how i live well with gastroparesis | 10 things that have helped me cope with my chronic illness
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- Опубликовано: 28 авг 2024
- Hi friends! In today's video I share 10 things that have helped cope and live well with my chronic illness, gastroparesis.
For the first couple years of dealing with my GI symptoms and my diagnosis of gastroparesis, I struggled a lot. My whole life and what I thought my life was going to be like had changed. It was a lot for me to take in and I struggled both physically and mentally.
However, over time I have learned different coping strategies and realized that I am still capable and deserve happiness and fulfillment in life despite my illness and I wanted to share what has helped me learn that!
I know that we all have different situations and are effected differently, so what worked for me may not work for you and I am very grateful for the situation I am in. It makes me nervous to share these things because I really don't want to offend anyone or this to come across as toxic positivity. I am not perfect, I still struggle a lot but I have been asked before how I stay positive and deal with my illness so I wanted to share what I have learned over time and my experience in hopes that it just may help one person. If you have any tips that work for you I would love for you to leave a comment so we can all help each other! Your experience may be different than mine but be similar to someone else's and your story may help!
Anyways, I hope you enjoyed the video and don't forget to give this video a like and a comment and to subscribe for new videos every Saturday! And as always, don't forget to spread kindness and joy!
Products in this video (affiliate links):
Sewing supplies
✩My sewing machine: amzn.to/2TMYVRR
✩My serger: amzn.to/2TBeb3Z
✩Sewing clips: amzn.to/2T5Mhgs
✩Cutting mat and rotary cutter: amzn.to/3iiJ9Z7
✩Iron: amzn.to/3xPulFe
Miscellaneous
✩My feeding tube backpack: bit.ly/3ghPpxs
✩Bed wedge: amzn.to/3fVEhrj
✩Apple watch band: amzn.to/2RuBWdu
✩Papasan chair cushion: bit.ly/3gqeiYR
✩Desk chair: amzn.to/3ym4bup
✩My instagram: kenna.krueger
✩For business inquires: makennakrueger@gmail.com
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Music
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#gastroparesis #chronicillness #feedingtube
Just wanted to share some of the things I learned over the years living with Gastroparesis, I hope this helps even if it’s just a little bit!! If you have any other video ideas or topics you want to know about let me know! Thank you all for being here!💚💚
Thanks for this useful video!
On the subject of finding little things to bring joy, the little sloth figurine behind you brings me joy whenever I see it in the background! :)
Great vide! You've gained so much wisdom, thank you for passing it on and staying positive!
Your strong coping skills & dedication are amazing! Keep going girl! 😊
These are really helpful tips! Crohn’s disease is the worst of my three autoimmune diseases and I think these can really relate to any chronic illness. Yes, everyone’s experiences are so different, but don’t be scared to share things like this, because they are so helpful and help people feel less alone!
I think another really important thing is educating people you are around a lot, or close with on your illness. It is very helpful when they know your symptoms and how your disease affects you.
I also don’t think some people understand how much chronic illness can effect your mental health, but it does so much. I actually picked this topic to write a paper on in school, because I feel like it is something that is so incredibly important, but hidden a lot of times.
Kenna, I love your videos so much! They really inspire and help me feel recognized and understood.
Thank you so much!! I am so happy to hear that these tips may help and relate to other chronic illnesses!! Thank you for easing my anxieties, I had hope that it would help but definitely had a lot of self doubt. Yes yes yes to the educating!! That is so important and definitely sharing the facts of my condition, how it effects me and what type of help/advice i would want vs not want has been super helpful. That is such a good topic to write about and I am so proud of you for opening up and choosing to write about because how chronic illnesses effect your mental health is incredibly important and hidden for a lot of reasons. Thank you again for all of your support, you are the one who makes me feel recognized and understood!!
Thank you for this. I found it really helpful.
A couple of things I never say to people with Gastroparesis, or any illness, is to stay strong & that they're a warrior. I never unerstand why some people say that, as to me it doesn't help. No one should feel that they should be strong when going through pain etc.
