As many of you know, Gastroparesis is one of the conditions I deal with due to my genetic condition. What happens with gastroparesis is that it makes my stomach be really awful at digesting food. Because of that, I use TPN and a bit of tube feeds in order to “eat”.

August is gastroparesis awareness month and, after having my blog for a few years now, was having a writer’s block on the topic. I didn’t want to blabber on about the same pieces of information i’ve shared over the prior years! On my Facebook page and Instagram, I asked my readers what you wanted to know about gastroparesis. I got lots of great questions (which I couldn’t all get to unfortunately but saved your question for later), here are the answers! I hope you can learn something new and interesting!

Q: What’s exactly happening in your body that causes the problem? Is it hereditary?

A: In a nut shell, I have Ehlers-Danlos Syndrome, a genetic condition. In our body, we have a bunch of collagen, a protein acts as the glue that holds your body together. EDS is caused by defective collagen, making it loose and floppy. Instead of our connective tissue being like an elastic that you can pull on and it snaps back, EDS collagen is like an old elastic that, once it’s stretched, doesn’t return to its regular form. Because collagen is found in huge amounts in our digestive tract, it has caused my digestive problems. Since my collagen is loose and floppy in general, it is also loose and floppy in my digestive tract, making it really hard for my body to push food through because the stomach muscles aren’t strong enough to push food through. This means that digestion takes a really long time, causing lots of pleasant (*sarcasm*) symptoms. That being said, gastroparesis isn’t hereditary but the cause if it in my case is.

Q: Are there different spectrums for gastroparesis or are the symptoms predominantly the same across the board? 

A: Yes, the spectrum of gastroparesis is quite broad. EDS is one of the rarer causes of it. Because, it can also be caused by viruses, diabetes, and surgery among other illnesses, the symptoms can vary greatly. Some people have more mild symptoms and can control their GP through diet changes or medication. Some people have it more severely and need artificial feeding through tube feeding or TPN. The most common symptoms are nausea, vomiting, pain, reflux, constipations/diarrhea, weight loss/gain, bloating, and lack of hunger, etc. Depending on the person, some may experience all of these and some may only experience one or two.

Q: Was there any warning that you would develop it? Psychological? Physical?

A: Not really. I had a bunch of physical signs growing up but I never thought much of those symptoms until things got worse a lot worse leading up to my EDS diagnosis.

Q: How did you symptoms start?

A: Looking back, since I’ve had Ehlers-Danlos my whole life, I see symptoms of gastrointestinal problems throughout a lot of my life. Back then, it was mainly nausea and bathroom issues. When I was in university, my symptoms started getting much worse with nausea, constipation/diarrhea, bloating, vomiting, reflux, and getting full very easily. I also experienced a lot of weight loss. There were other symptoms I had going on at that time but are related to other conditions caused by my EDS.

Q: Do you still feel hunger? Are you mostly in pain or does it come waves? Are you tired a lot? How’s your nausea?

A: I am fortunate to be someone with gastroparesis that doesn’t feel hungry. It would be so frustrating to always feel hungry and not be able to eat! I do have quite a bit of GI pain, usually it’s fairly constant but it does come in waves of sharper pains. Somedays are better than others. Fatigue is also an enemy of mine because I continue to be malnourished on TPN. However, since being on TPN, I only run tube feeds overnight so my nausea is better than it was. I still have a baseline level of nausea but it’s definitely better than when my tube feeds are running.

Q: Obviously in your case Gastroparesis cannot be controlled by diet, why?

A: In the very beginning, diet changes were the first things I tried. I did gluten free, low FODMAP, gastroparesis/low residue diet, and eventually a liquid diet. The problem with all these was that I couldn’t keep any food in my body so, even on better days when I could tolerate a bit more and hit a decent calorie goal, I wasn’t absorbing these calories. Also, because with gastroparesis your digestion is slowed down, I felt very full fast and would be uncomfortable bloated and ill after just a couple bites. I also tried medications to try to stimulate my digestive tract with some of these diets but still had the same issues.

Q: Can you eat anything? Can you drink? If you can, is it just water or can you have juices and smoothies?  

A: Following on the previous question, no food at this point. I can have some hard candies if they will dissolve completely into a clear liquid. Technically I could eat anything (barring the many things i’m allergic to haha), but it would make me very sick. I can drink a little bit but it’s mainly restricted to clear liquids. Only a daily basis, a drink some pedialyte or water with my meds but I’m not able to tolerate anything heavier or much more than 1/2-1 cup of liquids a day.

