Monday, October 29, 2012

My life matters, your life matters. Change the world!

By: Carissa Haston
G-PACT President/Founder

You don't appreciate life as much until you've almost lost it. Once you are given a second chance, you really realize the meaning of it and how fragile it can be. So few people have the opportunity to re-evaluate life and the meaning of it.

My life isn't like "It's a Wonderful Life" in that I was never born, but I see it as if I have had the same opportunity to see what changes I can make to make the world a different place. I have learned this at a very early age. I appreciate life so much more! I get excited about the teeniest things that most people see as mundane and routine.

If something goes wrong, I'm normal and I DO complain, but I quickly try to straighten out. Problems are problems and they are tough. Life is tough. It is what it is. Some of us have been forced to tackle incredible challenges, while others have experienced a relatively normal life with relatively normal problems. But, we all have our struggles and I don't believe that anyone's problems are minor. They are all a big deal and have a profound influence on us. We grow through them, regardless of what they are. I want to hear about the struggles of everyone, regardless of how "minor" they may seem in comparison. I care about your concerns. They matter to me too! God must have really big, active, and perfect ears because He hears from me all the time!

People often ask me how I do it. How do I deal with so much? I don't really have any choice! No, it's not easy. No I am not always as strong as I appear to be or as I say. I'm just glad I'm still here to experience the problems and work my way through them. I am a stronger person for it. I get stronger all the time.

Going through a transplant is TOUGH. The process, the fears, the unknowns, the loss of others not so fortunate, the complications that arise, the complications expected to arise from long term-medications, and feeling lost in a world where people haven't had the same experiences. Trying to balance out my health life with any sense of "normalcy" like a job, having a family, living on my own, and having energy to spend time with friends and just hang out is challenging. I want to be "normal" in terms of life activities, but my body too often has its own plans. Some days I am too weak to get out of bed, while others I am energetic and ready to conquer the world. I never know what each day will be like. None of us do, but it's much more real and unstable for me.

I can be happy, jumpy, and feel well for half a day and be in the ER or hospital later that same day. I can look really good for a while, and then I crash out and can't move. I can be out driving, and then have to stop to avoid falling asleep at the wheel. I can feel well, then eat a piece of cheese or a few crackers and be sick the rest of the day. But, I am a fighter. I know I am strong.

I don't always feel strong though. Sometimes I just want to cry and cry and cry. I want to scream, throw pillows around, and shut out the world. Sometimes it doesn't seem fair. But life isn't fair. I don't know why I have been through all of this. All I know is that I can't imagine what my life would be like if I hadn't. What would I be doing? Would I be better off or worse off? Would I be as strong? Would God and relying on Him be as high of a priority in my life? I can't imagine my life any differently. I don't know it differently. Not that I wouldn't love to be functioning as my healthy friends and loved ones, but I'm not sure I really "miss" it because I don't really know what I'm missing out on. Maybe a day in the life of YOUR shoes would help me understand. But, I'm not sure I could handle the pain of experiencing a day in the life of an average person and really realizing what I have lost. Or perhaps, the pain wouldn't be as strong because I will realize what I have gained too. The things that you are missing out on because you haven't shared the good side of my experiences.

To the outside world this is horrendous. Yes, there are times that are horrendous and I want to give up, but I honestly don't know life any other way and perhaps that's one way I can cope. I've learned to adapt, change, and work through each new complication as it arises. I've had to become flexible. The fact is, God always comes through for me and gives me what I need to deal with each situation that arises. He will never allow me more than I can bear. When I feel like it is too much, He will always be there to supply all my needs. The feelings of His provisions when I am absolutely desperate and at His feet is something that can't be matched. Oh how He loves me so! He has been there for me in amazing ways over the past few weeks. I have felt His presence in the midst of some pretty tough challenges and He has brought me through in His own unique and loving ways.

What has this given me? I have to focus on that rather than what it has taken away. While it has robbed me of so much, it has given me so much more I believe that only a few people who deal with the same situations can obtain. Compassion unmatched by anyone who is not in my shoes. The opportunity to help others in ways I never would have had. I've met some incredible people who I can't imagine not being part of my life. I have matured and grown in ways that many people never do. I have an understanding and appreciation for the finer things that people don't notice. I love Mondays! Monday is another day of the week to cherish and live out the second life I have been given. It's not a day to dread!

I LOVE life. I say this all the time, but I LOVE LIFE! Even with its challenges, its ups and downs, discouragements, fears, overwhelming sadness, devastation, there is so much GOOD! Just look around you! There is so much to enjoy in life! So much to learn, so many people to meet, so many things to experience!

I LOVE people. I love helping people. I love being around people! All kinds of people! I used to not be as accepting of such a wide range of backgrounds, but now I LOVE everybody! I realize that everyone has a purpose in life. Some make bad decisions, some try to hurt me intentionally, some don't understand me, but it's ok. God loves everyone...EVERYONE. I strive to do the same.

