Power in Persistence: One Patient’s Journey to Being Heard

Katie Marschilok | Oley Member

My journey with chronic intestinal failure began suddenly in 2016, when I lost fifty-five pounds within four months, developed severe iron deficiency anemia, and had laboratory values indicative of malnutrition. My gastric emptying study (GES) demonstrated severe delay and gastroparesis was suspected. My local GI physician did a great job of correcting my malnutrition, transitioning me to home enteral nutrition (HEN, or tube feeding) and providing a referral to a hematologist for iron infusions. Eventually I was transitioned to home parenteral (IV) nutrition (HPN) in 2017, following an intestinal perforation. My personal quest to find a reason began. I was naïve to the limitations of current GI diagnostic tests and hoped that if the cause of my GP could be found, an effective treatment option could be realized as well.

This quest took me from the summer of 2016 to the fall of 2023; seven long years. I was seen by specialists in California, Massachusetts, New York, Ohio, Pennsylvania, and Washington, D.C. Additional diagnostic testing added to confusion. A 2016 SmartPill test indicated normal stomach emptying and delay in small intestine transit time. A 2017 four-day GES showed delay in stomach emptying, colonic inertia, and normal small intestine transit time. Multiple scans during the seven years showed various abnormalities, but nothing definitive.

A 2022 gall bladder surgery revealed multiple abdominal adhesions. It was hoped that upon their removal I would improve. The slight improvement I experienced was very short lived. I tried every available motility medication and experienced

escalation in pain and symptoms of bloating, diarrhea, and bile acid diarrhea.

What do any of us with chronic intestinal challenges hope for when we meet a new GI specialist? I hoped to be listened to, and treated with compassion and understanding. I dreamt of having a specialist familiar with a similar case discuss ideas of how to help me. How disappointing when the following words were said to me:

“You are not in my wheelhouse.”

“Isolated small intestine dysmotility, you are the rarest of the rare.”

“Try eating oatmeal every day, that might help.”

“I hear bowel sounds, you can’t have gastroparesis.”

“If you were twenty years younger, this would be a different conversation.”

“Your local MD is doing a great job of managing your HPN, I don’t see anything that we can improve upon.”

“Small intestine surgery or transplant requires more recovery than anyone your age should want to go through.”

“There is nothing wrong with you except pelvic floor disorder, and maybe a pulled abdominal muscle. Don’t lift anything heavy.”

“Restart enteral feeding, you can’t live the rest of your life on HPN.” (I had tried that several times, to no avail and great pain.)

Exhaustion, frustration, and dealing with so many disappointments made me decide to give up on the big deal GI specialty clinics when I read information about yet another specialty clinic, in Pennsylvania (distinct and in a different city from the one I had visited previously). My GI doctor encouraged me and referred me, and after stating that this would be my last attempt, I moved forward.

Illuminating Records

Prior to my first appointment in September 2023, I had tracked my symptoms daily for one full year in easily readable format on one sheet of paper. It looked like this:

Date: Pain (on a scale of 1 to 10); Diarrhea (number of times); Bile acid diarrhea (BAD; number of times); Bloating; Lbs. lost

For example: Date: Pain 4, D 6, BAD 2, Bloat, 3 lbs.

No entry meant I had no symptoms and felt well, with pain level below 2. The statistics for one year surprised me. I had terribly challenging days 25 percent of total days, was recovering from bad days 25 percent of my life, and felt ok approximately 50 percent of the time. There was no pattern or predictability to my bad days. I also took a picture of my severely bloated abdomen on one of my most difficult days.

I informed my new doctor that despite my age of 69, I had no comorbidities and had been a healthy active person. I laid the horrific-looking picture and my one-page symptom log that included the statistics in front of my new doctor. He kept looking at the picture and asked very probing questions. He made no promises, but stated that upon having time to study my scans in detail he would call me with his thoughts. Three months later we had a substantive telephone appointment and he proposed surgical intervention.

Four months later I had GI surgery (not a transplant) and it was life altering. I am currently in the “intestinal rehabilitation” phase of my recovery. I gradually increased my oral calories/day and the real miracle is that I have had no recurrence of episodes of terrible painful days. I don’t doubt that I might periodically need some level of nutrition support, but to have a life free of abdominal pain and other accompanying symptoms and to be able to eat is an amazing gift.

I know that two of the previous specialists I saw were GI surgeons with the surgical skills to help me. I feel they did not put the time into studying my scans and tests and dismissed me quickly. They both made comments about my age. One year of objective concise data and the startling picture that stayed with my chart might have helped make the difference. While in Pennsylvania for an appointment, we went to a museum that had a section devoted to the department of the medical center

that my surgeon was a part of. I saw a video clip of the doctor that the center was named for, stating that he settled in that city because innovation was embraced and people on the street exhibited a “Why not?” attitude. That attitude, plus the belief that there must be something that could be done to improve my situation from my doctor, changed my life.

Hope

I am sharing my experience in the event it might give someone else hope or a helpful strategy. Prepare for any medical appointment by creating the most compelling description of your situation. My picture and objective data spoke louder than my words. The description should be concise, complete, and easy to understand quickly.

Become the best advocate for yourself you can be. If you don’t have the energy, or ability, to advocate strongly for yourself, ask for help. I wish everyone challenged with chronic GI issues better health and a better future. ■