Still Miles to Go

August 22-29 is Digestive Tract Paralysis (DTP) Awareness Week.

Because I suffer from DTP, I thought I’d share a little about DTP, my story, and the stories of some friends.

I have what’s called “gastroparesis.” That’s gastro– (meaning stomach) and –paresis (meaning partial paralysis). I also have intestinal dysmotility which has resulted in many episodes of intestinal psuedo-obstruction. And that’s intestinal (meaning relating to the small intestines and colon), pseudo- (meaning false), and obstruction (a blockage). Both issues are common with many types of mito.

As a friend with Crohn’s disease has said about GI-tract disorders:

“What are those?” you ask. Butt diseases. Nobody talks about them because butts are embarrassing.

But these are real and serious conditions because the GI (gastrointestinal) system processes your food (which contributes to how well your entire body functions), GI disorders are very serious. They are something that people should talk about because without vital nutrition, your body deteriorates rapidly. There are, however, some medical “solutions” to poor nutrition. Although doctors initially try treatment with medication and diet, they may eventually resort to using TPN (total parenteral nutrition), which is essentially IV nutrition, and/or a GJ (Gastrojejunal) tube, a tube that directly feeds into the small bowel, bypassing the stomach.

You may have remembered me mentioning my gastric emptying study a couple weeks ago. This test was done to measure just how severe my gastroparesis is. We just got the official results from the physician and it turns out that I incorrectly heard the technician. I mentioned that for the last 90 minutes of the 3-hour test I was at 44% empty, however, it turns out I was at ~34% empty. That’s a big difference. In more easily understood terms, I empty over 3 times slower than the average “normal” person.

Now years into testing and treating my worsening GP and dysmotility, we are trying to find some better solutions. I’m 20 lbs. below the “ideal” weight for my height and, unfortunately, still losing. My doctors currently rely primarily on medication and diet to control my symptoms. To control the reflux (GERD) caused by the GP, I take 80mg of Prilosec/day and 300mg of Ranitidine/day. To control my nausea and vomiting, I’m on 8mg of ODT Zofran 3x/day. The GP is currently being attacked by the pro-motility drug Reglan with 5mg 3x/day. Finally, to treat the intestinal dysmotility, I take Miralax 4x/day and MagCitrate 2-4x/week. Yep, that’s a TON of medication for just one organ system. I pray daily that there’s something they can do to get me off the meds because each comes with its own slew of side effects. And despite all these medications, I’m on a mostly liquid diet. Yep, each mean consists primarily of A-Soy and Vitamin Water. Yum!

But I still consider myself somewhat lucky. I have friends who do rely on the other methods described (GJ tubes and TPN).

This is Sheridan:

Sheridan is a friend from Maine who relies on TPN. When she is using it, she carries it in her backpack as shown below. Without it, she would not be able to get the necessary nutrients to survive. Unfortunately, TPN requires a central line which means you’re more susceptible to infections of the blood. Additionally, TPN can cause lasting liver damage if you’re on it too long.

This is Ava:

Ava is a spirited little girl who just turned 5. She has a different solution to her GP, dysmotility, and severe reflux: a GJ tube. While her parents have told me it’s “the best thing we’ve ever done for her,” it is a serious decision. GJ tubes can get infected and may occasionally fall out.

And this is Matthew:

Matthew is an adorable kindergartner who has an affinity for lollipops and My Little Pony. He also has CIPO (Chronic Intestinal Pseudo-Obstruction). It causes his stomach to become severely distended by day’s end. He also relies on a G tube which also allows him to vent excess gas and bile which get backed up due to the CIPO.

Matthew at the end of the day

Phew! I hope that helps everyone better understand those of us with Digestive Tract Paralysis. Thank you to Matthew and his mom Lisa, Ava and her mom Lindsay, and Sheridan for letting me use their photos and stories to share with others. You guys rock my world with the daily strength you exude.