It's so easy to feel useless in this world when you can't keep up with others or give back as much due to limitations. Your life matters. Whether you are homebound, unable to work, unable to give much back to society, whether you are brilliant or mentally challenged, a president or a pooper scooper, what you do is important. Somehow, somewhere, your life has had an impact on someone. That someone's world has been changed because of you. If that's all that you ever feel like you have accomplished in life, you have changed the world!

In a recent Carissaism I stated "Some people write and others speak. Some build and others destroy. Some see the glass as half-full, others half-empty. Many lead, others follow. Some are outgoing, others shy. Some are anxious, others calm. Some work ahead, others procrastinate. Some enjoy a busy schedule, others like to be free. We all have our differences. We don't always agree. But when we all come together, what an impact we can be!"

Make a difference in your world today! Even the simplest things matter!

Monday, October 15, 2012

If only you knew...

By: Carissa Haston
G-PACT President

I wish that you knew
The pain that I feel
And how much it hurts
This is all so unreal

The loss of so many
Yet so few who care
In spite of the efforts
To make them aware

The hunger and pain
The loss of close friends
The tears that just flow
It all never ends

This illness is silent
It can't be seen
Yet it won't relent
no one hears our screams

All we do us fight
And we try so hard
There is no end in sight
And you think it's not true

"Change your diet a bit
Quit whining, you're stressed
Get out of that pit
You're just depressed"

Do you really know
How hard we try?
For a sloppy Joe
Or one bite of French fry?

But the hours we endure
All curled up in beds
Longing for a cure
Wish it WAS in our heads!

It's just so tough
You don't understand!
Waking up each day
"Can I do this AGAIN?"

I'll try one more bite
It can't be THAT bad
This time it just might
Digest just a tad

Then the pain, it hits!
It's so hard to deal
a moment of pleasure
And for days we just reel

And people they die
Our friends leave us out
They think we are fake
"You just want to pout!"

Have you had the flu?
This is worse than that
Is that real to you?
This is horribly true!

Of course I look good
I was up all night
Just throwing up food
Does that really seem right?

I long for an answer
I believe in a cure
I will never give up
Will you carry me through?

I need your support
Hold on to me tight
It's incredibly tough
To get through this fight

If you spend time with me
I know that you'll see
I'm one tough kid
Who will fight to the end!

You will see how I cope
That I'm working so hard
I have so much hope
And I'm nowhere near weak!

Friday, September 28, 2012

The challenges of trying to merge two worlds

Carissa Haston
G-PACT Founder and President

I live in a world that is different from most. I face a different reality than that of your average 34 year old. Mine is a world which is very real, a normal for me, yet poorly understood by the majority. It is a world in which my every attempt to describe it will not even begin to bring you close to understanding the impact it has in all aspects of my being. And while it is impossible for you to step even briefly into my world and get an adequate sense of my daily life, it is also impossible for me to step into your world and get a sense of reality in what is deemed to be normal in the average American lifestyle.

Since 1994 I have been challenged by something much greater than myself, human capabilities, and at times, I have even wondered about God. Being diagnosed with gastroparesis at the age of 16 was only the beginning of what would turn out to be both the biggest horror in my life and the greatest blessing as well. Since then I have been diagnosed with a number of other conditions which have resulted in six accounts of cardiac arrest, among other complications, and eventually led to total gut failure resulting in the need for a five organ transplant to save my life. What was intended to keep me alive for years, IV nutrition, eventually almost led to my death. I often wonder what my world would be like if I had never developed these conditions and my life went in another direction. What kind of person would I be? What would my passions entail? How would my world and the world of those around me be different? What would my perspective on life be? Where would my priorities lie?

Although I often ponder these questions, it is impossible for me to begin to fathom what the results would be. My life has been so consumed by fighting to get around in a world submerged in medications, doctors, hospital stays, plastic tubing, needles, artificial food, and that plastic tape that peels off all my skin cells when removed. I don’t know life any differently. Since my transplant my life within the medical system has improved, but will never be to the point of complete independence.

While no one has full control over his or her future or daily events, my activities are even more limited by something over which I have no control. My world is not managed so much by the hustle and bustle of daily affairs and the lives of those around me as it is by my own body. While my friends and family must manage the challenges of full-time jobs, raising families, and social activities, I must manage the frustrations of dealing with the ups and downs of living with a chronic illness. As they make plans for how to manage their time and various events, I am unable to make reliable plans due to the unknowns and changes within my health multiple times throughout the day. My schedule includes ensuring that my medications are taken on time, every time, and within a certain number of hours of each other. My daily routine will never be void of medical treatments, potential complications, and reminders that my world is beyond average. Unlike a vacation from work, school, or other events, I will never be able to take a vacation from my life as a multi-visceral transplant recipient. My life is dependent on the accuracy in which I follow a certain regimen. I must avoid many things that others enjoy such as gardening, certain foods, specific types of environments, tattoos and piercings, and certain jobs due to the chances of picking up infections. I have to be very conscientious of my surroundings and ensure that I avoid or limit the amount of exposure I have to certain people, animals, and diseases that may not affect the average person, but could severely threaten my life and health. An infection in me is not treatable by a simple oral antibiotic, but must be treated aggressively with IV antibiotics in order to help my body be able to better fight it off. Being a transplant recipient makes everything more complicated and dangerous.

