Hello, I just came across your videos. Having stage 4 colon cancer it drives me CRAZY! When people give me advice. I have issues with throwing up. My family calls it being urppie, for me I always have high quality gallon ziplock baggies. I’m going on almost 8 years also with an ostomy and doing pretty good. Totally I’ve had my ups and downs. Things you say are a lot of the things I do. I take a 1/3 MiraLAX cap full, in WARM WATER…sometimes I add a squeeze of lemon, the kind you mix with water and you almost can’t taste it about every three days:) a little more if I eat something I’m going to regret. Bless you, Kristine❤
I believe you have every right to get on here and share every bit of your digestive system journey, good, bad, and not sure what to think!!! I've had a lot of digestive problems in my life and I'm a D person not C. There is nothing easy about all this. ♥🧡💛♥🧡💛
Thank you so much for your encouragement ♥. I'm glad you are interested in all parts of this journey. You are so right that nothing is easy about this. Digestive problems of any type are so difficult. I am sorry you have been going through your own journey with digestive problems. Sending positive thoughts your way.
Thanks for sharing your journey, I totally empathize as someone with similar struggles! I was diagnosed with hypermobile EDS and told that’s the route cause. However, I don’t believe it’s that simple. I didn’t have a motility disorder until mid-30’s so how could EDS suddenly cause this (I don’t have Pots or any other EDS symptoms, just hyper-mobile joints). I’ve felt so defeated at times, but I’m still determined to do everything I can to get better. Including stem cell treatments, IVIF, or even intestinal transplant if it get to that point! I’ve been fighting this for 5 years and have come to the conclusion that research on motility disorders is very limited, but it is advancing! I believe it’s autoimmune, likely resulting from chronic gi inflammation, leading to leaky gut, leading to antibodies attacking nerve or muscle cells involved in motility. The most helpful advice I have is 1) low dose naltrexone (it boosts your immune system) 2) intermittent fasting (like only consuming calories from 1200-5pm or another 5 hour window that works for you. There’s so much research on IF decreasing inflammation/renewing cellular function. 3) eliminate all processed foods/bars and go natural-organic keto (nothing packaged). Plant based protein is more difficult to digest and causes inflammation. I used to live on protein bars too but trust me I feel so much better now that I eliminated all “fake” processed foods. I have a doctorate degree in nurse anesthesia and work with a lot of GI docs that have given me tons of advice and helped me get through some difficult times! Still spend all my free time researching and believing one day I’ll crack the code and get completely better! 😅
Thank you so much for this comment! It's clear that you have so much knowledge about your conditions, and I appreciate you sharing these parts of what you've learned with me. I love to research as well. It makes me feel like I have more control over what is going on with my body if I can learn everything I can about possible root causes, treatments, related conditions, etc... I wish more doctors would take the holistic view and realize that, as you have said here, it really isn't as simple as one label, one way of understanding things, or even one single root cause, as you mentioned. I admire your determination to keep fighting, to get better, and to explore every possible treatment. It's hard for me to keep that mindset of "I have to keep fighting this," but deep down, I know that my drive to fight this is strong and will return after days where I feel defeated. I've read some articles about autoimmune connections to motility disorders, and it's super interesting. I know very few gastroenterology clinics/doctors/etc... acknowledge the connection and/or offer treatments for any autoimmune root causes. I've never heard of naltrexone. I'll look it up for sure. I certainly believe in the power of real food, and I've been brainstorming ways to get more fresh food into my diet. I think the best path for that with my stomach disorder will be as blended and pureed food. I've been brainstorming smoothie ideas today to get more fruits, vegetables, and seeds into my diet. Cooking can be so discouraging when it feels like I put in tons of effort for the meal just to make me sick, but I'm hoping to eventually cook more home cooked meals with wholesome ingredients, even if I end up having to blend a lot of what I prepare (it may be a while until I have the energy to get back to that though). It's awesome that you have been able to work with so many GI doctors who have been able to support you through your journey. Support is such an important part of getting through this. I really appreciate you watching this video and sharing your advice here. I hope that you do eventually crack the code and get completely better! It seems like you've learned so much and I'm glad you have found daily protocols like intermittent fasting that help you! Sending positive thoughts your way for your health and your research towards cracking the code :)
Yes, purée at first and take digestive enzymes that will help break down your food. I live on soft cooked meat like pot roast and flaky fish provide the protein and omega-3s which are help heal damaged cells. Also “bile acid factors” by Jarrow has been a game-changer for me. It’s natural concentrated bile-acids that help you absorb fats and fat-soluble vitamins while killing sibo-causing bacteria. Taking the bile acids along with pancreatic enzymes break-down your food and help you absorb it so it doesn’t sit in your stomach all day and make you sick. I hope & pray we beat this horrible disorder! So glad you have tons of support on here!
