I began a journey that forever changed my life when I was diagnosed with gastroparesis (GP) and chronic intestinal pseudo-obstruction (CIP). Over the years, I’ve been on tube feedings and TPN (IV nutrition). I lost all of my veins for central lines. The doctors at my local hospital had no way to feed me. I was referred to the University of Pittsburgh Medical Center, where I underwent a five-organ transplant (small bowel, stomach, pancreas, liver and duodenum) in 2006. My liver had to be transplanted because of damage caused by the TPN.
Although it saved my life, it’s not a cure. I’m on a lot of medication with the risk of developing kidney failure, diabetes, glaucoma and skin cancer. As a result of the GP, CIP and medication side effects, I’ve been through six cardiac arrests and seizures. I had osteoporosis by age 23. Since the transplant, my GP and CIP, now believed to be caused by mitochondrial disease, have returned. I had my colon detached in 2013 and am on tube feeds and an ileostomy for life.
Can you imagine never being able to eat again? Hooking up to IV nutrition or tube feedings every day in order to live? Carrying your nutrition on your back all day or being attached to a pole all night? Or simply having to “survive” on chicken broth, Ensure and small bites of food all day long? And in spite of that, still dealing with malnutrition, dehydration, weight loss, abdominal pain, nausea and vomiting on a daily basis?
Frequent trips to the ER and hospital become routine. Social activities are nonexistent because most of them involve food. If you do go out, you end up ordering water, maybe a soda, and pulling that pack of crackers out of your purse to nibble at. You may feel fortunate you can even keep that down, because many people in similar situations can’t. Making plans is a challenge. You may feel well and up for an outing, but then while out, the symptoms attack and a planned fun-filled evening becomes a drag very quickly. That’s what life with GP and CIP is like.
These conditions are so poorly understood. They are so hidden that people often don’t believe they’re real or as serious as they actually are. Patients living with GP and CIP may look completely healthy. We may drive, work, shop, go to church, take care of a family and look great on the outside. Our color may be nice, we may look strong and energetic, and we may appear to be feeling well. Yet, the turmoil churning within us is by no means normal.
Remember the last time you had the flu. After 24 hours of nausea, vomiting, diarrhea, aches and pains, you couldn’t wait to get back to your normal activities. But when you tried to return, you felt weaker than usual. It was more challenging to get things done because you had a day of surviving on toast, crackers and soup — not exactly a champion’s dinner!
Now take that day and multiply it by years. Add medication, medical procedures, hospitalizations, chronic malnutrition complications, invasive treatments, surgeries and additional illnesses that develop over time. Now you’re closer to understanding what life with GP and CIP is like, but you’re still not there.
Because the conditions are so poorly understood, people often believe we’re exaggerating our conditions because we don’t “look” sick. Others believe those who suffer really just have an eating disorder and use a “mild” condition as an excuse for not eating well. There are no cold or flu treatments to help symptoms or treat the conditions at all. At best, we can try some anti-nausea medications with nasty side effects, or drugs that are so expensive, insurance companies only provide a few a month so we have to decide whether we’re sick enough to take them. On top of that, any drugs that may help can be pulled from the market.
Right now, people with GP and CIP are basically told to “live with it.” But these illnesses can’t be cured through diet changes, medication or surgery. They have a profound influence on every daily activity, regardless of severity. There is no escape. Is this the kind of life a person wants to “just live with?”
There are also many situations in which living with GP and CIP are no longer an option. In severe cases, chronic malnutrition takes over, and people are unable to survive the trauma on the body. Veins become inaccessible and there is no way for them to receive nutrition. Some may be eligible for a multiple organ transplant as a last resort to stay alive. While this can be miraculous and lifesaving, it comes with its own lifelong complications.
Consider what it would feel like to have the stomach flu every single day, and the impact that would have on your life. But then you have to throw in additional health problems and the stereotypes, comments and claims by others that what we deal with is not real and not worthy of attention.
The reality of living with GP and CIP needs more attention. The next time you have your head in the toilet, imagine life like that every day. Be thankful for what you have. Be thankful you will recover and life will return to normal. And remember those whose lives will never return to normal. Give back. Help us fight. Support us. Try to understand. Let us vent without judging us. Encourage us. And realize you’re dealing with some of the strongest, toughest people you will ever meet.