In spite of living in a world which is filled with pre-cautions, uncertainties, and a daily focus on doing my part to stay well, I cannot live in a bubble. I refuse to live in a bubble. In spite of the fact that I recognize some of the things that I do to enjoy life could potentially be dangerous, I choose to do certain things anyway. I am not allowed to own a guinea pig due to the risk of developing rotavirus. However, I have had guinea pigs since the age of nine and my life would be incomplete without a little pal. I take risks when working around kids who may be carrying around an infectious disease that I could easily catch, but then my involvement with my church would not be in the positions in which I most enjoy and have been gifted to serve. It’s all a matter of weighing the positive and negatives, the pleasures against the risks, and the advantages with the disadvantages.

One of the hardest things for me to deal with is trying to acclimate myself into more of a normal world as my health has improved, while it is nowhere near to the point of being independent in what I do or free from a life of health complications and treatments. It is tough to deal with what is considered to be a “silent” or “invisible” illness. While I am glad that I often don’t look sick and my health problems are not overtly apparent to the public, it is also difficult to deal with the discrimination, lack of understanding, and blank stares of battling serious chronic illnesses while looking perfectly normal. Although undoubtedly I have many challenges, people often don’t understand the measure of impact it has on my world because I am able to walk, talk, breathe, drive, and generally have a positive approach to life and do normal things while rarely seeking assistance or accommodations unless absolutely necessary. On the surface, no one would even know the struggles I have within or the level of pain that I deal with every day. I make an effort to push myself in spite of being weak, tired, sore, or nauseous. In fact, sometimes I push myself to the point of knowing that I am physically no longer safe to continue what I am doing, but rather than seek help, I often work through my own solution, wait it out, or continue anyway. I recognize that these are not the best avenues to pursue in many cases, but it’s tough because I want people to see me as being normal and I want to do everything on my own.

I have discovered that although dealing with a chronic illness in my last few years as a pediatric patient and through college, that it is actually more difficult socially to manage it now. Upon meeting someone for the first time, the natural first question is: what do you do for a living? It’s an impossible question to avoid! Everyone works…right? It’s a great and normal conversation starter in most circumstances, yet in my case it stumps me almost every time. Immediately, any efforts I may have made to postpone or avoid being labeled as having a chronic illness are destroyed. While I am passionate about what I do and proud of the accomplishments I have made in life to this point, there is no way getting around explaining why I do it. And, to top it off, I don’t do it for a living. At the age of 22 and straight out of college, I was unable to work full-time and was approved for disability within two months of applying. But needing something to occupy my time and help others in the aftermath of months of depression due to the postponement of my dream, the pursuit of my graduate Art Therapy degree, I started what would become the world’s largest support group for gastroparesis, G-PACT. Within one year, I had used that to start the only non-profit in the world dedicated to fighting gastroparesis. Eventually, because the two conditions frequently come together, we expanded into chronic intestinal pseudo-obstruction. We recently added colonic inertia to each out to even more in need.

Every time I am approached with that dreaded question regarding career, I try to respond in the most positive light possible, yet there is no way getting around the immediate identification of me as someone who is suffering from a chronic, very debilitating disease. My typical response is that I am founder and CEO of a non-profit organization which I run from my home for gastroparesis and chronic intestinal pseudo-obstruction, two conditions from which I suffered which led to a five organ transplant in March 2006. Although I try to leave it at that in the early stages of meeting others, naturally the term “five organ transplant” brings up even more questions and leads me into a very complicated, albeit ice-breaking, conversation. There’s just no quick or easy way to explain what leads up to a five organ transplant or any portion of my very long and complicated medical history! This question is then usually followed by the question of my living arrangements. It is difficult for me to explain that I am unable to be independent and live in an apartment in the basement of my parents’ home. It is often difficult to connect with others in my age group because their world is so different from mine. They are able to talk about their careers, often marriage and kids, rent or mortgages, co-workers, and other social events. These things are unfathomable to me! I can’t even begin to understand how a person can hold down a full-time job, come home to care for a family, attend and/or organize social functions, and keep up with regular household chores and shopping. I feel as if I have accomplished something in a day if I manage to spend a couple hours focusing hard on one project, or making a trip out to run a couple of errands.