Thank you so so much for this information and advice. I hope and pray we beat this too! I really appreciate your encouragement as well as that of everyone else here. It helps so much :)
I feel so sorry that you are feeling so bad. You have the right to feel however you feel. The more you can let your feelings out, the better I hope you feel. Feeling nauseated SUCKS. I really, truly hope that you start to feel better soon and I hope seeing your specialist in the fall helps. I wish I could give you help, but I’m lucky if I “go” twice a month, so…. But keep us informed on how you’re doing. Vent, scream, cry - go ahead. Your friends and family will get it. And so will we.
Thank you so much, Alison. It really helps to hear someone say that I am allowed to feel how I feel. Feeling nauseated does suck. I'm sorry you have to go through it too. Thank you for your positive wishes as well. I have high hopes for the specialist in the Fall, although it make take months to see him after he opens his waitlist, I know it will be worth it. I will always keep you informed. It truly means so much to me that you care. I hope you are doing alright this week.
I am in the same exact boat as you. I also might have a couple root causes as well. I still am having Chronic Nausea and I have had a lot of dry heaving that does sometimes result in vomiting. I have a lot of excess saliva with the nausea and it is the worst. I am nauseated all of the time and I have loose stools all of the time with dry heaving. 2 years of this stuff. I did do a GI map stool test and I got some results that might explain my symptoms. I started a supplement plan and hopefully my gut will heal with the supplements. Also trying to do a severe food elimination diet if it is also food related. I am really praying for you that you heal soon. I was diagnosed with pancreatic insufficiency(low digestive enzymes), SIBO, gut dysbiosis etc.
We don’t know if any of that is the root cause but we are getting closer to the root cause. The GI map is helpful - not a cheap stool test but it is a great detailed stool analysis!
I really appreciate you sharing your experiences. I am so sorry you have had to go through something so similar for 2 years. It's hard especially when it goes on for so long without relief. Thank you so much for your prayers of healing. I hope you heal soon as well. I am glad you have several interventions to try and that you were able to get that testing. I would be interested to know how things go with your healing journey :) Sending lots of positive thoughts your way!
I relate to everything in this video! Guess what my stomach is either growing use to the amitriptyline or I need a higher dose or adding to my flow motility or sibo is creeping In because my gut is super slow. I went In vacation so I couldn’t go for 6 days. That was awful. On days I work I can’t go either. My gut knows what I am 😂 I’m ready to see my head on a healthy body. If I was your neighbor we could cry together. I hate being sick all my life and like you we go it all! I am going back to my mayo integrative dr to see what I can adjust to help me balance out again. I am doing my Mayo supplement regimen for sibo hoping for improvement.
I always appreciate your updates about your health, but I am sad to know your stomach is getting used to the amitriptyline. I was so hype about how well it was working. The same way I was so hype over every time I thought I found things that helped my intestines "for good". I should know better by now than to expect anything to work forever, but I'm relentlessly hopeful, I guess. You completely understand the frustration of having to constantly adjust to a body that does not want cooperate! I am so ready to be in a healthy body as well. If we were neighbors, I would 100% cry with you. I know you understand how tough it is to never truly feel good. I am glad to hear you have plans to follow up with your Mayo Integrative doctor. I hope they can find the right adjustments to get your symptoms better controlled. I am sending positive thoughts for the SIBO supplement regimen. Hopefully it kicks the SIBO back down again! Hoping for improvements for you, and I'll look forward to any updates.
@@linneanelsonvlogs you are so sweet! Thank you for the kind words. I’m on 10mg of the medication so they may say go up a tad or just treat the sibo. But I know if the integrative dr says to stay on it than I will because he’s natural before anything. I did start losing my pantomprezole for my acid reflux from 40 to 20 and going to try to replace with a acid reflux supplement all natural. My hopes are high. I know it can cause the malabsorption issues I have and can even slow stomach motility so I’m my mind if I can get off of that my digestion issues might improve but my esophagus was in fire for years and caused Barrett’s but I know our bodies are capable of healing so I’m trying so hard to get back to natural over pharmaceuticals because I want them to be temporary not a life long prescription. Really praying you get some relief and guidance very soon. I know you are so tough but it doesn’t me you don’t deserve to feel better! I will say the amitriptyline did take me from starving vomiting constantly in pain and nausea so I pray it’s just sibo and maybe a dose adjustment. I want it to work for me do it will work for you if they feel it will! My mother in law is in it for very similar issues to us and is doing great.
