Get $30 off your first order & a free gift worth up to $60 by heading to ThriveMarket.com/LetsTalkIBD Thank you so much to Thrive Market for sponsoring this video! I ❤ Thrive Market!
Hi Maggie. Totally agree with everything you have said. My 18 year old daughter was diagnosed when she was 12 years old. Her symptoms came on so slow the GP dismissed us every time I took my daughter to see him with new symptoms. Thankfully our dentist took her mouth ulcers seriously and reffered her to a gastro team who eventually diagnosed her. I truly believe my daughters symptoms started at the age of 5 and took unto she was 12 for it to come out full blown. Thanks to the ongoing updating of new treatments my daughter has been in remission for 6 years.
I am 50 years of age and was diagnosed 30 years ago at age 20. My two main symptoms were excruciating abdominal pain and vomitting after I ate, every time. No bowel issues. I have had years of steroids, Imuran, Salofalk, Cipro, Flagyl, pain meds, Imodium, Pepto, Pantoloc, and multiple surgeries. Remicade was finally the only thing that worked for me. An infusion once a month. I have never had an ostomy. I have had many bowel resections, one bowel obstruction, two peri anal abcesses resulting in a fistula surgery, twice. I was told 30 years ago to contact the Crohns & Colitis Foundation and given a phamplet along with a VHS tape to watch at home. I was on a chicken broth and jello diet for over 90 days. My first bout with this landed me in the ER and having emergency surgery at 1am for an appendectomy. It turned out not to be the appendix, rather they saw that my small and large bowel were completely inflamed and raw. So adding an operation that was unnecessary when already being in excruciating pain just pain things absolutely brutal. I am happy to say that after 30 years of a very tough very relenting disease I am still here and doing ok. I amin a very bad flare right now and am so happy to have come across the YT Channel. It is an amazing channel, you are amazing with how you share ever with his. Very brave.
I have Crohn’s for many many years now that I’ve met my senior years. I’ve had a major flareup the pain is unbelievable I can’t hold anything. I feel like my torso is going to catch on fire from the inside out. That’s how bad it is I’m taking sky Rizzi infusions, I haven’t seen any difference. This is one of the worst flareups I’ve ever had it and it’s not getting better. I recently had a colonoscopy and I had all sated Aries. It looked terrible inside me now they have turned cancer I think you for telling your story you’re right, you turn against food completely when you’re running to the toilet every few minutes and the pain so bad that she almost passed out. Thank you again for your story and info.
@@GuiLOST-lz8su I took Remicade every 6 weeks. I switched to Humira and took two injections per week. Some people need a higher dose to reach therapeutic levels. Patient assistance programs are a big help with these situations.
I’ve had horrific symptoms since April 2023 and almost a year later I finally have a diagnosis of terminal ileitis with further tests planned to check my small bowel. You’ve been my guiding light since around may last year when I first found you and I had no idea what was going on but had a feeling it was crohns. I think back to 10 year old me that was constantly in and out of hospital checking for appendicitis which turned out to be ‘trapped wind’ So thank you for being someone I could turn to while I was looking for answers and teaching me to advocate for myself ❤
Crohn's patient here, food is such a loaded topic. I cant even count the number of times I have cried in the grocery store, tryuing to find something I could eat. my biggest tip is to find a nutritionist who specialises in GI or autoimmunes. Your GI might be able to refer you, but you can also make calls to the nutritionists in your area. its a LOT of phone calls, but totally worth it. My nutritionist was a life saver! She specialised in autoimmune diseases, and was able to work with me and my trigger foods and my symptoms and my new FODMAP diet. She had lists from local grocery stores of safe foods-foods that for sure did not include my triggers. She also incorporated my lifestyle and job in menu planning, ad those lists of safe foods from stores i actually shopped at were a game changer. Suddenly the FODMAP diet and trigger food restrictions didnt seem so crazy and unmanagable. I wish somehting like Thrive was around way back when igot diagnosed, it looks like a game changer for newly diagnosed people. You got this, peeps, you can do this 🧡🧡🧡🧡
Don’t have Crohn’s; my colostomy came via colon cancer. That’s how my wife and I came onto your channel, 8 months ago. Love your videos; find them helpful. I can relate to all the testing while I was in the hospital.
