Please note: I am not a medical professional. I am only sharing my experiences. Please seek medical guidance before making any dietary or lifestyle changes.
Hello all! If you haven't already read part one of this topic, please do so here: https://www.gphealthandwellness.com/post/unspoken-topics-of-gastroparesis-part-one
In part one I talked about depression and anger, relationship impacts, forgetting what food tastes and smells like, doctors dismissal, and the fear of trying foods again. All very important topics to gastroparesis and really any chronic illness! But, there are defiantly more topics that many people don't like to discuss... so let's get into it!
6. Fluctuating bowels: This is a topic no one wants to talk about because it's "embarrassing"... but the reality is that everyone reading this has already had trouble with their bowels at some point in their life and I'm sure it also will happen again! Gastroparesis causes a majority of GP patients moderate to severe constipation. This is due to the standard GP diet being low in fiber.
Doctors will tell you to eat very little fiber and then when you get constipated they will put you on a stool softener or laxative. Relying on stool softeners is not how anyone wants to live and it can also cause further issues down the line... definitely not something I want to be taking repeatedly in my early 20's.
When I get questions about GP constipation I always tell people to talk with their doctor about magnesium citrate as an alternative option to an over-the-counter laxative. I also recommend that people increase their water consumption. Even if you think you're hydrated, I guarantee you're not. Most people aren't getting enough water each day and that has a huge affect on your bowels! Starting off with something as small as drinking more throughout the day could be all it takes for you to be more comfortable. Now, if you are having a hard time drinking enough for whatever reason, you need to talk with your doctor! Being dehydrated is serious and it can have a great effect on a lot more than just your bowels.
Apart from constipation, there are many people with GP that end up getting diarrhea or a combo of the two (almost as if you have IBS). This topic is interesting to me because we typically have a low fiber diet.
(I am not a doctor of course,) but what I have read is that you can have "dumping syndrome" as well as gastroparesis, or have bouts of it at the same time. Personally, I relate diarrhea with liquid diets and anxiety. Many of us with gastroparesis have dealt with anxiety/nervousness (or still do), which definitely can lead to diarrhea. Definitely talk with your doctor if you're having this issue because there are many things you can do to help whether it be medication or mindfulness techniques. Belly breathing and acupuncture has helped my anxiety quite a bit over the last couple years. I also highly recommend maintaining a daily routine - that alone can make such a difference.
7. Chronic fatigue due to lack of nutrients: We are all very aware that gastroparesis heavily affects our food intake. Along with that, it of course affects the amount of nutrients we receive. Not just because we eat very little, but we also are not absorbing as much as we should be with the food we are getting down. This can be due to a couple reasons from; the food sitting in your stomach too long, to people vomiting.
Having low nutrients does a lot to a person, and one thing it very much affects is ones energy levels... it's like we need food to live or something... crazy! haha
Weakness, hair loss and constipation are also caused by nutritional deficiencies. I cannot stress the importance enough of speaking with a nutritionist, dietician, naturopathic doctor, medical doctor, etc. on how you can increase your nutrient intake. I went through months of hardly eating anything before I finally realized that I needed to do absolutely everything possible to make sure I was getting the nutrients I needed each day. By taking action I began to feel SO much better after a couple months! I went from not being able to walk a block, to walking 2 miles at a time and feeling like myself again.
8. Traveling difficulties: Most people at too consumed in their illness that they forget about traveling all together. Of course the pandemic has put a halt to most travels the past year+, but the thing I want to point out is that you can travel while having gastroparesis. The only thing you really need to make sure you do is spend time planning ahead, and being smart.I have an entire blog post on tips for traveling you can check out if you decide to plan a trip. I have had my fair share of trips with GP, from going to Europe and China to camping.
Traveling is hard for sure, but not impossible and 100% worth it! Look at the food/restaurants around where you're staying, look for public bathrooms, for convenience stores, look for medications for nausea or constipation, etc., in the area you're going to in case your run out or need to pick something up. I remember being in Belgium and struggling to find toothpaste because the tubes were different and the packaging was in German or French. Plan plan plan, and you will be just fine!
9. Family/friends judgment and comments: Comments and judgment from family, friends and even strangers is one thing we all experience but I can't stress enough how you can use it as a teachable moment. I am constantly commenting on how my family can better their digestion so they don't end up like me. When I'm with my niece and nephew all I see are little digestive systems running around. One has a tummy ache and I think about how I could help them; what natural remedies there are, how much water they drank, what food they ate, how much running they did after eating, etc. Use any comment or judgment as a teaching moment.
- "Ew why are you eating dinner, it's only 5:00?!"... "Because it's better on my digestive system to eat well before bedtime. I need to eat early so that I don't get nauseous at night/in the morning".
- "Wow you're so skinny, you need to eat more"... "I am eating everything I can, but my diet is limited and my body isn't absorbing properly right now".
- "I wish I could be as skinny as you!" ... "I'm not loosing weight by choice, my body is having a hard time right now".
Does every occurrence need to be a teaching one? Not at all. Do you have to be nice to someone when they make a rude comment or continues to comment/push when you've told them not to? No. Do and respond how you are most comfortable with, just know that every one of us receives comments and judgment that we don't like. It's hard sometimes to let go of the rudeness, but the less stressed you have the happier your stomach will be! Try to hold on to that.
10. Pregnancy: Oh the joy and fear pregnancy can bring. The reality is that it tends to be drastically exacerbated when you have GP. I in no way am looking to get pregnant anytime soon, but how a pregnancy would go for me has definitely been on my mind. If any of you are pregnant, thinking of getting pregnant, etc., there is a Facebook support group for GP pregnancy. I usually would never recommend a GP support group (I honestly hate them because of the horror they can bring/the constant "negative nelly's" and "debbie downers" every. single. day. on them), but I do recommend the pregnancy one just because it can be a pretty foreign realm. I have joined it just for the fact that one day I will have a kid, so I do enjoy being "informed" every now and then. The group is mostly individuals asking questions on how to help their nausea or what to eat, but there is the occasional story or two of a women giving birth, how it went for them, etc.
Everyone is different. We all know this and it is very much still true even with GP pregnancy. You cannot compare yourself to anyone else. There are many people with GP that have an "easy" pregnancy (hardly any symptoms at all). Other's say they were really sick during the entire 9 months, but felt amazing after. This can happen regardless of GP, so it really doesn't say much. But if you're still worried, I would most definitely talk with your healthcare provider and join a support group.
11. Joint/muscle pain: This one thankfully didn't affect me as much as it does many others. Right before I was diagnosed I lost about 30 pounds in a few short months and at that time my biggest complaint was stomach pain- so bad that I could hardly think about the way the rest of my body felt. But for many, the pain that comes from the lack of nutrients and exercise can be chronic. Whether it be back pain or leg pain, I have received many messages of people asking me what they can do to help the pain they are feeling. My first suggestion (as always) is for them to speak with their doctor. You can also talk with your nutritionist, chiropractor and most definitely an acupuncturist about it. The lack of food and movement can really mess with your body/muscles. Unfortunately it is a pretty common symptom/reaction but this does not mean you have to live and suffer in pain!
I can't stress the importance of talking with your healthcare professional about any concerns you have regarding your Gastroparesis. You are in control of your health! You are the only one that lives with your body each day and the only one who knows how you truly feel. YOU are the only one who knows when enough if enough... but why wait until then? Preventative health is immensely important.
Let me know if you would add anything to this topic! I feel like I could go on and on about what I've had to learn over the past couple years... it would be too long to type!
Stay healthy,
Loreal
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