I also don't vomit but my GP symtoms are still really bad. Sometimes tho I sort of feel guilty when others say that they do.
If possible, please do some more videos like this.
Take care. x
Yay I am so happy it was helpful! I definitely still struggle with feeling guilty for not vomiting which is such a weird thing to feel when you really think about it but we just have to remember that we are all individuals fighting our own battles and what we go through is still valid even though it is different than what other people go through. I definitely want to do more videos like this and I have less anxiety around them now since I have been getting really positive feedback on it. You all are the best!
I wish I had your attitude Kenna. I just got diagnosed and it’s scary. Thanks for your video😊
Thanks for sharing! I have to be careful about the spending money on things to feel better, since I had a bad shopping addiction many years ago. Since I didn't have control in my life because of my health issues and other things going on in my life, the control I felt in clicking and buying things and having them arrive at my house was too much of a draw for me, and I got to a point where I had to have that "rush" over and over. It turned unhealthy and damaging for me, unfortunately.
You’re welcome! Yes haha definitely be careful but that is a very valid response to the situation you were put into but I am so proud of you for overcoming it. We all cope in different ways and what matters most is that we just do what is best for us!
I found your channel in august when I was diagnosed with gp. Because I don’t really have friends that understand or who to talk to seeing you really helped me learn & understand and just bring a lot of positivity. Also I know zofran makes me constipated for weeks . Phergan makes me pass out. And I understand the food I made cookies and tried to make them soft with ice cream I mushed them up it hurt but whatever 😂
Aww yay I am happy I am able to help! You are definitely not alone in this journey, we will get through this together!💚
Even when I explained it to my friends they still don’t understand how difficult eating is.
@@babiesbytheshore7816 exactly ! And family like I’m not at the point where I can eat like regular solids I’m majority liquids and really soft foods and still I’m dealing with vomiting bloating nausea , choking, and like it’s frustrating
Hey I also have Gastroparesis but I have the Gastro Pacemaker idk if somebody told you about it but it really did help doesn't solve everything but you are able to live.
i just got diagnosed with gastroparesis and i just want you to know that your videos help me so much
Aww thank you so much! You aren’t in this journey alone💚💚
Great video, I could relate to every point. Finding others that know what you’re going through definitely helps. I remember crying so much watching your gastroparesis story because I felt so validated cause someone else knew what I was going through and spoke about symptoms I thought were “all in my head”. You were the first person I came across that has idiopathic GP like me and had the gpoem (mine has failed also, but I can maintain some fluids now so it wasn’t all for nothing)
Thank you so much! I am so happy my video was able to provide validation because I never realized how important that was until I also thought all my symptoms were in my head. I also don’t regret my gpoem at all! I had a few months of bliss and I can eat a little bit more now than I did before the surgery, I think haha. Thank you for supporting me and being there for me🤍
Thank you for making these types of videos. As someone with a rare disease that there's no cure for I understand how much of a struggle every day can be. it really sucks when everyone around you is healthy and doesn't have to worry about all the things that we do. It's stressful when other people don't understand your condition or what you have to deal with. Hang in there :)
I loved this video! You opening up to us all helps so many. It shows us we are not alone and we what we go through is normal. You have no idea what it means to me that you open up and share. Nobody else gets it. Not even my docs usually! Love ya girl!!!
Thank you so much, that means a lot! Opening up has allowed me to connect with so many people and realize I am not alone as well. Thank you for the never ending support💚
Thank you for sharing! It really helped me, especially the part about comparison. I often feel guilty for feeling upset about being sick because I know my symptoms are not as bad as others. It's something I need to work on 😅
Aww thank you, that means a lot!! Comparison was and still is a big challenge for me, especially when I put these videos out. I know I am so lucky for how my condition effects me and that is could be so much worse, so I often feel as if I don't deserve to talk about my condition since I am still able to do a lot of things, but I think it is also equally important to show the many different sides of gastroparesis. In addition, even if your symptoms aren't as bad as others they are still valid because they still affect you and bring a lot of discomfort to you! It will always be a work in progress but being aware is the first step towards working on it so keep it up!💚
@@KennaKrueger thanks for the encouragement! 💚
@@MikanWakana you are so welcome!!
your positivity never fails to amaze me. great video! 💚
Thank you!!!💚💚
Thank you for your videos Kenna! I have IBD and i get inpired by your positive attitude.