As I listened more to the video, your younger self is typical of most teens who don’t want to be seen as different. As a teacher for 40 years in HS, I saw this very frequently. Ah, you were very normal Maggie, like others people your age at that time.
Maggie, I wanted to cry for the little girl you were. I'm so happy you have grown up and are trying to help others who are suffering. Your heart must be made of gold.
My son Thomas has had surgery taking out 40 cm/13in of his colon and intestines, 40 days ago. We are learning what he can eat. Not easy. Thank the Lord for the surgery.
Thank you, I really, really needed to hear that right now😢❤ I'm a 21 year old female, I've been suffering with daily symptoms,(which include: headaches, migraines, stomach pains and nausea, chest pains, dizzy spells with momentary vision loss, joint pains, random vomiting, diarrhoea, constipation and lastly, numbness, pins-and-needles and/or discolouration of the limbs temporarily), for over 6 years now and still have no diagnosis. I'm often brushed off or straight up ignored by doctors and people around me in my life, and all the tests come back "normal". So from the bottom of my heart, thank you, for everything you do and for just being you ❤
Thank you for sharing this, Maggie. I just turned 16 last November and have been dealing with stomach issues the majority of my life, but it's always been written off as my anxiety. My symptoms have recently become disabling, and ive been feeling very anxious while awaiting doctors appointments/potential answers. Your channel has taught me so much, and has helped me to accept that even if what im dealing with isnt crohns, i shouldnt be embarrassed or scared to speak up about it. Thank you for being someone to look up to.
Thank you for making this video! I feel like we are living very similar lives. (My mom says we even look alike) I was diagnosed with crohns at age 13, got a temp ostomy in 2015, reversal 3 months later, and a permanent one in 2019 about the same time you got yours and have been watching you ever since. Navigating a diet with crohns is so hard. What may be tolerable one day can be entirely different the next.
Hi.. so glad I've found u. I also have crohns disease since I was 12yrs old. Crazy back then nobody didn't know what it was really. Now its more common. God bless u love. ❤
This video came out at the perfect time! I've been subscribed to your channel for almost 4 years now, but just got my Crohn's diagnosis in the beginning of December. There are so many tests and the fatigue just makes everything more difficult. I don't know how you handled it all so young!
I have had Crohns for almost 14 years since diagnosis. I have been suffering very bad fatigue. I have been trying to get my primary care doctor and my GI doctor to start testing my vitamin D and Vitamin B12. Finally I got my PCP to test my levels. Today the results came in. Although I've been supplementing both for years, both were extremely low. My vitamin D is going from 2000 IU daily to 50,000 IU weekly, a prescription strength. I've been supplementing B12 at 625% of daily value. Now my doc is prescribing B12 injections. I hope this helps my fatigue.
I'll have my follow-up appointment next month and I'm planning to ask about fatigue and vitamin levels. It's tough to know now that fatigue will always be some part of my life, but hopefully I can get on top of it quickly. I hope you start feeling better soon with the increased dosages! @@douglusty2756
Hi Maggie. I was diagnosed at age 13. Looking back I could have been diagnosed a few years earlier. My dad had Crohn's and was diagnosed at 16. We live in a small town in Northern Indiana. They didn't know what to do for him so he had a double barrel ostomy. Later he was the first person in our area to be placed on home total parenteral nutrition. Anyway, I never told anyone of my symptoms because I didn't want to go through what my dad had gone through. Back in 1980 you had to clean your plate before getting up from the table so I wore clothes with pockets and hid my food because eating anything caused severe abdominal pain. Then I'd flush it. The only reason I was taken to the gastroenterologist was my parents heard me moaning at night. I was diagnosed quickly because of my dad. I had a resection and was on a lot of different meds but did well until I got pregnant. With each pregnancy it got worse and I was using the bathroom 40 to 50 times a day I had a cholectomy in 2005 which my ostomy was reversed. Now 2024 I have a rectal tumor that they have been trying to remove but can't along with a stricture. I am meeting with a surgeon on the 24th for removal and permanent ostomy. I'm scared. My daughter was also diagnosed at age 18. Luckily Starla has helped her with no surgeries. She is now 33 and doing well. Any thoughts on questions I need to discuss with the surgeon.
