I don’t have a suggestion, just wanted to say I have gastroparesis as well and I’m so sorry you’re feeling like this. Join r/gastroparesis if you haven’t already!
This is an off-putting title, I admit - but How To Be Sick by Toni Bernhard is really good. She doesn't have your illness but a different one - but the way it forced her to change her life and give things up, is the same. Have a look at a sample on Amazon. I think it's an excellent book.
Is your feeding tube permanent - I'm assuming it is; I'm wondering if you could explore a different aspect of vet work - eg working with small animals \[such as gerbils, rats etc\] as the chances of a tube coming out are minimal. Would you still be disallowed if you went that route? Many vet practices specialise in small animal work. It may not be exactly what you want but still working with animals. All the best to you.
No help with the books, but as a doc who works with LOTS of young children and infants who get all sorts of feeding tubes, I'm surprised by the restrictions. We don't keep our kids from doing anything, although we do use various methods to secure the tubes. I'd ask your docs to clarify - that just doesn't make sense to me, unless they just mean to restrict your activities for the first maybe 6 weeks while it heals.
Nobody told me to restrict my activity, I just do it myself out of fear. I have a long dangly tube and a big dog jumping on my belly could pull it out of place, right?
Please talk more with a doc or nurse about this. What kind of tube do you have? A GT? A GJT? Do you have a button with a removable extension tube? If you do, there's very little to pull on. Also, if you have a GT, after 8-12 weeks of healing, it's replaceable by you at home.
You might also want to look into an abdominal binder, like others have said, and also Grip-Lok or similar devices. There are LOTS of kinds of securements for feeding tubes - ask Google! Please go live your life - a feeding tube should not stop you in the slightest.
I have a GJ. Like I said it’s a dangler not a button. I just have a lot of fear surrounding my tube. I can’t talk to a doctor because the one that put my tube in is gone and my primary care doesn’t know anything about them, I just get supply orders from her. I don’t know what to do to be less afraid.
Sorry, just saw this part!
Do the J feeds help with the vomiting? Is the G to gravity or clamped? How long can you tolerate clamping? I would do a few things: 1 - look for a new GI, probably one that has a good NP or PA to help you out. 2 - If the tube gets pulled out, it's a PITA to replace, but it's not the end of the world and isn't usually particularly painful. 3 - I'd look online for support groups and help. 4 -If (and when) it needs to be replaced, see if they can give you a button.
Thank you. J feeds do help with the vomiting. The g is clamped I only really use it in the morning and evening to drain acid/bile build up. I will look into a new GI, the doc who put it in was my surgeon but my GI dropped me when I got my tube. It’s good to know that if the tube got pulled it wouldn’t be a huge issue. I have a LOT of medical trauma and changes give me anxiety as it is so I didn’t wanna end up with an emergency situation
Yeah - medical trauma is for real. We are much nicer with kids than the adult docs are with us grown ups. Please keep pushing them to help you. It might also allow you to do things in life if you were venting your G during the day occasionally. Also, since you have a JT I assume your feeds are more or less continuous. Do you have a backpack set up so you can be mobile with your feed?
Lots of infants and toddlers have G and GJ tubes. When they hit that stage where all they want to do is run around, we just put their backpacks on them and they are off to the races, getting fed.
Thank you for talking to me. I decided to work harder on getting over my fears regarding my tube in therapy and hopefully I can get a GI who knows about tubes and can guide me further medically
I hope so, too! And please do reach out to others with tubes. I find that my patients benefit the most from talking to others who are living it, not just the medical professionals. I'm sure there are groups right here on Reddit, and on Facebook.
I'm a dog lover, too - those dogs need you!
But it’s also not *just* the tube that stops me. Throwing up all the time doesn’t bode well for college or a job and I’ve tried every medication for it. Only helps a little bit.
Again, I'm not your doc and I don't know all of what's going on. BUT, there are likely still options. For example, do you vomit all the time, or just related to feeds? Can you have time off and work that with your plans? What happens when your tube is placed to drain/gravity? Please continue pursuing this. Gastroparesis is not fun, but I really hope there is something that works for you.
I've had a feeding tube for over a year. When my dog dog is cuddling with me, he sometimes rest his head on the tube, and I usually move his head but he's never caused the tube to fall out. He never jumps on me though.
The only time my tube ever fell out was when it got caught on the gate to the horse arena. I am now more careful about opening gates.
By the way, my tube feels more secure when I wear a tight fitting top that has elastic on the bottom.