Although I try to step into their world and understand what their lives are like, it’s impossible for me to relate so therefore I am often left speechless and unable to carry on a routine conversation. At the same time, they are unable to understand where I am coming from and that the world I live in is impossible to step out of. While a career, family, and common, everyday activities dominate their lives, my life is filled with things that few can understand. It can be a one-sided conversation. Since it is much more common to do the things that they do, I can connect to an extent with their stories, but when it comes to sharing my own experiences it’s just not the same. I often don’t know how to connect and it makes it difficult to get to know me for who I am, as an average person, just coming from a completely different perspective and a totally different life experience. It impacts everything and there is no way around it. I often feel left out of conversations because I am unable to talk about or understand things that are so commonplace for most people, yet they are also unable to relate to the things that are so commonplace for me. As much as I strive to maintain normal conversation and limit my health experiences, it is such a big part of my life and a huge part of who I have become, what I am passionate about, why I do the things I do and say the things I do, and why my lifestyle is as it is that I don’t know how to get around it. I certainly can’t go back and change those circumstances in order to achieve a better sense of normalcy, and there’s nothing I can do now to escape the realities of what I deal with on a daily basis and the limitations I still have. I often find myself desperately trying to dig up stories of times when some event in my life happened that was within the realms of normal...a college memory, an internship experience, or a G-PACT issue that puts me in the career path in a sense, but unfortunately most experiences are still tainted by the 18 years that my life has been so wrapped in the medical world. I can’t separate them. No matter how hard I try, I can’t. It’s all part of me and who I have become. Yet, for some reason, many people tend to think that I should be able to separate the two. It’s only natural for my jokes, comments, and conversations to somehow involve that aspect of my life because it has such a profound influence on everything that I do.

Not too many people my age understand the feeling of losing very close friends, most of whom have shared the same experiences as I have. It’s a scary feeling to watch as some of my closest friends who fought so hard with me continue to struggle, and in many cases, lose the battle. Over the years, I have dealt with the loss of several very close friends due to transplant related complications. No one but those who have been through the transplant process can understand the fears that I have and how I must manage those fears and frustrations on a daily basis. Although I am very optimistic and see my future as bright and fulfilling, I can’t help but deal with strong emotions when any situation goes awry in my life or that of my transplanted friends. I don’t dwell on these things by any means. I make every attempt to avoid looking to the past as much as possible, but I certainly can’t separate them from my life.

Having a transplant changed things for me. I see this life as separate and completely different from my previous one, yet they are still connected. I have different issues I must battle and the entire transplant process has brought me to a greater understanding of myself, God, love, my family, friends, overall suffering, and the incredible need to fight regardless of the odds and discomfort involved. However, pre-transplant complications led to the need for a transplant and it’s all part of the big picture. I often feel as if I am ten years behind my peers in many ways because I am unable to talk about regular life issues beyond my college experiences. Sometimes I feel as if this makes me immature, but then I recognize that I am far from it. I may not be able to relate on levels that society places in front of me as a way of measuring maturity…the expectations of supporting myself financially, being totally independent, and caring for a family, my maturity is far higher in other levels of life and understanding and certainly my lack of independence is not related to anything in which I have any control.

I know how to handle complex challenges and decisions that others my age have never even considered. I’ve had to write an advance directive, a clear indication that I recognize my mortality at any time. I’ve had to push through pain, near fatal infections, cardiac arrests, surgeries, the inability to eat, living without a small bowel for a year, and the fight back from a 16 ½ hour five organ transplant and its complications just to achieve the measure of health that I have today. I have had to learn how to manage all the emotions, frustrations, and fears that come with the whole process and dealing with much of it without the full understanding of those around me. My battle with that continues as I do suffer the effects of some PTSD as a result of some of the medication problems I experienced post-transplant that left me unable to sleep, speak at times, think, remember, control, or care for myself. I was terrified, and what added to the trauma of this was the inability to express myself during that time and describe what I was experiencing to those who were trying to care for me. In spite of that, I have been able to overcome most of those memories and advance my life forward in an effort to focus on the future. While I am still haunted by those experiences, I have figured out how to cope when the emotions and fears hit and now I am able to lessen the impact they play in my life. 

These experiences have given me wisdom beyond my age as I am able to understand the challenges that come with managing not only physical problems, but the associated emotional, psychological, and spiritual challenges that so many people with chronic or life-threatening illnesses face. This has greatly enhanced my ability to work with the population in which I do. Although effective as a leader and role-model in G-PACT before, my effectiveness has been greatly enhanced by my experiences and my drive to fight for others has become even stronger. I don’t get paid for what I do in monetary terms, but I am paid every day that I am able to make an impact on the life of someone who is struggling and in need of knowing there are people out there who truly care and are fighting for them. My value as a human is not based on how much I earn, but how much of a difference I make in the lives of those around me.

Battling what I have and dealing with a future of unknowns never gets easier. It never will. I recognize that many of the medications I take and treatments I go through have consequences years down the road as well. It’s difficult at times to know that what is keeping me alive at this point may eventually lead to further complications. But I don’t let that rule my thinking or way of life. I can’t. Somewhere there is a family whose child died during an unexpected, catastrophic event and made the decision to give life to someone else during a time of mourning. I can’t let that family down. I have always felt it is my obligation to do what it takes to make that family proud to have given this gift and to see how their child has made an impact on the world.