I hear you as I know something was wro g for a while but was told I was crazy 🤪 so I suffered a while till I couldn't take it any longer .so I am on the right track now but its harder than people think to get food you can eat as I can't tolerate Dairy or Wheat what so ever....thanks for sharing take care
My name is Ryan. I have crohns disease. I was having issues at 7 years old. They didn't finally diagnose me till I was 11 I had a colostomy for 7 years. Then lost my colon and ended up with an illiostomy. Overall I've had a bag for 30+ years. Currently back on a flair. Have 4 tests coming up and my 12th surgery coming up in the near future.
Hi Maggie! Love your positivity. 💚 Your not alone. I’ve been through same ”journey”. Now I’m waiting for yet another surgery, this time because of ”ärrbråck”. (Swedish). Hernia? surgery. Hope everything turns out well. Take care. 🙋🏼♀️
🌬❣I Love your channel and your Beautiful personality and of course your Furr baby's ❤ my husband has Crohn's. And I have to lot of Stomach issues like Chronic Gastroenteritis. I always watch you ❤I may not always reply because I watch UA-cam a lot on my TV. Stay STRONG 🌬❣ We are all stronger together 🦸♀️💫🦸♂️
Instructiion manual would help me a lot also. I wake in hospital and I do not know where I am and why I am in ,,,,here. 8 months in hospital. I have no ostomy(avanne in finish) but I have enough issues. Are those bandages how expensive? And I have 2 dachshunds called Bambi and Mausie. And bacteriaflora you have in your stomac? Have you somewhere reservoirs to your own flora? And thumbs up to you , your man and docks!
Today my nephrologist's moa was reading the note my urologist sent to another specialist, and apparently he wrote that I have Crohn's. I said, no I have ulcerative colitis! Then the paranoia settled in and I thought: what if he always thought that I have Crohn's? After several phone calls to his office it was clarified that my chart had the correct diagnosis, it is just that one note where he made a mistake. I guess maybe he was just really tired...
Just loving that sweater! I know we have bad issues you with Crohn me with Colitis. Let's try to be happy it is easier for the gut. Oh I am thinking is this all bad stuff from processed foods. antibiotics. cheap processed seed oils. Beats me what it is but it is bad these days.
You are a beautiful caring person. I have had UC since I was 28, with 4 surgeries along the way. I suffered for 30 years until the doctors gave up and took everything out, including the anus. Things will get better bit by bit.
Is it normal to have Crohns with strictures and almost always have pencil thin bowel movements?? Ive had crohns about 12 yrs and have strictures, even tho i havent had a full on flare in a long time i constantly struggle with pencil thin and can never have a normal bm, the only time it gets close to normal is when i eat a lot of fruit. Is it bc of the strictures or possibly eating a trigger food?
Maggie for somone with IBD di you eat something or take something to help from having liquid bowel movements? I have a real issue and my current doctor doesn't seem concern but im losing weight fast. I know I need to lise some but not like this and not so fast. Once the polar weather in Oklahoma gets out of here im looking for a new doctor. I know hes going to make it difficult for me but I will get it done.
I take loperamide - that is over the counter but you should ask your doctor before starting! There is also lomotil and opium tincture - both are prescriptions but help with diarrhea and are used with ostomy patients!
Get $30 off your first order & a free gift worth up to $60 by heading to ThriveMarket.com/LetsTalkIBD
Thank you so much to Thrive Market for sponsoring this video! I ❤ Thrive Market!
Hi Maggie. Totally agree with everything you have said. My 18 year old daughter was diagnosed when she was 12 years old. Her symptoms came on so slow the GP dismissed us every time I took my daughter to see him with new symptoms.
Thankfully our dentist took her mouth ulcers seriously and reffered her to a gastro team who eventually diagnosed her.
I truly believe my daughters symptoms started at the age of 5 and took unto she was 12 for it to come out full blown.
