I miss having energy to play with my kids. Some days I’m so exhausted they have to go to daycare because I cannot take care of them while Mike is at work. I miss being able to pick Ella up and carry her all over. I miss days of their lives because I’m so tired I cannot get out of bed. I miss simple things like being able to keep up with all the housework and laundry. I miss quality time with Mike that isn’t spent wondering what our future holds. I miss working and all my co-workers. I love my job and it’s so much a part of who I am. You might wonder if I miss food, but strangely, I don’t.

I am continuing to lose weight, having lost about 20 pounds since getting sick. I am tired all of the time and if able, will sleep 20 hours a day. Simple things, like taking a shower, are exhausting. I don’t have the energy or the strength to hold my arms above my head to shampoo my hair. I have to budget my energy for things like that. Taking a shower might mean I’m wiped out for the rest of the day. Lifting Ella in and out of the car is a struggle. Mike has been wonderful about taking Ella to and from daycare so that I don’t have to do it often, which I so appreciate.

I read something about chronic illness and something called the The Spoon Theory, which was created by Christine Miserandino who suffers from Lupus. It’s very accurate. Read more about the Spoon Theory here. I’m currently trying to figure out how to best manage my energy and spoons. There’s a lot of trial and error involved.

More info

I’m currently reading Living (Well!) with Gastroparesis: Answers, Advice, Tips & Recipes for a Healthier, Happier Life by Crystal Saltrelli who has had the disorder for more than 13 years. It’s a lot to take in and I’m not to the point where I can eat solid food, so the recipes aren’t helpful … but maybe I’ll get there eventually.

If you’re wondering what it’s like to live with gastroparesis day-to-day, The Mighty has an article this written by patients, check it out here. It’s very accurate.

I think when you’re faced with a serious health issue that is going to impact the rest of your life, there’s a sort of grieving process you go through. I’ve pretty much been thru denial, anger, bargaining and seem to be stuck between depression and acceptance. Some days are easier than others. I’m trying to take it day by day. I’m so thankful for the good days … the ones I have enough energy to interact with my family and maybe pick up the camera and take a few pictures. I try to give myself grace during the bad days, take care of myself without feeling guilty and know that eventually another good day will come. It’s a process and I’m learning everyday.

I’ll continue to post updates as I have them as well as more informative posts about gastroparesis for those who have the same diagnosis. And don’t worry, as my energy improves I’ll be back to posting fun things about blogging, photography, tarot cards and pictures of my adorable kiddos!

Tell me, how do you cope with a chronic condition? Do you have any tips and tricks you can share with me? Leave me a comment and let me know!



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24 Comments

  • Marette Flora

    Wishing you all the best. I’m sending you positive vibes.

    • Jen

      Thank you so much – I appreciate it!

  • Carrie Ostergard

    Sending prayers to you. GI problems are no joke and are so hard. Been dealing with them with my 12yr old. Hoping things get better for you

    • Jen

      Thank you so much, it’s been a struggle … looking forward to moving forward with some sort of treatment.

  • Tayler Morrell

    That sounds absolutely terrible! I remember seeing a short documentary about it on facebook. Hope you get better!

    • Jen

      Thank you. It’s not something I’d ever heard of before I got sick and I’m an RN (worked med/surg for years and never came across it).

  • Victoria

    Thank you for sharing your story, I hope you are able to find a balance and some good supports soon so you are able to get into a routine that fills you up and doesn’t just take spoons away.

    • Jen

      Thank you so much … I’m all about conserving the spoons!

  • Holly

    Check out a procedure called G-POEM. My Drs are talking to me about doing this procedure here in Atlanta, GA at Emory University Hospital on Clifton Rd. Surgery procedure done by Dr. Cai Gastroenterologist. They say it’s working for most of his patients who have Gastroparesis. Hope it will help you.

    • Jen

      Thank you for the information, I’ll check it out!

      • Holly

        You are welcome. I hope it is an option and helps you.