I struggle with a lot of the same things but not the type of nausea that you have. I don’t know how you can deal with any of that, but one thing I wanted to let you know is that MiraLAX makes me nauseous and makes me extremely sick feeling I never would take it again I stick to linzess and linzess only works if you take it on an empty stomach.
MiraLAX makes me feel pretty icky too. It hit me the next day. I felt weak, tired, and just generally ill for a couple days after doing this high-dosage day. This clear-out did help my Linzess to work more effectively, so it was worth it to me. I'm really glad Linzess works for you. Having a motility protocol that works is so important. My hope is that I can use Linzess as my sole motility medication for a while before having to do one of these clear outs again. Although, if the Linzess stops working well again soon, it's probably time to talk to my doctor about going up to the highest dose.
I'm always interested in hearing everyone's approach to this. Feel free to leave a comment or reach out to me on instagram at linnea.e.nelson. I've been documenting my journey with this chronic illness for the last two years now, and you can see what I have tried in all of my prior videos (especially the videos that I have compiled as a documentary on what I've been through). Right now, I'm working with a combination of laxatives (relying most heavily on Linzess) to keep my intestines moving. I've switched over to a blended food diet that helps with gastric accommodation and gastric emptying. Last, I have found that some cardiac and smooth muscle dysautonomia conditions run in my family, so I have been taking extra electrolytes in the form of salt packets and taking fludrocortisone to help maintain my sodium levels and blood pressure. Even though my symptoms (when unmanaged) are worse than they were a year ago, I have found effective ways to manage the symptoms even in the last few weeks. Anyways, let me know what your method is. Thanks!
Hello, I just came across your videos. Having stage 4 colon cancer it drives me CRAZY! When people give me advice. I have issues with throwing up. My family calls it being urppie, for me I always have high quality gallon ziplock baggies. I’m going on almost 8 years also with an ostomy and doing pretty good. Totally I’ve had my ups and downs. Things you say are a lot of the things I do. I take a 1/3 MiraLAX cap full, in WARM WATER…sometimes I add a squeeze of lemon, the kind you mix with water and you almost can’t taste it about every three days:) a little more if I eat something I’m going to regret. Bless you, Kristine❤
I believe you have every right to get on here and share every bit of your digestive system journey, good, bad, and not sure what to think!!! I've had a lot of digestive problems in my life and I'm a D person not C. There is nothing easy about all this. ♥🧡💛♥🧡💛
Thank you so much for your encouragement ♥. I'm glad you are interested in all parts of this journey. You are so right that nothing is easy about this. Digestive problems of any type are so difficult. I am sorry you have been going through your own journey with digestive problems. Sending positive thoughts your way.
Thanks for sharing your journey, I totally empathize as someone with similar struggles!
I was diagnosed with hypermobile EDS and told that’s the route cause. However, I don’t believe it’s that simple. I didn’t have a motility disorder until mid-30’s so how could EDS suddenly cause this (I don’t have Pots or any other EDS symptoms, just hyper-mobile joints).
I’ve felt so defeated at times, but I’m still determined to do everything I can to get better. Including stem cell treatments, IVIF, or even intestinal transplant if it get to that point!
I’ve been fighting this for 5 years and have come to the conclusion that research on motility disorders is very limited, but it is advancing! I believe it’s autoimmune, likely resulting from chronic gi inflammation, leading to leaky gut, leading to antibodies attacking nerve or muscle cells involved in motility.
The most helpful advice I have is 1) low dose naltrexone (it boosts your immune system)
2) intermittent fasting (like only consuming calories from 1200-5pm or another 5 hour window that works for you. There’s so much research on IF decreasing inflammation/renewing cellular function.
3) eliminate all processed foods/bars and go natural-organic keto (nothing packaged). Plant based protein is more difficult to digest and causes inflammation. I used to live on protein bars too but trust me I feel so much better now that I eliminated all “fake” processed foods.
I have a doctorate degree in nurse anesthesia and work with a lot of GI docs that have given me tons of advice and helped me get through some difficult times!