Thanks to the ongoing updating of new treatments my daughter has been in remission for 6 years.
I am 50 years of age and was diagnosed 30 years ago at age 20. My two main symptoms were excruciating abdominal pain and vomitting after I ate, every time. No bowel issues. I have had years of steroids, Imuran, Salofalk, Cipro, Flagyl, pain meds, Imodium, Pepto, Pantoloc, and multiple surgeries. Remicade was finally the only thing that worked for me. An infusion once a month. I have never had an ostomy. I have had many bowel resections, one bowel obstruction, two peri anal abcesses resulting in a fistula surgery, twice. I was told 30 years ago to contact the Crohns & Colitis Foundation and given a phamplet along with a VHS tape to watch at home. I was on a chicken broth and jello diet for over 90 days. My first bout with this landed me in the ER and having emergency surgery at 1am for an appendectomy. It turned out not to be the appendix, rather they saw that my small and large bowel were completely inflamed and raw. So adding an operation that was unnecessary when already being in excruciating pain just pain things absolutely brutal.
I am happy to say that after 30 years of a very tough very relenting disease I am still here and doing ok. I amin a very bad flare right now and am so happy to have come across the YT Channel. It is an amazing channel, you are amazing with how you share ever with his. Very brave.
I have Crohn’s for many many years now that I’ve met my senior years. I’ve had a major flareup the pain is unbelievable I can’t hold anything. I feel like my torso is going to catch on fire from the inside out. That’s how bad it is I’m taking sky Rizzi infusions, I haven’t seen any difference. This is one of the worst flareups I’ve ever had it and it’s not getting better. I recently had a colonoscopy and I had all sated Aries. It looked terrible inside me now they have turned cancer I think you for telling your story you’re right, you turn against food completely when you’re running to the toilet every few minutes and the pain so bad that she almost passed out. Thank you again for your story and info.
You take remicade one month? 90% peolle take once in two months you pay for the treatment?! How much years are you on remicade
@@GuiLOST-lz8su I took Remicade every 6 weeks. I switched to Humira and took two injections per week. Some people need a higher dose to reach therapeutic levels. Patient assistance programs are a big help with these situations.
I’ve had horrific symptoms since April 2023 and almost a year later I finally have a diagnosis of terminal ileitis with further tests planned to check my small bowel. You’ve been my guiding light since around may last year when I first found you and I had no idea what was going on but had a feeling it was crohns.
I think back to 10 year old me that was constantly in and out of hospital checking for appendicitis which turned out to be ‘trapped wind’
So thank you for being someone I could turn to while I was looking for answers and teaching me to advocate for myself ❤
Crohn's patient here, food is such a loaded topic. I cant even count the number of times I have cried in the grocery store, tryuing to find something I could eat. my biggest tip is to find a nutritionist who specialises in GI or autoimmunes. Your GI might be able to refer you, but you can also make calls to the nutritionists in your area. its a LOT of phone calls, but totally worth it. My nutritionist was a life saver! She specialised in autoimmune diseases, and was able to work with me and my trigger foods and my symptoms and my new FODMAP diet. She had lists from local grocery stores of safe foods-foods that for sure did not include my triggers. She also incorporated my lifestyle and job in menu planning, ad those lists of safe foods from stores i actually shopped at were a game changer. Suddenly the FODMAP diet and trigger food restrictions didnt seem so crazy and unmanagable. I wish somehting like Thrive was around way back when igot diagnosed, it looks like a game changer for newly diagnosed people. You got this, peeps, you can do this 🧡🧡🧡🧡
sorry, should ahve included this: if you are in the San Antonio, TX area, its JTA Wellness. Call them, they worked what I felt was a miracle for me.
Don’t have Crohn’s; my colostomy came via colon cancer. That’s how my wife and I came onto your channel, 8 months ago. Love your videos; find them helpful. I can relate to all the testing while I was in the hospital.
As I listened more to the video, your younger self is typical of most teens who don’t want to be seen as different. As a teacher for 40 years in HS, I saw this very frequently. Ah, you were very normal Maggie, like others people your age at that time.
Maggie, I wanted to cry for the little girl you were. I'm so happy you have grown up and are trying to help others who are suffering. Your heart must be made of gold.
