Gastroparesis and IBD – An Unlucky Combo

Last updated: March 2022

Since getting my PICC line and coming off total parenteral nutrition (TPN) in June, my body has been declining rapidly. I’ve chosen to try and keep things private, but it’s pretty clear when people run into me I look a bit different. Malnutrition comes with a lot of side effects other than just weight loss.

Cognitive issues and falling

I fall a lot. Cognitively, I cannot remember a lot and have a hard time forming sentences on really bad days. My heart rate has always been 25-35 each time I’ve been told to go in, per my new nurse. Because of my extremely low blood pressure and dangerous heart rate, I’ve had to go in to make sure I’m not in a cardiac arrest zone. I can’t explain the feeling of what it feels like, but I feel like I am only performing at 25%. I have to lay flat a lot, due to the falls.

I am unable to swallow any meds and can hardly take liquids, much less my own spit. I have trouble balancing and walking, so I have been using assistive devices. (This is still terrifying because I could still potentially fall really hard into the walker if I have no control or vision.) I took my dog out one night and knocked over everything on the patio, terrifying her. Just the other week I fell while my boyfriend was outside and fell so hard he heard everything through a closed patio door. He found me after I'd fallen and gotten a concussion after hitting the wall on the way down.

Severe malnutrition with gastroparesis and Crohn's

To help me get back into a safe zone, I had a feeding tube placed several months ago to get a better handle on both my Crohn's disease and my other digestive disease, gastroparesis. (That's one mean team together – creating a lot of havoc.) I had the power port implanted into my chest because it is long-term. Most people with gastroparesis who end up on tube feeding have for a length of time, or for life.

How long I'll be on tube feeding will be determined by how I react to the formula (that I hope to God my insurance covers). I’ve spent most of the summer vomiting and retching anything I try to get down. I went on a liquid diet... But eventually couldn’t swallow spit. Due to weakness, muscle atrophy, and cognitive delay, I’m a bumbling mess. I felt like a skeleton of a person, figuratively. Some days, I don’t have a ton of fight left in me due to drastic fatigue. It hurts to stand, walk and even get comfortable in bed.

It’s been a couple of months of recovery, as I've had multiple tube situations and replacements, while still trying to gain strength and take care of my IBD at the same time. I’ve been taking every step back I possibly can from things that I only absolutely need to do. I’ve had to choose myself instead of answering calls, messages, and emails. I chose myself for once when I needed it most – truth is, I didn't really have a choice.

Needing a strong support system

I’ve had an amazing support system, who have been there for me at a moment’s notice. My partner has been an absolute rock who has seen things no partner should witness, yet seems so together. My parents have been available at a moment's notice and I know I’ll get through the next few months adjusting with the help of family.

Please do not comment with "you poor thing" or "you’re so strong" – I want no sympathy. I write this to others that understand the fields we stand alone in sometimes, then find ourselves helpless at the top of a mountain. Selfishly, it's easier to have this conversation in one social media post, which I did, instead of people noticing rapid weight loss and commenting with totally inappropriate, unsolicited advice. It doesn’t help, it’s offensive and it’s consuming energy I don’t have.

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