Still spend all my free time researching and believing one day I’ll crack the code and get completely better! 😅
Thank you so much for this comment! It's clear that you have so much knowledge about your conditions, and I appreciate you sharing these parts of what you've learned with me. I love to research as well. It makes me feel like I have more control over what is going on with my body if I can learn everything I can about possible root causes, treatments, related conditions, etc... I wish more doctors would take the holistic view and realize that, as you have said here, it really isn't as simple as one label, one way of understanding things, or even one single root cause, as you mentioned. I admire your determination to keep fighting, to get better, and to explore every possible treatment. It's hard for me to keep that mindset of "I have to keep fighting this," but deep down, I know that my drive to fight this is strong and will return after days where I feel defeated.
I've read some articles about autoimmune connections to motility disorders, and it's super interesting. I know very few gastroenterology clinics/doctors/etc... acknowledge the connection and/or offer treatments for any autoimmune root causes. I've never heard of naltrexone. I'll look it up for sure.
I certainly believe in the power of real food, and I've been brainstorming ways to get more fresh food into my diet. I think the best path for that with my stomach disorder will be as blended and pureed food. I've been brainstorming smoothie ideas today to get more fruits, vegetables, and seeds into my diet. Cooking can be so discouraging when it feels like I put in tons of effort for the meal just to make me sick, but I'm hoping to eventually cook more home cooked meals with wholesome ingredients, even if I end up having to blend a lot of what I prepare (it may be a while until I have the energy to get back to that though). It's awesome that you have been able to work with so many GI doctors who have been able to support you through your journey.
Support is such an important part of getting through this. I really appreciate you watching this video and sharing your advice here. I hope that you do eventually crack the code and get completely better! It seems like you've learned so much and I'm glad you have found daily protocols like intermittent fasting that help you! Sending positive thoughts your way for your health and your research towards cracking the code :)
Yes, purée at first and take digestive enzymes that will help break down your food. I live on soft cooked meat like pot roast and flaky fish provide the protein and omega-3s which are help heal damaged cells. Also “bile acid factors” by Jarrow has been a game-changer for me. It’s natural concentrated bile-acids that help you absorb fats and fat-soluble vitamins while killing sibo-causing bacteria. Taking the bile acids along with pancreatic enzymes break-down your food and help you absorb it so it doesn’t sit in your stomach all day and make you sick.
I hope & pray we beat this horrible disorder! So glad you have tons of support on here!
Thank you so so much for this information and advice. I hope and pray we beat this too! I really appreciate your encouragement as well as that of everyone else here. It helps so much :)
I feel so sorry that you are feeling so bad. You have the right to feel however you feel. The more you can let your feelings out, the better I hope you feel. Feeling nauseated SUCKS. I really, truly hope that you start to feel better soon and I hope seeing your specialist in the fall helps. I wish I could give you help, but I’m lucky if I “go” twice a month, so…. But keep us informed on how you’re doing. Vent, scream, cry - go ahead. Your friends and family will get it. And so will we.
Thank you so much, Alison. It really helps to hear someone say that I am allowed to feel how I feel. Feeling nauseated does suck. I'm sorry you have to go through it too. Thank you for your positive wishes as well. I have high hopes for the specialist in the Fall, although it make take months to see him after he opens his waitlist, I know it will be worth it. I will always keep you informed. It truly means so much to me that you care. I hope you are doing alright this week.
I am in the same exact boat as you. I also might have a couple root causes as well. I still am having Chronic Nausea and I have had a lot of dry heaving that does sometimes result in vomiting. I have a lot of excess saliva with the nausea and it is the worst. I am nauseated all of the time and I have loose stools all of the time with dry heaving. 2 years of this stuff. I did do a GI map stool test and I got some results that might explain my symptoms. I started a supplement plan and hopefully my gut will heal with the supplements. Also trying to do a severe food elimination diet if it is also food related. I am really praying for you that you heal soon. I was diagnosed with pancreatic insufficiency(low digestive enzymes), SIBO, gut dysbiosis etc.
We don’t know if any of that is the root cause but we are getting closer to the root cause. The GI map is helpful - not a cheap stool test but it is a great detailed stool analysis!
I'm glad to hear you are getting closer to finding the root cause and hopefully getting relief!