My son Thomas has had surgery taking out 40 cm/13in of his colon and intestines, 40 days ago. We are learning what he can eat. Not easy. Thank the Lord for the surgery.
Thank you, I really, really needed to hear that right now😢❤
I'm a 21 year old female, I've been suffering with daily symptoms,(which include: headaches, migraines, stomach pains and nausea, chest pains, dizzy spells with momentary vision loss, joint pains, random vomiting, diarrhoea, constipation and lastly, numbness, pins-and-needles and/or discolouration of the limbs temporarily), for over 6 years now and still have no diagnosis. I'm often brushed off or straight up ignored by doctors and people around me in my life, and all the tests come back "normal".
So from the bottom of my heart, thank you, for everything you do and for just being you ❤
Love your sweater! You always have such nice clothes.
Wish I knew where you shopped. lol. Also, thanks for all the helpful information!
Thank you for sharing this, Maggie. I just turned 16 last November and have been dealing with stomach issues the majority of my life, but it's always been written off as my anxiety. My symptoms have recently become disabling, and ive been feeling very anxious while awaiting doctors appointments/potential answers. Your channel has taught me so much, and has helped me to accept that even if what im dealing with isnt crohns, i shouldnt be embarrassed or scared to speak up about it. Thank you for being someone to look up to.
Thank you for making this video! I feel like we are living very similar lives. (My mom says we even look alike) I was diagnosed with crohns at age 13, got a temp ostomy in 2015, reversal 3 months later, and a permanent one in 2019 about the same time you got yours and have been watching you ever since. Navigating a diet with crohns is so hard. What may be tolerable one day can be entirely different the next.
Which medication are you using?
Hi.. so glad I've found u. I also have crohns disease since I was 12yrs old. Crazy back then nobody didn't know what it was really. Now its more common. God bless u love. ❤
This video came out at the perfect time! I've been subscribed to your channel for almost 4 years now, but just got my Crohn's diagnosis in the beginning of December. There are so many tests and the fatigue just makes everything more difficult. I don't know how you handled it all so young!
I shared my story in the comments. Hang in there, it is rough. Make sure you reach out for support and advocate for yourself. ❤
I have had Crohns for almost 14 years since diagnosis. I have been suffering very bad fatigue. I have been trying to get my primary care doctor and my GI doctor to start testing my vitamin D and Vitamin B12. Finally I got my PCP to test my levels. Today the results came in. Although I've been supplementing both for years, both were extremely low. My vitamin D is going from 2000 IU daily to 50,000 IU weekly, a prescription strength. I've been supplementing B12 at 625% of daily value. Now my doc is prescribing B12 injections. I hope this helps my fatigue.
I'll have my follow-up appointment next month and I'm planning to ask about fatigue and vitamin levels. It's tough to know now that fatigue will always be some part of my life, but hopefully I can get on top of it quickly. I hope you start feeling better soon with the increased dosages! @@douglusty2756
I found your channel today, & Just want to say Happy Valentine's Day to a sweet Angel!!! ❤️
I was told that I had ulcerative colitis the day before they removed my colan, 😢and woke up 5 weeks later. ❤
Hi Maggie. I was diagnosed at age 13. Looking back I could have been diagnosed a few years earlier. My dad had Crohn's and was diagnosed at 16. We live in a small town in Northern Indiana. They didn't know what to do for him so he had a double barrel ostomy. Later he was the first person in our area to be placed on home total parenteral nutrition. Anyway, I never told anyone of my symptoms because I didn't want to go through what my dad had gone through. Back in 1980 you had to clean your plate before getting up from the table so I wore clothes with pockets and hid my food because eating anything caused severe abdominal pain. Then I'd flush it. The only reason I was taken to the gastroenterologist was my parents heard me moaning at night. I was diagnosed quickly because of my dad. I had a resection and was on a lot of different meds but did well until I got pregnant. With each pregnancy it got worse and I was using the bathroom 40 to 50 times a day I had a cholectomy in 2005 which my ostomy was reversed. Now 2024 I have a rectal tumor that they have been trying to remove but can't along with a stricture. I am meeting with a surgeon on the 24th for removal and permanent ostomy. I'm scared. My daughter was also diagnosed at age 18. Luckily Starla has helped her with no surgeries. She is now 33 and doing well. Any thoughts on questions I need to discuss with the surgeon.