Q: What type of feeding tube do you have? How did you cope when you found out you would require the tube for eating?

A: Because I couldn’t get enough nutrition in on my own, it was decided that it was time to try tube feeds. Right now, I have a G-button that goes into my stomach and a J-button that goes into my jejunum, a part of the small intestine. Instead of a combined G/J tube, I had to have a separate J tube placed because I didn’t have enough motility (downward movement in the digestive tract) to keep the tube down. Coping with needing a feeding tube wasn’t too bad. It was a little bitter sweet because it was something I didn’t want yet it provided me with food and let me keep living. However, it can really impact your self-image; for example I wouldn’t wear certain tops because you could see my feeding tube through it. They also can be a little messy and stinky which would make me a little self-conscience. The biggest thing to cope with was less the tube and more not eating since so much socially revolves around food which i’ll talk about later. All in all, the feeding tube is a necessity so I just accept it’s being there and keep going.

Q: What brought them to use TPN? 

A: There were several factors that played into this decision. One was that I wasn’t tolerating tube feeds because of the poor motility in my intestines. Even though we were bypassing the stomach, I was still having a lot of pain, nausea, and bloating, all so severe that I could never get my feeding rate up high enough to get enough calories. This made us realize my intestines were part of the problem too. That leads us to the second factor resultant of the first; weight loss. I had hit my lowest weight since I had gotten sick. Lastly, I have a lot of issues with allergies coming from EDS as well. This prevented me from being able to use higher calorie tube feeds, leaving me only with infant formulas that were hypoallergenic leaving me in a very bad situation nutritionally. My nutritional levels in my blood work were very low and I losing muscle mass quickly on tube feeds. All of this lead to starting TPN.

 

Q: Also wondering why you ended up in a wheelchair? Assuming damage to your body from medications?

A: The reason I use a wheelchair is somewhat related but somewhat not. Because of my Ehlers-Danlos syndrome (which causes my gastroparesis), my joints are really weak. As my illness has gotten worse, my dislocations have gotten worse to the point I can no longer stand without my hips, knees, and ankles dislocating. My ongoing malnutrition from gastroparesis though hasn’t helped either.

Q: Did you think of a stomach stimulator? Do they do stomach transplants?

A: We have considered the stomach stimulator but it wasn’t the right option for me because it only helps the stomach but my intestines are affected too. It didn’t have a high enough success rate for surgery to be worth it to have it implanted. Stomach transplants can be done but very rarely and in extreme cases. However they usually transplant more than just the stomach; transplanting also the intestines, duodenum, pancreas, and liver as well. We have not discussed transplant as it’s highly invasive and risky however I suspect I wouldn’t be a candidate because of the healing complications associated with having Ehlers-Danlos Syndrome

Q: How has it affected you emotionally and socially? How do you cope?

A: Gastroparesis has had a huge effect on my life. As I mentioned above, food is involved in so many social situations so it can be really hard and sometimes isolating to not be able to eat. It’s something almost everyone has in common and can make small take about if needed. It also makes it hard to do things with friends because a lot of people hang out by going to restaurants and bars and it can be awkward sometimes. For the most part, I prefer not sitting at the table during meals but if it’s an occasion or at a restaurant I don’t mind as much. Gastroparesis also changed by life drastically; I went from being a very active and involved student to not being able to get out of bed. Through grieving my losses, I was able to come to a place of acceptance. One thing that has helped is listening to my body and taking its lead on things. I’m going to feel a lot better if I don’t push myself way to far! Having a good support system is an invaluable thing as well. I’m very fortunate to have supportive friends and family to lean on. Another important things has been taking care of my mental health. I do various things like art, meditation and journaling and also see a counsellor here and there. Keeping my mind healthy helps me deal with my unhealthy body! I could write a novel on this question haha.

Speed questions round

Q: Do you have a gastro “role model” you look to for inspiration and comfort? 

A: My friend Catherine deserves so much recognition for helping me through so much over the last few years! I have a few other people I consider role models but she’s the first that comes to mind.

Q: What is the one food you wish you could eat if you didn’t have GP?

A: Cheesecake!!! Sweets!! All the chocolate!!! Or some good Butter Chicken.

Q: The one thing you wish people understood

A: That even though I can’t eat and don’t have much stamina, I still want to do things and have friends! I may not always be able to go and may sometimes cancel at the last minute because my symptoms flare up but I like want to be included.

Q: Do you ever wish to eat like a normal person again?

A: Of course!

xo, Kathleen

have any questions? leave them in the comments below!