The things that make my life so difficult are also the things that make me so passionate about life. Often, people do not understand why the littlest things are so exciting to me…an hour in the Jeep with the top off, spending a couple of hours with a friend, volunteer work doing anything for even an hour or two, and the need to cheer people up through any means I can think of, even if as simple as sending an online greeting card or an inspiring message through Facebook! I enjoy meeting people whether online or in person and just getting to know them. It means the world to me to go out with anyone at all to eat or just hang out and chat. The ability to travel and represent G-PACT is exciting because I was unable to do that for years. I love being able to represent thousands of people who are unable to represent themselves. I enjoy things in life that many people dread or try to avoid. Even things I don’t enjoy I often find that I don’t mind doing because I have the capacity to do them…I am alive to do them. There are so many things I want to learn now that I never had an interest in before. I want to travel to so many places! I love life and am grateful for every day that I wake up!

Although it is trying to know that in spite of my efforts to the contrary, I will never be seen as “normal." I recognize that I have been chosen for a reason to take on this task. My love and passion for God has grown and because I am unable to completely step out of my world and reality, it has given me many opportunities to share how the Great Physician has intervened in my life and given me more chances in life to serve Him. My story has encouraged others who continue to fight that there is hope as they have watched me come from the brink of death, unable to get out of bed, and not expected to live through the transplant, to someone who has recovered and found a way to fight back in a way that helps not only me in my attempts at coping and recovery, but all of them as well.

I recognize that not only do I owe it to my donor family to utilize every opportunity I am given and seek out others that become available, but I also owe it to my God who has clearly kept me in this world for a time because of some great purpose He has. Although His purpose is not always clear and my world is certainly filled with questions, frustration, and an ongoing struggle with inner thoughts, feelings, and fears, I know there is a purpose and it’s not in the future. It is something I am working towards fulfilling every day. So while I continue on in this constant battle of ups and downs, facing the unknown, and maneuvering within the unique and misunderstood world in which I live, I try to maintain perspective and recognize that I am not to be defined by what society deems as normal, but that God has given me a special environment in which to live and operate and a particular focus and gift in life that only those with my circumstances are given. When feeling frustrated by the inability to live up to society’s “norms” and not feeling fully connected with the typical world, I force myself to focus on how the world that I live in would be different if God had not given me the opportunity and abilities to work within it and make an impact in any way possible.

Monday, September 24, 2012

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 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.

Gastroparesis (GP)

I'll define Gastroparesis,
so more people will know.
It's where a stomach is paralyzed
or it empties too slow.

Some food comes up often,
with nausea and pain.
Some stomachs get bigger,
with food it retains.

Stomachs rock and roll
in people with GP,
Its like a ship tossed about
on a wild, stormy sea.

Often Gastroparesis
is not understood,
Those with the symptoms
would stop if they could.

Some doctors do know
when patients are ill.
Others do not believe
when symptoms are real.

They need to be educated,
to order the right tests.
They need to find treatments,
that would help best.

The devastation of GP
is so hard to endure,
More research is needed
so they'll find a cure.

by: Meggy's Grandma
Megan Kondilas is a patient with GP, moderator of G-PACT's Gutsy Teen Lounge, and volunteers for G-PACT in other ways

Please pass this on, so others can read :)

Thursday, September 20, 2012

My GP Story

Guest Blogger
Melissa McElfresh

Let's roll back the clock. About 5-6 years ago I was having pain/bloating when I drank water, even a sip. I told my Primary Care Doctor and she didn't think it was anything to worry about. We live on 5.49 acres, with a well, so she told me to test it. It was fine, as always. I complained every year (just ordered my medical records and these complaints are not in there). Then 2 years ago I was having burning in my chest and after I ate, my pants didn't fit, then I got very tired. I started lying down during my work day, since I could not function well. Again, the next annual exam, all she told me was that I have GERD and to take Prilosec. I did and it didn't help. I was on and off of that for a year. In the Winter of 2011 I had so much pressure on my chest, I thought I was having asthma attacks. I would take my rescue inhaler and allergy pills, but it didn't make it go away. Since birth till now, these are the only issues I have ever had (but eczema) .

March 2012 I gave in with a burning in my chest I was not sure if I was having minor heart issues or not. My Primary Care doc didn't want to help and wanted me to go to ER. Since that is a $$ Copay, I went to an Urgent Care. I waited for 90 minutes to fill out paperwork and as soon as they saw my reason to be there (heart pain), I was admitted. I felt kind of bad for that, but knew I needed help too. From 2p until 6p I was in a little cube being tested on. All tests came back fine, no heart issue, still no high blood pressure and I am not diabetic (my father is, so I watch closely). Again, they felt it was GERD and doubled my dose plus added another dose per day to take.

I followed up the next week with my Primary Care doc, she had the 'results' and I was still having the stabbing pain in my chest. She then ordered an ultrasound. They checked every organ, I do believe for the $400+ it cost me! My insurance would not cover one cent of that!! Yep, that test was fine too. At this point my throat is burning too. So she thinks it is all the Advil/Aleve I take for shoulder pain (oh, I was in an auto accident on the freeway about 10 years prior to this and still have shoulder pain and sciatica … rear-ended on the freeway and my car was pushed into a cement barrier). So, esophagus damage was her next guess. So, I was sent to a GI Office for a scope. Prior to the scope I asked to be tested for gluten intolerance while they were already in there. I do not have a blockage, the stomach was clean, no inflammation of the esophagus, no silica disease and no signs of GERD. At that point I stopped taking the pills, as I was unable to have a bowel movement on my own.