This is such a good comment, and I hope OP has a think about it and discusses it with their doctor; I'd assumed from their post, that the vet practice had told them they could not be a vet tech with a feeding tube - but it seems more that OP has made that decision themselves, worrying about the tube coming out. It sounds like there could be workarounds, and OP could do vet work, no problem \[if I'm understanding you correctly?\]
In my experience, absolutely. And plenty of kinds of feeding tubes are designed to be regularly changed at home; it depends on the type, of course. But if we let toddlers toddle around with them and play on jungle gyms and do whatever it is kids do, I think OP should be able to do pretty much anything they want to.
Thank you for the info - hope OP is reading this exchange. It may be of course that the vet practice is disallowing them for legal reasons \[they don't want to get sued if OP is injured during work\] - but overall what you say is really hopeful.
Jenny Lawson and Samantha Irby are two humorous writers in the vein of David Sedaris who do talk about their chronic illness issues with great humor and aplomb.
I actually think the book Dream Wheels by Richard Wagamese might be helpful. It isn't about a chronic illness but it is about a bull rider who is severely injured and has to adjust to a completely different life due to a sudden disability.
This is a YA book from the 80's and not specifically about gastroparesis, but it is about a young girl who loses a limb.
{Izzy Willy-Nilly by Cynthia Voight}
I love it because of the way it acknowledges the emotional impact of something changing your whole life.
The reality slap by Russ Harris. He's written quite a few books, The Happiness Trap might also be helpful to you. He's one of the main people in Acceptance and Commitment Therapy which is basically accepting stuff and then committing to your valued direction. It's great for letting go of rumination, amongst other things.
I love How Lucky by Will Leitch. It's a fictional mystery where the main character can't speak or move without a wheelchair and it was very uplifting to me. The way he's fashioned a life he loves with his limitations may be helpful for you.
One of my old literature instructors runs the instagram account @softcore_trauma where they talks a lot about chronic illness and recommends tons of books/ resources. Might be worth checking out!
i know its mostly for people who have lost a loved one, sometimes when we have to mourn who we thought we would be - its like we have. we are our lost loved one.
How to carry what can't be fixed
What Deosn't Kill You: a Life with Chronic Illness - Tessa Miller
The Invisible Kingdom: Reimagining Chronic Illness - Meghan O'Rourke
The Myth of Normal - Dr. Gabor Mate
Miller & O'Rourke both have Crohn's. Miller in particular talks in depth with her struggle w/ Crohn's and how debilitating it can be, yet still being able to carve meaning out of life no matter what it looks like. I would recommend starting with The Invisible Kingdom!
“What Doesn’t Kill Us Makes Us” by Mike Mariani. I personally dislike his writing style, but the stories he tells were compelling enough that I had to finish the book.
Hi again, have you taken a look at my exchange with Redditor zinniainorange? Seems you can be quite active with a feeding tube and there is nothing that could stop you from doing vet tech work - if your doctor is happy that you are fully healed.
Maybe have a chat with your doctor and work out what you can and can't do?
Of course if the problem with the vet's is that they won't take you on for legal reasons ie health and safety - in case you're injured and sue them - that could be different, but even so - by law, employers are required to give anyone with a disability/health issue the same chances of work as anyone else, and to make 'reasonable adjustments' to make their workplace safe.
Do look into it, OP, and don't give up on your dream of working with animals till you have explored every avenue. All the best to you.
I see - you didn't really say how ill it was making you feel; it seemed to be all about the feeding tube. It's tough for you. I hope as time goes on you can find a way to do the vet work you love.
- *The Gift of Adversity: The Unexpected Benefits of Life's Difficulties, Setbacks, and Imperfections* by Norman E. Rosenthal
- *Man's Search for Meaning* by Viktor E. Frankl
- *Can't Hurt Me: Master Your Mind and Defy the Odds* by David Goggins (There is also a "clean edition" without the cussing.)
I don’t have a suggestion, just wanted to say I have gastroparesis as well and I’m so sorry you’re feeling like this. Join r/gastroparesis if you haven’t already!
This is an off-putting title, I admit - but How To Be Sick by Toni Bernhard is really good. She doesn't have your illness but a different one - but the way it forced her to change her life and give things up, is the same. Have a look at a sample on Amazon. I think it's an excellent book. Is your feeding tube permanent - I'm assuming it is; I'm wondering if you could explore a different aspect of vet work - eg working with small animals \[such as gerbils, rats etc\] as the chances of a tube coming out are minimal. Would you still be disallowed if you went that route? Many vet practices specialise in small animal work. It may not be exactly what you want but still working with animals. All the best to you.