You are so welcome!! And thank you!!
I also have IBD, and even though it isn’t the same as GP, I love learning about other illnesses and Kenna’s positivity is honestly contagious
I feel the same way about worrying about the future. At times I can get so worked up I panic ! But, like you said ... I have to calm down and take it moment by moment. 👍🏻❤️
yes exactly, one step at a time!!
Ah the food one reminds me of how I have to explain my choices to people haha. I'm undiagnosed (seeing gastro doctor for the first time next week!!) so have no idea why, but almost everything I eat gets thrown back up, and even the two foods that I can usually eat (ritz crackers and boiled sweets) cause bad other symptoms. But sometimes I'll eat like, a chocolate bar, or a tiny bit of sushi - and people are often confused as to why I would when it causes such horrible symptoms. It's just keeping that relationship with food, and also mental health cause gosh sometimes I just want chocolate or sushi!
ooo good luck with your gi appointment, i hope it goes well!! But yes exactly that! It is tough learning to balance mental and physical health with a gi disorder but like you and many others, i found my mental health and relationship with food is best when I have those occasions where I just deal with the horrible symptoms so I can actually have some type of normalcy.
Hey kenna yes yes yes thank u for talking about how people who don’t have feeding tubes with gastroparesis still have gastroparesis and are symptoms are all different thank you for making this video and this helped me so much and for me eating baby foods help a lot the dissolving ones
aww of course!!
❤thank you
Very helpful tips! Just what I needed, thank you! Just a quick question, how did the gpoem procedure go?
Thank you! I had the GPOEM about a year and a half ago. For me personally it was a simple procedure and I had no complications. Recovery was pretty quick for me as well. I did get relief for a couple months but all my symptoms came back a few months later. However, I don't regret getting it. I really wanted to give it a chance to see if it helped my gastroparesis and I gave it everything I got and for that I am happy! For some people it helps them longer for others it doesn't help at all. Each person is different with the surgery from recovery time to how it effects them!
I was born with GP due to other digestive tract birth defects, no esophagus and the stomach nerves didn’t form. 9 surgeons from 6hrs old to 5yrs old to make an esophagus. My feeding tube was taken out at 5 ajd I was able to eat by mouth until I was 18. I’m 26 now and have a g tube and j tube they are separate. The only things I can have by mouth must be drained. So I have a lot of Starbucks frappes, Tim Hortons iced caps, and popsicles any time I need to chew a food I eat popsicles I go through a box of 24 every 2 days.
I have 8 other chronic illnesses including asthma with 31% lung function needing a double lung transplant, chronic pain, mast cells activation syndrome and more. I’ve had 14 surgeries, 1 was scoliosis surgery the rest as been stomach and esophagus surgeries. The first 9 1995-2000 and then 2013, 2018-2020. Thankfully I can change both tubes at home
oh my goodness you have been through quite a lot, I'm so sorry!
These are great ideas! I do some of them already (crafts). I am scheduled to get a g/j tube placed in november. Do you have any suggestions for what I may need to purchase to be prepared? Any tips on surgery recovery? I will be visiting you etsy shop soon!
Thank you! And good luck with your surgery!!
Some things that I like to tell everyone is that it is going to be painful at first, probably more than you expect but it will get better. The first 2-3 days are rough (in my situation but everyone is different), but it truly got better each day. I usually don't take ibuprofen but I did for a week or two after surgery because just tylenol wasn't enough. Obviously consult your doctor on what medications you should take but like a lot of people do, I rotated between tylenol and ibuprofen and stuck to a schedule for a little bit. As the weeks went on a I began to feel less and less pain, i tapered off the ibuprofen and then the tylenol.
