Article on Gastroparesis

By: Carissa Haston


G-PACT President/Webmaster/Founder

Please feel free to share with loved ones who may not understand!

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.

G-PACT is a non-profit organization for Gastroparesis and Pseudo-Obstruction. I have gastroparesis. I had a PICC line for TPN for 2 years. TPN is nutrition through a permanent IV (PICC). It kept me alive that's for sure since I can hardly eat. Since November of 2009 I have been TPN free! I now have a j-tube. I have a g-j mickey. Thankfully, it's low profile which means I don't have a tube hanging out of my stomach. I just use extensions. Anyway, the tube goes through my stomach and down into my small intestine. That way it totally bypasses my stomach. I get and elemental formula - it's basically predigested food. Smells like baby formula. lol I feel so much better with my j-tube compared to TPN.




I'll have to take some pics of my bag and supplies and stuff so you can see what I'm talking about. Hope Carissa's article helps you understand what GP (Gastroparesis) is.

Gnocchi!

I made gnocchi!!! I've wanted to for years ever since I saw it on Food Network. I got Tyler Florence's recipe. So here are 2 lbs. of baked potatoes cooling. I had to peel the skins off and then out them in a food mill. Well, I don't have a food mill so I saw another recipe say that you can use a cheese grater. I did not recommend that!!! Oh my goodness, my hands were killing me. They were tired and achy and burning. But I got some super smooth potatoes! lol

Then I added the egg white, flour, salt, and baking powder. Then you dust the counter with flour and knead the dough a little. You take off a chunk and roll it into a log about an index finger thick. You cut off an inch from the log, roll it down the fork, and make it a crescent shape.

So here is the gnocchi boiling. It only takes a minute or two to cook. But it took me 2 hours to make! LOL By the time I was done, I had flour all over my pants and the arms of my chair. Plus, the kitchen was a WRECK! It took me 20 minutes just to clean up everything. Even though I was coated in flour and surrounded by a mess, I had a huge grin on my face. Go figure. :-D I don't think I'll make these again unless I get a food mill. So I was exhausted the rest of the evening. I just watched HGTV and the O'Reilly Factor until I went to sleep at 10:20. I did nothing for 4 hours. The consequences of making gnocchi. lol But by all means, try your hand at it! My husband loved it. :-)




Ok, instead of noodles I added the gnocchi to this meal. The spinach was supposed to go in the meal. But I forgot with all the gnocchi craziness. :-) It's just basil chicken with tomatoe sauce, diced tomatoes, neufchatel cheese, and mozzarella cheese. Ben liked it. Next time I'll do noodles. :-D

Whew, at least I've accomplished another culinary challenge. I'm still worn out.....

Art

This picture shows the slipcovers I made for my pillows. My friend taught me to sew, and this is the first thing I made. I love it!!! I bought the tan curtains at Ikea and mixed them with my red curtains. Looks very cafeish, I think.


Ok in the picture above, I'm wearing the apron that I made. It was the second thing I sewed. :-) Just last year I could hardly get on my knees, but now I'm stronger! Soon I will be walking.... Just wait and see. :-)

I painted these for Valentine's.

A friend commissioned me to paint this banner. It's for doors, but you can hang it on the walls in your house if you want.

My nurse asked me to paint this for her. She loved it.

My fall banner.

This is for a cubicle so it's smaller.

I painted these as Christmas gifts.

I painted this as a thank you gift.

My Valentine's banner. I need to paint my spring banner!!!

So here are the banners. I'll have to put up my most recent paintings I did for the house. Maybe tomorrow. Ben is out at the range all day today. I'm hoping to make gnocchi tonight. I've never made it and have been dying to try my hand at it! I'll try to post it. :-)

Oh, I signed up for a quilting class!!! It's in April when Ben is at JRTC. So I'll be able to be around people for 2 hours a week. Yay! Besides doctor visits. Yuck.... :-)

Well, I need to get ready to talk my doggie for a walk. She loves her walks.

Kids

I have always wanted children. When I was little I played house every chance I could get. I dragged my dolls everywhere. Like the store and trips of any sort. I bought real baby clothes for my dolls because I wanted them to look real. I would put them in the children's seat in a shopping cart. I remember several times when people really thought they were real kids!!! I always got a huge kick out of that. :-D Two dolls were my favorites - Laura (who was a Thumbelina doll) and Emily. She was a talking doll. I pretended I had six kids. Yes, six. lol My dream in life was to get married and have tons of kids. I don't know if being the youngest of five had anything to do with that or not. My first dream became reality. I got married to a wonderful man. He's God's answer to my dream. :-)

Now my second dream is another thing altogether. Doctors have told me that I could have a kid! Finally! I was jumping up and down with joy. If you could imagine.... Well, I started having irregular periods. I got concerned, and today was the BIG day. I got to see a high risk doc! Well, the long and short of it is that they said I could not have a child right now after the one doc had talked to me for an hour and it sounded so promising. I have too many risks for me and the baby. I didn't want to cry in front of them. I tried hard to be brave. God helped me get through it. The one doc did say that the medical world advances fairly quickly, and who knows. I may be able to have a kid one day. Like that helped. So I managed to leave without bursting into tears. I waited in the lobby for the HOP (a special transportation bus) to pick me up and take me home. It took me more than an hour to get home because of the other three people getting dropped off.

But by the time I got home I had stuffed my emotions too deep to bring out. I didn't do much all afternoon. I did update my blog while talking to my best friend. She helped me a lot, but I didn't outright bawl till six this evening. I sobbed and sobbed until I couldn't sob anymore. I felt sick and dizzy and wanted to throw up. I felt so weak and empty. Ben held me the whole time. I sobbed out that I couldn't get pregnant. He just kept holding me. After I had cried it all out, I told him what happened. He said that there is always hope. God can give me this desire if he chooses. I said I can't hope. It will hurt like this again. I told him to hope for me.

But one thing I don't want is to turn bitter and hateful because I can't have kids. I don't want to turn against God. I love Him, and I know He loves me and cares for me. I just want to trust Him through this. And yes, I know He can give me a child one day. That's a fact. I'm praying God gives me some hope. I want to have God live through me every day of my life. Even now! But I will say that I have never hurt so bad in my life. This has been hard. It has been an emotionally draining day.

I've always wanted to adopt. I'm praying that God will lead us to know if and when we should. Please pray with me.

I'm off to bed now.

Fun Surprises

A couple of weeks ago was a "I hate being handicap!" day. Everything just seemed to go wrong. If I could only walk or be stronger then life would be so much easier! It was so annoying!!! Anyway, Ben's brothers flew from NC to stay with us for the weekend. We decided to go bowling b/c it was something cheap to do. I was sad that I wouldn't be able to play. I love playing, but I think the last time I got to play was when I was 8.

Well, William was like hey, you can use a ramp. I was like what?! Well lo and behold, a ramp is what a kid uses to bowl. It's 2 rails hooked together, but the middle of it is empty so you can place the bowl on the top and then push it down. The only thing I have to do is position it, Ben would place the balll on there, and then I would push it down. It took me the first game to figure out how to position it, but then I got several spares and a strike!!! I actually won that game. :-) I know I technically didn't win fair b/c what I did was easier than if I threw the ball myself, but still I DID IT!!!!!!!!! It was awesome!!! :-D I just had to share this in case someone out there happens to come across this post who thought they could never bowl. Well, you can! So go out there and play a game and enjoy the thrill of participating in something that everybody else is. Priceless. :-)