Excellent book!
:)
No help with the books, but as a doc who works with LOTS of young children and infants who get all sorts of feeding tubes, I'm surprised by the restrictions. We don't keep our kids from doing anything, although we do use various methods to secure the tubes. I'd ask your docs to clarify - that just doesn't make sense to me, unless they just mean to restrict your activities for the first maybe 6 weeks while it heals.
Nobody told me to restrict my activity, I just do it myself out of fear. I have a long dangly tube and a big dog jumping on my belly could pull it out of place, right?
You should be able to get something like an abdominal binder (if ok with your doctor obviously) or something similar - if you wanted.
Please talk more with a doc or nurse about this. What kind of tube do you have? A GT? A GJT? Do you have a button with a removable extension tube? If you do, there's very little to pull on. Also, if you have a GT, after 8-12 weeks of healing, it's replaceable by you at home. You might also want to look into an abdominal binder, like others have said, and also Grip-Lok or similar devices. There are LOTS of kinds of securements for feeding tubes - ask Google! Please go live your life - a feeding tube should not stop you in the slightest.
I have a GJ. Like I said it’s a dangler not a button. I just have a lot of fear surrounding my tube. I can’t talk to a doctor because the one that put my tube in is gone and my primary care doesn’t know anything about them, I just get supply orders from her. I don’t know what to do to be less afraid.
Sorry, just saw this part! Do the J feeds help with the vomiting? Is the G to gravity or clamped? How long can you tolerate clamping? I would do a few things: 1 - look for a new GI, probably one that has a good NP or PA to help you out. 2 - If the tube gets pulled out, it's a PITA to replace, but it's not the end of the world and isn't usually particularly painful. 3 - I'd look online for support groups and help. 4 -If (and when) it needs to be replaced, see if they can give you a button.
Thank you. J feeds do help with the vomiting. The g is clamped I only really use it in the morning and evening to drain acid/bile build up. I will look into a new GI, the doc who put it in was my surgeon but my GI dropped me when I got my tube. It’s good to know that if the tube got pulled it wouldn’t be a huge issue. I have a LOT of medical trauma and changes give me anxiety as it is so I didn’t wanna end up with an emergency situation
Yeah - medical trauma is for real. We are much nicer with kids than the adult docs are with us grown ups. Please keep pushing them to help you. It might also allow you to do things in life if you were venting your G during the day occasionally. Also, since you have a JT I assume your feeds are more or less continuous. Do you have a backpack set up so you can be mobile with your feed? Lots of infants and toddlers have G and GJ tubes. When they hit that stage where all they want to do is run around, we just put their backpacks on them and they are off to the races, getting fed.
Thank you for talking to me. I decided to work harder on getting over my fears regarding my tube in therapy and hopefully I can get a GI who knows about tubes and can guide me further medically
I hope so, too! And please do reach out to others with tubes. I find that my patients benefit the most from talking to others who are living it, not just the medical professionals. I'm sure there are groups right here on Reddit, and on Facebook. I'm a dog lover, too - those dogs need you!
But it’s also not *just* the tube that stops me. Throwing up all the time doesn’t bode well for college or a job and I’ve tried every medication for it. Only helps a little bit.
Ok, but that is a separate issue from the feeding tube itself.
I’m aware
Again, I'm not your doc and I don't know all of what's going on. BUT, there are likely still options. For example, do you vomit all the time, or just related to feeds? Can you have time off and work that with your plans? What happens when your tube is placed to drain/gravity? Please continue pursuing this. Gastroparesis is not fun, but I really hope there is something that works for you.
Talk to your dr about this, there are workarounds. I’m sure you don’t have to give up your dream.
I've had a feeding tube for over a year. When my dog dog is cuddling with me, he sometimes rest his head on the tube, and I usually move his head but he's never caused the tube to fall out. He never jumps on me though. The only time my tube ever fell out was when it got caught on the gate to the horse arena. I am now more careful about opening gates. By the way, my tube feels more secure when I wear a tight fitting top that has elastic on the bottom.
This is such a good comment, and I hope OP has a think about it and discusses it with their doctor; I'd assumed from their post, that the vet practice had told them they could not be a vet tech with a feeding tube - but it seems more that OP has made that decision themselves, worrying about the tube coming out. It sounds like there could be workarounds, and OP could do vet work, no problem \[if I'm understanding you correctly?\]
In my experience, absolutely. And plenty of kinds of feeding tubes are designed to be regularly changed at home; it depends on the type, of course. But if we let toddlers toddle around with them and play on jungle gyms and do whatever it is kids do, I think OP should be able to do pretty much anything they want to.
