Just Imagine...

By: Carissa Haston
G-PACT Founder and President

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...just a part of life. Social activities are non-existent 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 feel fortunate that you are even capable of keeping that down, realizing that 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 gastroparesis and intestinal pseudo-obstruction is like.

These conditions are so poorly understood. They are so hidden that people often don't believe they are real or are not as serious as they actually are. Although difficult to understand, patients suffering from GP and CIP may look completely healthy. They may drive, work, shop, go to church, take care of a family, and look great on the outside. Their color may be nice, they may look strong and energetic, and they may appear to be feeling well. Yet, the turmoil churning within them is by no means normal.

Remember the last time you had the flu. After 24 hours of nausea, vomiting, perhaps diarrhea, and aches and pains, you couldn't wait to get back to work and your normal activities. As you tried to return to your routine activities, however, you did notice 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 champions 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. You are getting closer to understanding what life with GP and CIP is like, but you are still not there.

On top of the physical issues, because the conditions are so poorly understood, people with GP and CIP often have to live with the challenges of stereotyping by society. It is often believed that patients are exaggerating their conditions because they 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. People simply don't understand that a couple sips of soup can send one's gut into a frenzy and result in hours of nausea, abdominal pain, and vomiting. Sometimes this lasts even for days. One wrong bite of food can result in a bowel obstruction and trip to the hospital for an NG tube for suction or surgery to remove the blockage. There are no cold and flu treatments to help symptoms or treat the conditions at all. At best, patients can try some anti-nausea medications with nasty side effects, or drugs that are so expensive insurance companies only provide 12 a month...so they have to decide which 12 times a month they are sick enough to take it. On top of that, any drugs that may help are pulled from the market and no longer available. Once that is removed, even if restarted through compassionate clearance programs, they never quite work as well again. But the odds of getting on that program are slim to none. They feel like everything has been taken away from them...not only health, a normal life, food, and even friends and family who jump ship, but the only treatment that keeps them even somewhat functioning.

Think back again to the day you had the flu. You probably did not want to lift your head off the bed or couch. You felt too weak to make it to the bathroom. Every time you sat up, you felt your head spin and the nausea increased even more. Finally, it was a battle of determination to force yourself up and walk to distance to the bathroom. While you were up, you tried to grab as many items as you needed so you didn't have to get back up again for a long time. By the time you get back to bed, you were so weak and wiped out that all you wanted to do is sleep or watch TV. But you couldn't get your mind off the nausea. It was so overwhelming that you curled up into a ball on your side and just waited for it to pass. You took flu medication in hopes of sleeping it off and had hope that tomorrow would be better.

People with GP and CIP don't have that hope that tomorrow will be better right now. Each day varies and some are better than others, but inevitably the bad days will always come back. There are limited options to treat symptoms, but they don't work well. Patients are basically told to "live with it." In some cases, it can't be lived with. While most people with GP get by on what is available, because there are no other options, quality of life is certainly very poor. Many survive on less than 1,000 calories a day, severe weight loss, disability, tube feedings, IV nutrition, medication with nasty side effects, and a life full of invasive medical treatments and hospitalizations. GP and CIP are not just simple illnesses which can be cured through diet changes, medication, or surgery. They do not mildly impact life. They have a profound influence on every daily activities, 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. The body often quits absorbing, organs shut down, and the liver may fail for those who have been on long term IV nutrition. Veins become inaccessible and there is no way for them to receive nutrition. Some who are fortunate enough to be aware of the option and be eligible may pursue a five organ transplant as a last resort to stay alive. While this can be miraculous and life saving, it doesn't come without its own complications for life. Individuals who reach this level of severity have become desperate. There are no options. They either risk their lives by going through a transplant, recognizing that even if they make it to the transplant and out of the OR, they face a lifetime of complications and possible organ rejection. But the only other option is starvation. There's not really a choice when you get to that point.

Living with GP and CIP is hard to describe. The best patients can do to help others understand is to tell people to consider what it would feel like to have the 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 they deal with is not real and not worthy of attention. Because they don't "look" sick, family and friends who don't believe put a wedge between them or completely leave, believing that the person is trying to use a mild condition to "benefit" from resources such as disability, have an excuse to get out of unwanted duties, a way to receive special parking "privileges," and other accommodations at work and school. They are often looked at oddly when forced to admit they are on disability because of a "stomach" problem, can't lift a box of sodas into their cars because they are too weak, get glared at because they park in an HP spot but get out of the car walking, and dealing with other colleagues and students who are jealous of the accommodations received to make life easier to live and adaptation into society easier.

GP and CIP need more attention. People don't understand what it is really like to fight these conditions and what daily life is like for those who suffer. They are downplayed as simply being conditions that can be controlled if "you would just eat correctly and avoid certain foods." While in some instances this is true, there is a very wide spectrum to the level that people die from these conditions as well. If not to the point of dying physically, many are unable to truly "live" at all as GP and CIP zaps the life out of them. Note how long it took you to recover from just a 24 hour flu. Then realize that in GP and CIP there is no recovery. There is no in between. It is a daily battle, with ups and downs, unknowns, and a life full of complexity and misunderstanding. Try to step into their shoes for a short time. 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 them fight. Support them. Try to understand. Let them vent without judging them. Encourage them. They often lack self-confidence because they have either been judged so much or feel as if they are incapable of accomplishing important things because of being ill. Also, realize that you are dealing with some of the strongest, toughest, people you will ever meet. Thank you for taking the time to read this and step into the lives of those suffering from GP and CIP for a short time.