It is now May 2012 and the GI Doc wants to do a Digestive Study (we all know this as the radioactive egg salad sandwich test). The results were 4 hours for me to process that stupid sandwich. My handout said the 'normal' range is 60-90 min. Hence, I have Gastroparesis.

I went to her office to find out the results. She then told me what I have. Gave me a piece of paper that was a print out from Mayo Clinic on GP. All it said was 'low fat, low fiber, small meals'. It said to avoid red meats, fresh fruit/veg, and other items. But it never said what I can have. She said, 'follow this and see me in 6 months'. What the ??!!

When I got home and picked up my jaw, I stated searching the internet for help. I talked to my concerned mother (retired RN) and she said 'are you sure?'. After that she didn't talk to me much about it. We are now in September 2012 and she is now speaking to me about my GP as she has seen my struggles. I educated my husband to the best of my ability, since I am learning every day. He understands and is very supportive. He will pick up things at the store that he feels I may be able to eat. Since my co-pay was already maxed out, I wanted off my birth control pills, so I elected to have my tubes tired. Family decision and one we talked about for many years (money was the issue). I read that maybe hormones have a roll in GP and since I was always sick on the birth control pills, might as well. It has not been the full 3 months yet to check and make sure the Essure procedure worked, but I am happy I did it. However, my GP is not so happy. I got worse after the procedure and have not bounced back. I would say I am 10 weeks into the 12 weeks. But even my co-workers have noticed I am sick more now. I had a Depo shot before the procedure and it should wear of soon. So, I am unsure if it is the hormones in the shot now, or if it is really my GP.

Every day I fight nausea. At times it and being dizzy are so bad I do not go into work. The days of pain seem to be gone, just a constant burn on my right side. I can't get it to go away unless I take an Advil/Aleve for a headache. I get them so bad and they turn into migraines. So, I wait to see if it will go away on its own before I pop a pill. Once I do the pain in the stomach is very bad (until the pill kicks in), doesn't matter if I have anything in my stomach prior. But, since I am only 35 I do not want to start down the road of pain meds.

My job allowed me to tap into next years vacation to use for my sick time. I was missing so much work and then ran out of time to use. They offered me part time position and we cannot afford it. At this point we are trying to sell our house, but are not having any luck. No matter how low we go. This is our only saving grace. I cannot keep missing work and I am unable to go some days.

The GI Doc said I need to take Dexilant (she is still adamant that I take a PPI). I used her free pills and then took my Rx to get filled. $150 for one month. I don't think so!! I told her and she gave me another one to take. I am, but it still does not make the nausea, pain, burning or dizzy spells go away. She gave me Zofran for the nausea. I was on it for about a week, then didn't take any more as I was not feeling nausea. During the time I took it I was off of work for about 4 days. I could not seem to get past being so worn out, had to take breaks to go to the mail box (used my inhaler … didn't help). I felt sick one morning and took it, since I was required to be at work that day. While driving to work my heart started to race. I made it to my parking lot, gathered my stuff and walked to work. I had to take little breaks to walk there and though I was going to throw up when I made it to door. My co-workers wanted to rush me to ER. I told them I think it is the Zofran. I looked it up on the internet and sure enough those are some of the reactions I can have. Tested it once more and same thing. The pills have been destroyed and the doctor was notified. She would not give me anything else for the nausea. So on a bad day I went to the store to find Bonine (like Dramamine). I took the one tablet (good for 24hrs) and felt like crap! I could not function and again did not go to work. I slept almost the full day and most of the next. Why would a person take this for sea-sickness??!! 

At this point I am out of options for what else to take. I do not want to try Reglan. Just want the nausea to go away. After 6 months I am getting use to the side pain. Only the days that I think a person is stabbing me, that is a different story. It is my hope that the nausea is tied into the dizziness and a pill can help with it.

My GI doc wants to see me in a few weeks. Little does she know I found a new GI doc to see. This gal came from WA DC, been out of school for 3 years and is specializing in GP. I get to see her on October 10th. At this point I am excited for a new person. I do not like the current GI doc, rather PA. Maybe this one can give me some ideas. I even would like to see a nutritionist. Since I consume so few calories (maybe 500 in a day... less on bad liquid only days). I did the best I can and have not dropped any more weight. To date I have lost about 15 lbs. My ribs are showing and I don't look that great anymore. Of all things, I lost my breasts. Bra's don't fit either. And pants, forget that if I am bloated. Can't wait for winter and to go to work in a dress when I am walking in the snow! Oh, and my hair is falling out. I take vitamin supplements, but guess I am lacking something else. I am sure most of you can relate. I don't ask for a pity party. This is my new life, so it seems. I just need help and guidance in finding what works for me. I do a food journal, but this trial-error thing is getting old.