I really appreciate you sharing your experiences. I am so sorry you have had to go through something so similar for 2 years. It's hard especially when it goes on for so long without relief. Thank you so much for your prayers of healing. I hope you heal soon as well. I am glad you have several interventions to try and that you were able to get that testing. I would be interested to know how things go with your healing journey :) Sending lots of positive thoughts your way!
I relate to everything in this video! Guess what my stomach is either growing use to the amitriptyline or I need a higher dose or adding to my flow motility or sibo is creeping In because my gut is super slow. I went In vacation so I couldn’t go for 6 days. That was awful. On days I work I can’t go either. My gut knows what I am 😂 I’m ready to see my head on a healthy body. If I was your neighbor we could cry together. I hate being sick all my life and like you we go it all! I am going back to my mayo integrative dr to see what I can adjust to help me balance out again. I am doing my Mayo supplement regimen for sibo hoping for improvement.
I always appreciate your updates about your health, but I am sad to know your stomach is getting used to the amitriptyline. I was so hype about how well it was working. The same way I was so hype over every time I thought I found things that helped my intestines "for good". I should know better by now than to expect anything to work forever, but I'm relentlessly hopeful, I guess. You completely understand the frustration of having to constantly adjust to a body that does not want cooperate! I am so ready to be in a healthy body as well. If we were neighbors, I would 100% cry with you. I know you understand how tough it is to never truly feel good. I am glad to hear you have plans to follow up with your Mayo Integrative doctor. I hope they can find the right adjustments to get your symptoms better controlled. I am sending positive thoughts for the SIBO supplement regimen. Hopefully it kicks the SIBO back down again! Hoping for improvements for you, and I'll look forward to any updates.
@@linneanelsonvlogs you are so sweet! Thank you for the kind words. I’m on 10mg of the medication so they may say go up a tad or just treat the sibo. But I know if the integrative dr says to stay on it than I will because he’s natural before anything. I did start losing my pantomprezole for my acid reflux from 40 to 20 and going to try to replace with a acid reflux supplement all natural. My hopes are high. I know it can cause the malabsorption issues I have and can even slow stomach motility so I’m my mind if I can get off of that my digestion issues might improve but my esophagus was in fire for years and caused Barrett’s but I know our bodies are capable of healing so I’m trying so hard to get back to natural over pharmaceuticals because I want them to be temporary not a life long prescription. Really praying you get some relief and guidance very soon. I know you are so tough but it doesn’t me you don’t deserve to feel better! I will say the amitriptyline did take me from starving vomiting constantly in pain and nausea so I pray it’s just sibo and maybe a dose adjustment. I want it to work for me do it will work for you if they feel it will! My mother in law is in it for very similar issues to us and is doing great.
I'm praying for relief for you as well :)
I can't quite remember, but did your Gastronologist ever give you a stiz mark tracker test to see how slow the motility of your intestines are??
I struggle with a lot of the same things but not the type of nausea that you have. I don’t know how you can deal with any of that, but one thing I wanted to let you know is that MiraLAX makes me nauseous and makes me extremely sick feeling I never would take it again I stick to linzess and linzess only works if you take it on an empty stomach.
MiraLAX makes me feel pretty icky too. It hit me the next day. I felt weak, tired, and just generally ill for a couple days after doing this high-dosage day. This clear-out did help my Linzess to work more effectively, so it was worth it to me. I'm really glad Linzess works for you. Having a motility protocol that works is so important. My hope is that I can use Linzess as my sole motility medication for a while before having to do one of these clear outs again. Although, if the Linzess stops working well again soon, it's probably time to talk to my doctor about going up to the highest dose.
Hey I have been dealing with very similar issues and have been trying something new with lots of success. Can you chat with me . I’d love to share
I'm always interested in hearing everyone's approach to this. Feel free to leave a comment or reach out to me on instagram at linnea.e.nelson. I've been documenting my journey with this chronic illness for the last two years now, and you can see what I have tried in all of my prior videos (especially the videos that I have compiled as a documentary on what I've been through). Right now, I'm working with a combination of laxatives (relying most heavily on Linzess) to keep my intestines moving. I've switched over to a blended food diet that helps with gastric accommodation and gastric emptying. Last, I have found that some cardiac and smooth muscle dysautonomia conditions run in my family, so I have been taking extra electrolytes in the form of salt packets and taking fludrocortisone to help maintain my sodium levels and blood pressure. Even though my symptoms (when unmanaged) are worse than they were a year ago, I have found effective ways to manage the symptoms even in the last few weeks. Anyways, let me know what your method is. Thanks!