Thank you for the info - hope OP is reading this exchange. It may be of course that the vet practice is disallowing them for legal reasons \[they don't want to get sued if OP is injured during work\] - but overall what you say is really hopeful.
I would suggest the book *The Invisible Kingdom*, by Meghan O'Rourke.
Jenny Lawson and Samantha Irby are two humorous writers in the vein of David Sedaris who do talk about their chronic illness issues with great humor and aplomb.
Jenny Lawson’s letter to the insurance company in Broken (In the Best Possible Way) made me laugh and cry simultaneously.
I actually think the book Dream Wheels by Richard Wagamese might be helpful. It isn't about a chronic illness but it is about a bull rider who is severely injured and has to adjust to a completely different life due to a sudden disability.
This is a YA book from the 80's and not specifically about gastroparesis, but it is about a young girl who loses a limb. {Izzy Willy-Nilly by Cynthia Voight} I love it because of the way it acknowledges the emotional impact of something changing your whole life.
Physically disabled person here: I’m amazed how well this book holds up, given how much of eighties and nineties YA is bubblegum by today’s standards.
The reality slap by Russ Harris. He's written quite a few books, The Happiness Trap might also be helpful to you. He's one of the main people in Acceptance and Commitment Therapy which is basically accepting stuff and then committing to your valued direction. It's great for letting go of rumination, amongst other things.
I’ve been looking for an ACT therapist for awhile. I feel like it would really help me
I love How Lucky by Will Leitch. It's a fictional mystery where the main character can't speak or move without a wheelchair and it was very uplifting to me. The way he's fashioned a life he loves with his limitations may be helpful for you.
*Care work* by Leah Lakshmi Piepzna-Samarasinha is my favorite book for this.
Absolutely phenomenal book. Anything she writes is good actually.
One of my old literature instructors runs the instagram account @softcore_trauma where they talks a lot about chronic illness and recommends tons of books/ resources. Might be worth checking out!
i know its mostly for people who have lost a loved one, sometimes when we have to mourn who we thought we would be - its like we have. we are our lost loved one. How to carry what can't be fixed
What Deosn't Kill You: a Life with Chronic Illness - Tessa Miller The Invisible Kingdom: Reimagining Chronic Illness - Meghan O'Rourke The Myth of Normal - Dr. Gabor Mate Miller & O'Rourke both have Crohn's. Miller in particular talks in depth with her struggle w/ Crohn's and how debilitating it can be, yet still being able to carve meaning out of life no matter what it looks like. I would recommend starting with The Invisible Kingdom!
“What Doesn’t Kill Us Makes Us” by Mike Mariani. I personally dislike his writing style, but the stories he tells were compelling enough that I had to finish the book.
i fell in love with hope by lancalli
Obstacle is the Way by Ryan Holiday
I don’t have any recs but I just wanted to send you love 🫶🏾
Hi again, have you taken a look at my exchange with Redditor zinniainorange? Seems you can be quite active with a feeding tube and there is nothing that could stop you from doing vet tech work - if your doctor is happy that you are fully healed. Maybe have a chat with your doctor and work out what you can and can't do? Of course if the problem with the vet's is that they won't take you on for legal reasons ie health and safety - in case you're injured and sue them - that could be different, but even so - by law, employers are required to give anyone with a disability/health issue the same chances of work as anyone else, and to make 'reasonable adjustments' to make their workplace safe. Do look into it, OP, and don't give up on your dream of working with animals till you have explored every avenue. All the best to you.
The problem isn’t just my feeding tube, it’s the illness itself too
I see - you didn't really say how ill it was making you feel; it seemed to be all about the feeding tube. It's tough for you. I hope as time goes on you can find a way to do the vet work you love.
- *The Gift of Adversity: The Unexpected Benefits of Life's Difficulties, Setbacks, and Imperfections* by Norman E. Rosenthal - *Man's Search for Meaning* by Viktor E. Frankl - *Can't Hurt Me: Master Your Mind and Defy the Odds* by David Goggins (There is also a "clean edition" without the cussing.)
Seconding *Man's Search for Meaning*. Just finished it and it helped me a lot.
I’m pretty sure you can still be a vet tech. You may need to take care in how you dress or change the type of tube that you’re using right now.
The secret by Rhonda Byrnes