Thanks for reading my initial story.

Tuesday, August 28, 2012

Life With A Chronic Invisible Illness by Guest Blogger Ashley Sellner

'If you have a stomach issue then why aren't you skinnier?' This is probably the
most offensive question I've ever been asked since I was diagnosed with
gastroparesis...ever heard of starvation mode? Yes, some GP patients are skinny,
some are in between like me, and some are very overweight. I like having a little
extra weight, especially for those weeks when I can't eat and lose 10lbs. 
I've always been really weird about my weight and self conscious and having
gastroparesis has only made that worse. Ever been starving, down 10lbs in 7 days,
unable to eat, and so bloated you look pregnant? I have...I had to go out and buy
a whole new wardrobe because of it. It's miserable to be bloated and nauseous all
the time. It's unbearable to feel that way AND feel horrible and uncomfortable in
everything you wear. My very supportive husband let me buy new clothes to help me
out and it means the world to me. I try not to let my condition control my life,
so it's nice to look 'normal' and not be in sweat pants and baggy shirts all day.

  Out of everything that gastroparesis has changed in my life, I think the thing
that aggravates me the most is to hear how people, loved ones and friends, aren't
supportive of the person suffering. It's hard to battle this condition 24/7, stay
perky and friendly, and feel all alone. I'm lucky that I have my husband, family,
and friends. Some people aren't that lucky and have 'loved' ones who have actually
left them because they said they couldn't handle it. 
 I started a new job last week and it's definitely made things harder. My employer
knows about my issues, but not how badly I'm affected at times. Starting a new
job is an exciting experience and I love my new position, but working is very
hard on me. Not only am I fighting the urge to vomit and dealing with constant
pain and nausea, but I'm also trying to keep up and focus and that can be
difficult. You wake up with a fever and a stomach ache and call out of work; I
wake up with that and it's just another day. It amazes me how much we adapt to
our situations. Millions of people every day walk around and live trying to
manage their GP and you'd never even notice it. 
 The biggest fear I have with GP is the fear of getting worse. The fear of feeding
tubes and pumps, disability; of having no other options to try. I have friends in
this situation and it's so sad. They just keep getting sicker and sicker and no
one can do anything. I'm also scared for when I get pregnant. I have the
possibility of feeling a little better, but I also have the possibility of
getting worse. Getting worse scares me more then anything. 
 If there's one thing us GP'ers have leaned it's that we never give up. The
people I know with GP are the strongest, most beautiful people I know. I'm sad
that there are so many of us but I am glad that I have them because there
support and encouragement and understanding can be the best medicine sometimes.

Sunday, August 26, 2012

My journey EDS and CIP by Guest Blogger Lucy Watts

My journey with Chronic Intestinal Pseudo Obstruction (CIP) began around my 15th birthday. We initially thought it was only oral thrush and food intolerances, then IBS, and then things spiralled out of control. I also have Ehlers Danlos Syndrome (EDS), a connective tissue disorder, and secondary Postural Orthostatic Tachycardia Syndrome (POTS).

My gut problems started in the Autumn of 2008. I was overweight (very) but was eating healthily and had lost a pound or 2 each week for a few weeks. We thought things were going well but my tongue had this horrible white coating on it, which would break off in patches leaving red, raw areas of my tongue underneath. It was unsightly and painful too, as were the mouth ulcers I kept getting. No amount of nystatin would clear the "thrush" up, nor could we stop the mouth ulcers from developing. It got so bad that I began cutting foods out of my diet which seemed to trigger or exacerbate them, namely milk, bread, sugary foods and limited the acidic fruits I ate as much as I could - hard for someone who loved fruit. This continued through the early part of 2009, adding abdominal pain, early fullness, nausea and trouble swallowing. 

Although we did not know it at the time, I ate my last meal in March 2009. It was potato with baked beans, and I struggled to eat it, not even managing half. Between March and July I only managed to eat 1 small bowl of carrots per day, which were cooked until they were so soft that I could wash them down with fluid. My GP organised for me to have an abdominal ultrasound, which inevitably came back clear. When my symptoms did not improve, an endoscopy was arranged which was also clear. Biopsies taken at the time were, you guessed it, clear. We had no answers as to what was going on or why I was having such difficulty.

In August things took a turn for the worse. I was now eating nothing, drinking very little and in bed all of the time, exhausted. My mum used to come in to check on me fearing I wouldn't be breathing. I was admitted to hospital after a trip to A&E (ER) malnourished, severely dehydrated and with my kidneys on the brink of failing. I had lost 6 stones (84 pounds) in as many months, which took me down to a healthy weight for my height, and I think my appearance counted against me, as I looked healthy. After proving that I did not have an eating disorder, my paediatrician signed off on an NG tube to begin enteral feeding. I was started on medication to speed up my gut to help with the constipation, Movicol, Lactulose and Senokot, and the nurses spent a good few days flushing my body with fluid to get my kidneys working again. I came home a week later, NG still in place. 3 months later my PEG was inserted for long term enteral nutrition.