  • Gge

    This disease sucks. I had a botched nissen fundoplication, which I only agreed to have because I literally almost died from blood loss. So the 2nd time ended up with a very invasive surgery called a Collis Nissen Fundoplication. I had many adhesions from the failed NF, then they had to undo what the first surgeon screwed up which required cutting off part of my stomach and was converted to an open surgery- all lap incisions were opened, plus a new one for a G tube but still needed to cut from breastbone to belly button. In the process my vagus nerve was damaged. AND THEN (said in a dramatic voice like my 8 year old does), said child lept onto my abdomen 2 months after the surgery and tore open the internal sutures so I have a 4″ gap in my abdominal wall. So I can see my intenstines protrude, I look 5-8 months pregnant on a given day. The fix would be abdominal reconstruction but I’ve decided that unless it’s life or death I won’t go under the knife. So my entire digestive process doesn’t work. I have to take 2-3 double doses of miralax because without an abdominal wall I can’t bear down – gross I know. I’ve lost an ungodly amount of weight and can no longer work. I not only can’t work but can’t be the type of mom I wish I could be. Hard to have energy when unable to eat and throwing up all the time right? My mantra is that it could always be worse! So keep on keepin on!

    • Jen

      So sorry to hear of your story but I love your attitude! It’s always nice to meet more people with this disease – thank you for stopping by!

      • Ginny

        Being able to literally see the wavy outline of your intestines and how they move across my skin as gas pushes through kind of feels like the type of sensation I had while pregnant. It’s totally gross and weird but I find it fascinating though it’s dangerous. I’m at an increased risk for them to twist and if I took a blow to the abdomen it could definitely put my life at risk. So I choose to look at the belly and refer to my alien baby in there and how many people can actually touch their organs and watch their heartbeat on their tummy?

  • Kimberly Theodore

    So sorry Jen 😢, I was hoping for a better diagnosis. Living with chronic gut issues of any kind is a life altering event. Having lived with my IBS, i find it more difficult to deal with as I age. I’ve had multiple attacks over the last 2 weeks and I totally get the exhaustion issue. Some days of pain make me just want to hide under the covers and not come out. I have things to plant outside and I’m so freaking frustrated that I can get to them, that my depression worsens…but, you have some things going in your favor, much like me. You have a wonderful and caring hubby for support. You have a family network of support, and, you’re a nurse (you get it). I can give you a tip on the nausea (very old but effective trick). Flat cola syrup andsuger are friends to the tummy when it’s upset. I have Dad buy mea 2 liter bottle of regular coke and leave it open and out on the counter (room temp). I fill a glass 1/2 full with Coke and add teaspoon of sugar. Look out for the eruption! The spoon of sugar will eliminate all of the carbonation. Stir vigorously after it settles back down to get rid of any residual carbonation. Then just sip at it as you can keep it down. It will give you some sugar for the nausea and add a couple of calories. I’ve been living on this regime now for months, since my IBS and nausea have become a big problem and it’s been a real blessing since I just cannot function at all if I’m nauseated 🤢!
    Sorry so long but I hope someone else might benefit from my trick as well.
    I love you and I hope you feel better soon. Any options for a surgical fix? Keep Dad and me informed. He’s been quite worried about you. Me too 😢❤️😘

    • Jen

      I’ll send you guys an email. Love you both! 🙂

  • ashley peavey

    Sending love and prayers. <3

  • Alison - Celebrating Sweets

    My mom was diagnosed with gastroparesis several years ago. Most days are good but some days she struggles. I hope that you start feeling better. Thanks for sharing your story.

  • Ashley

    I’m so sorry to hear all of this! I wish you the best! You are in my thoughts and prayers!

  • Lisa Clark

    I’m sure the diagnosis is scary but at the same time, it’s the first step toward getting better and finding answers. Wishing you the best!

  • Vicki @ Babies to Bookworms

    I’m so sorry you have to deal with this. Sending thoughts, prayers and positive vibes your way!

  • Corey | The Nostalgia Diaries

    Sending healing thought and lots of prayers your way!

  • rachel | itsahero.com

    I’ve been thinking about you and I’m so sorry to read this — but I’m also happy that you finally have some real answers. I’ll keep thinking of you and sending positive vibes, friend. xo

    • Jen

      Thank you – it helps some having an answer. Thanks for the positive thoughts, I appreciate them! Hope you are doing well!

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