My next tip is just to be diligent with flushing, especially if you are going to flush medications down your tube. And flush slowly, especially at the beginning because your intestines have a lot to get used to!
Also don't wear tubie pads until your stoma has healed. Each person and doctor recommendation is different, but just stick to split gauze at the start.
Your feeding tube supply company they will set you up with should have all of your supplies. Something I highly recommend getting from your supply company that they may not automatically get you are grip locks! I wish I would have had those for when I had my dangler tube. It helps prevent a lot of snugging and pulling. The only thing my supply company does not have and I order on my own are those long single sided cotton tip things I use to clean around my tube.
I am not sure if you have had a nasal tube before or not but finding the right formula and rate best for you is going to take a little bit. Remember, everyone is different and can tolerate different things. Consult with your doctor and dietician to find the formula and don't be afraid to ask for a different one if the one you are currently on isn't working.
This is all I can think of for now but if I think of anything else I will let you know! Oh and also, don't be afraid to find ways to make things more fun! Like with tubie pads, tubie clips, decorating your iv pole, etc. This isn't an ideal situation but there are ways to make things a little bit brighter. I hope this helps and good luck!!
Wow! This is very helpful! I never had a nasal tube, my GI feels my gp will not improve and decided to go right to the gj. My dietitian has formulas in mind already and now we just need to get insurance to cover it. (Insurance is so frustrating!). I will ask about grip locks. Thank you so much!
@@loislaine2762 Yay that makes me happy! I feel that is very valid, that is why I did not get another nasal tube before my gj tube placement because we knew this would be a long term thing. Insurances are so frustrating when it comes to formulas. If you can't get it covered, nestle has an assistance program and I am sure there are some other assistance programs as well. I also know some Facebook groups have it where people donate formula and you just pay for shipping which is what I will look into when my formula runs out. You are so welcome and good luck again!
Thank you for letting me know about the nestle program. It is horrible that insurance companies can prevent people from getting proper nutrition.
What are the foods that you eat even if it’s not safe but just for the sake of ur mental health?
Can you put up a video or link me to one on how you spoke to your dr about your symptoms ? I’ve been writing down my symptoms, but don’t know how to go to my dr about it all
I don't really have a specific video on how to do this but writing down your symptoms is a huge start!! I would honestly make a copy of it as well so you can give your doctor a copy just in case he/she wants one. There isn't really much else you have to do other than to be like here are some concerning symptoms I have been experiencing, here are how they are effecting my daily life, is there something we can do to figure out what this is and treat them. If your dr doesn't have suggestions, you can also suggests things. It is scary but something that just has to be done. Your health is important and you have the right to bring up concerns, questions, suggestions etc. I know it is a lot easier said than done but now that you have all your symptoms written down you just have to bring them up to your doctor. You can do this!!
@@KennaKrueger thanks Kenna! It’s a scary world. I had my gallbladder removed back in July. My husband agrees that these are similar but also different symptoms. He’s worried also. I’m just nervous to go back and say “well, I’m having Similar symptoms again, just more of a pattern emerging” and hope she doesn’t brush it off.
Watching your videos do help me however 😘
I know talking about the same symptoms after you had a treatment that was supposed to help is so scary. I had a similar experience after my GPOEM and was told I shouldn't have gastroparesis anymore because I had that surgery which isn't true so I just had to keep advocating. If your doctor doesn't bring it up I would suggest the gastric emptying scan because it is a pretty easy test to run. Also, not saying you have gastroparesis obviously but a lot of people have similar stories where they had the symptoms, got their gallbladder out, and then had similar symptoms and found out they gastroparesis. Definitely something to consider! Just keep reminding yourself that advocating for yourself will ultimately get you to feeling better because you will have treatment options once you find out what is wrong!
That's a great video idea! A lot of people, including myself, have had difficulties in speaking with doctors. It's difficult to know which symptoms are relevant, or how to describe things.
@@KennaKrueger I spoke to my dr today! She believes I do have gastroparesis, she’s trailing me on some motility medication and then organising a gastric emptying span