My problems didn't end there, however. The weight loss continued, albeit slowed right down, and I still struggled with pain, especially related to the feeds. I was needing ever increasing doses of Movicol to keep my bowel moving, and I wasn't tolerating my feeds very well. At the advice of my rheumatologist, who deals with my EDS, I was referred to a top Neurogastroenterologist called Professor Qasim Aziz. He specialises in unusual and difficult to treat gut motility problems, especially those seen in patients with EDS. I saw him for the first time in April 2010, and have been seeing him ever since. Tests he ordered, including a small bowel manometry, oseophageal manometry and barium swallow, showed generalised gut dysmotility. He gave me a course of erythromycin, followed by starting a daily probiotic called VSL #3 as he was sure I had Small Intestine Bacterial Overgrowth (SIBO). I was also started on Domperidone to help with gut motility.

My gut problems slowly continued to deteriorate, and I was losing weight more and more rapidly. We tried many different high calorie powders and fat emulsions to no avail. We also tried putting an extension through my PEG so I could be fed into my Jejunum (small bowel) but this was not successful either. 

By May 2011 my weight had dropped to 7 stone (98 pounds) - extremely low for my 6ft tall body - taking my total weight loss to 11 and a half stones (165 pounds) in less than 3 years. My red blood cells, white blood cells and platelets were low, as was my potassium, and I was very dehydrated. I was admitted to the hospital where my GI team are based (The Royal London Hospital in Whitechapel, London, UK) and was started on TPN on the 13th May 2011, with my Hickman line being placed a week later. After 5 weeks in the hospital I was discharged and we were trained in how to administer TPN and care for my line at home. My weight had steadily increased ever since; in fact, I've gone the opposite way now and need to lose a bit of weight. It's hard to believe I've been on TPN for over a year.

My gut was still causing me a lot of trouble and I kept ending up in the hospital with bowel obstructions. The decision was made to have an Ileostomy formed, and so in February this year I had the operation to form the stoma. It was definitely a step in the right direction; my surgeon said that it could only be one more obstruction until my colon perforated. It was so severely impacted because nothing was moving. I was taking 36-40 sachets of movicol every week to try and flush it out but it was going around the impaction instead of clearing it. Even the dreaded bowel prep did not work.

Unfortunately my small bowel keeps "obstructing" (pseudo-obstructing, there is no actual blockage) which keeps landing me in the hospital. They usually have to put a catheter through my stoma into my small bowel to drain it off, give me IV fluids to replace what I've lost and monitor me before sending me home. I am currently waiting to see my team, possibly as an inpatient, to decide how we move forward.

My bladder is also affected by both EDS and CIP, it holds up to 2 litres and I have a constant UTI which we cannot seem to get rid of. I have just been started on a 3 month antibiotic course, which will alternate every 2 weeks between different antibiotics, and I might be having Botox injected into my pelvic floor to try and help me to go. I currently self catheterise when I am unable to urinate, but I don't do it as frequently as I should.

So this is my story so far with CIP. I am at the severe end of the spectrum, in intestinal failure, but I hope my story will help others. I want you all to know that you are not alone. I have met some wonderful people through my illnesses, and despite the many downsides to this illness I can say, with my hand on my heart, that I have had some wonderful experiences. I regret that I am too ill to pursue a career in medicine, as I dreamed of doing, and that I am too ill to get back into education or have a career at the moment, but I am hopeful for the future.

May today be a good day for you.

For those who do not know about my other conditions, below is a description of what they are.

Ehlers Danlos Syndrome is a connective tissue disorder caused by a defect in the protein collagen. Collagen provides the structural framework for the body, connects body tissues (e.g. tendons, which connect muscle to bone), protects the organs and stores energy. It is often described as the "glue" of the body and is present in bone, organs, blood vessels, cartilage, muscles, tendons, ligaments and corneas. When there is a defect in collagen, connective tissues are weak and stretchy. Think over chewed chewing gum: when you stretch it, it does not spring back; it tears easily; and the more you stretch it the weaker it gets. It causes joint hypermobility, joints that dislocate easily and frequently, low muscle tone, early osteoarthritis, flat feet, joint deformities, weak blood vessels, bowel and bladder problems and problems with vision, and many more problems which are widespread and can be debilitating.

Secondary to Ehlers Danlos Syndrome I have a form of Dysautonomia, which is dysfunction of the autonomic nervous system. The autonomic nervous system controls all the unconscious functions in the body: heart rate, blood pressure, digestion, temperature regulation/perspiration, respiratory rate, salivation, urination and sexual arousal. The form of Dysautonomia I have is called Postural Orthostatic Tachycardia Syndrome (POTS), which is an increase in heart rate of at least 30 beats per minute upon standing or changing posture, often accompanied by a drop in blood pressure. It means I spend a lot of my time laying down, as my body doesn't cope well with sitting up and I can only stand to transfer with help. I am on medication to control this, but they have not had the desired improvement.