After my G-POEM, life finally felt like it was moving in the right direction again. I was enjoying food (actually enjoying it) and for the first time in years, I didn’t feel scared every time I sat down to eat. The recovery was long and incredibly challenging, but it was worth it. I was hopeful, I was healing, and I was heading toward a better place. 

Life stopped once again in early 2025 with new digestive issues, this time in a completely different way. My stomach still seemed to be functioning, but I began struggling with constipation and pain in a way I never had before. It slowly progressed into something life threatening: rapid weight loss, nonstop nausea, intense pain, and going weeks without being able to go to the bathroom at all. The amount of pain and suffering was astronomical and it has been humiliating. This is by far one of the hardest phases of my GI journey to live with and tested my resiliency the most. I hadn’t felt that broken and gutted of optimism in a very long time. 

By August, things had spiraled. I had lost more than 35 pounds, any muscle I had left was gone, and I could barely get food down. I wasn’t eating, I wasn’t absorbing nutrients, and the dehydration was becoming dangerous. I ended up in the hospital in September, desperate for relief.

After countless tests, scans, specialist appointments, and emergency visits, we ruled out obstructions, masses, Crohn’s disease, Ulcerative Colitis, and anything immediately dangerous. The conclusion became painfully clear: I wasn’t dealing with just gastroparesis anymore. I had a major motility problem that was affecting my stomach, my intestines, and my colon. My entire GI system wasn’t working.

Without treatment that worked, I was withering away. We discovered pelvic floor dysfunction, early signs of colonic inertia, and more questions than answers. We are still in the process of figuring out the exact cause and I’m still doing everything I can to stay afloat and find something that gives me a tiny bit of hope each day to get to the next one. 

While all of this was happening, my gastroparesis symptoms started to return due to the amount of trauma my GI tract is experiencing. The nausea increased which increased vomiting and other problems. Eating is hard again and I knew my stomach wasn’t okay. During my endoscopy last month, we learned that my “permanent” G-POEM… wasn’t permanent.

My pylorus sphincter had closed shut again and very little was passing through my stomach. 

I’m scheduled for a repeat G-POEM the second week of December, which is a relief, because I know how much the first one helped me. The prep and the recovery are really rough and I don’t think I can manage losing any more weight. The holidays are once again spent healing or suffering from something, but I don’t even care anymore. 

There might be an obstacle, though, and my surgeon was honest with me. He’s concerned that when he goes in, he may find too much scar tissue or structural damage within the muscle to perform the procedure. Long-term Botox use, which was helpful and highly recommended at the time, is now known to cause problems with scarring and stiffness in the pylorus, and that may now be working against me. That and a connective tissue disorder are a deadly combo.

If he gets in there and discovers that it isn’t possible, I’ll have to choose what comes next: a Pyloroplasty, a gastric neurostimulator, or a Pylorectomy. None of those options are small, and each comes with its own risks and unknowns and things I’d never thought I’d have to worry about.  

I’m trying to stay optimistic that this will go smoothly and my surgeon will be able to complete it and that it will remain permanent. I’m also a realist and my body is unpredictable, fragile, and rarely acts normal. I’m holding both truths at once: the hope that this will finally bring relief, and the understanding that it might not work the way we want it to. 

I’ve been really sad lately. Every setback feels like another missed opportunity, another dream put on hold, another reminder that I have no idea what’s coming next. Chronic illness is cruel… it pulls you out of your own life over and over again. I want to be my own person and build a future but instead I’m constantly forced to respond to whatever my body does. I just want to know who I’m supposed to be and what my life could look like without being interrupted at every turn.

Either way, I know I’ll be strong enough to face whatever comes next. 

Thanks for reading.