Great video, so with you on the food side of things , looking really great your skin looks glowing and healthy 💞💞
I hear you as I know something was wro g for a while but was told I was crazy 🤪 so I suffered a while till I couldn't take it any longer .so I am on the right track now but its harder than people think to get food you can eat as I can't tolerate Dairy or Wheat what so ever....thanks for sharing take care
My name is Ryan. I have crohns disease. I was having issues at 7 years old. They didn't finally diagnose me till I was 11 I had a colostomy for 7 years. Then lost my colon and ended up with an illiostomy. Overall I've had a bag for 30+ years. Currently back on a flair. Have 4 tests coming up and my 12th surgery coming up in the near future.
Love your jumper! You are looking good xxx
Really like your sweater!
Hi Maggie! Love your positivity. 💚
Your not alone. I’ve been through same ”journey”. Now I’m waiting for yet another surgery, this time because of ”ärrbråck”. (Swedish). Hernia? surgery. Hope everything turns out well. Take care. 🙋🏼♀️
🌬❣I Love your channel and your Beautiful personality and of course your Furr baby's ❤ my husband has Crohn's. And I have to lot of Stomach issues like Chronic Gastroenteritis.
I always watch you ❤I may not always reply because I watch UA-cam a lot on my TV. Stay STRONG 🌬❣
We are all stronger together 🦸♀️💫🦸♂️
I have an appointment with my GI next week. I'm not looking forward to it because I'm not fond of him. He tried to take back my diagnosis.
Instructiion manual would help me a lot also. I wake in hospital and I do not know where I am and why I am in ,,,,here. 8 months in hospital. I have no ostomy(avanne in finish) but I have enough issues. Are those bandages how expensive? And I have 2 dachshunds called Bambi and Mausie. And bacteriaflora you have in your stomac? Have you somewhere reservoirs to your own flora? And thumbs up to you , your man and docks!
Today my nephrologist's moa was reading the note my urologist sent to another specialist, and apparently he wrote that I have Crohn's. I said, no I have ulcerative colitis! Then the paranoia settled in and I thought: what if he always thought that I have Crohn's? After several phone calls to his office it was clarified that my chart had the correct diagnosis, it is just that one note where he made a mistake. I guess maybe he was just really tired...
Just loving that sweater! I know we have bad issues you with Crohn me with Colitis. Let's try to be happy it is easier for the gut. Oh I am thinking is this all bad stuff from processed foods. antibiotics. cheap processed seed oils. Beats me what it is but it is bad these days.
You are a beautiful caring person. I have had UC since I was 28, with 4 surgeries along the way. I suffered for 30 years until the doctors gave up and took everything out, including the anus. Things will get better bit by bit.
Is it normal to have Crohns with strictures and almost always have pencil thin bowel movements?? Ive had crohns about 12 yrs and have strictures, even tho i havent had a full on flare in a long time i constantly struggle with pencil thin and can never have a normal bm, the only time it gets close to normal is when i eat a lot of fruit. Is it bc of the strictures or possibly eating a trigger food?
Maggie for somone with IBD di you eat something or take something to help from having liquid bowel movements? I have a real issue and my current doctor doesn't seem concern but im losing weight fast. I know I need to lise some but not like this and not so fast. Once the polar weather in Oklahoma gets out of here im looking for a new doctor. I know hes going to make it difficult for me but I will get it done.
I take loperamide - that is over the counter but you should ask your doctor before starting! There is also lomotil and opium tincture - both are prescriptions but help with diarrhea and are used with ostomy patients!
Hey Maggie!!!!! ❤😊
Having so much bloating and wind any advice
You are too cute! God bless you🙏🏼💕
Everyone is different though. I can't eat black pepper, oranges and lettuce.
☀️🌼
Hi. My. Surgery. Three. Month. Life. Time. Ostmey. To. Much. Gas. Problem.