Love that you are making these videos. Another great way to give and find support! I was diagnosed in 2016 and currently trying to make my way out of a flare.
Thank you very much ! Making these videos has really been therapeutic for me and talking to others that have this illness has been one of my only comforts! i would love to hear about your journey with this illness (only of you want to share). I hope you are able to navigate your way through your current dreaded flare soon, i know how hard they are. Stay strong ! feel free to shoot me and email (pralinenoel@gmail.com) xoxoxox
Yes girl, totally. Be your own advocate too- don't just settle. I went through many doctors and naturopaths. I refused to take meds for it because they made me feel like shit. Doctors didn't want to deal with me because I didn't accept their pills. I knew there was a better way. I really took the time to listen to my body (over many many years) and changed my diet accordingly. I am so thankful I did- I'm not 100% fixed, but I'm way better than I ever was. My diet is pretty restrictive, but it's worth it.
Yes ! we have to be our own advocates. Thanks for sharing some of your journey with me, i love to hear others stories, how they cope and how they handle living with this illness. It gets so exhausting and draining sometimes trying to maintain mentally, physically and emotionally. What are some symptoms that you still have now? and i would love if you would share with me what exactly you eat? i have so many questions haha. xoxoxox
Patience is the hardest thing that I have to deal with, Patience with the healthcare system in fact. My first Diagnosis was in 2013 with Unspecific M.C. , 2015 lymphocytic M.C. From another colonoscopy with biopsies. My first 2 primary doctors had no clue about the illness, Chinese Gastrologist ( only one in town my insurance would let me see) there was a big language barrier issue. I had to move close to family for support, the move came new doctors, and once again trying to find the right primary is not easy. Luckily I’m currently in remission yet that doesn’t mean at all I don’t have symptoms that feel like mini flare ups in which if I don’t flush my system it can last and turn into a full on flare. So yeah patience is BIG !!
100%!!! Patience with the health care system as a whole can be incredibly difficult and at times can be so frustrating you just want to give up ! Sounds like a journey finally getting to the proper diagnosis. It took me 5 doctors to finally get an answer. Happy to hear you’ve got your family near you now, I swear if it wasn’t for my fam and friends I would not be able to handle this illness. We have to have patience or else we would go crazy. CONGRATS on reaching remission !!! Any tips on how to reach remission quicker ? LOL I’m curious about what its like when you finally reach remission. Are you able to eat normally again or do you have to stick to a strict diet? Thank you for reaching out and for the support ! Wishing you nothing but healthy days !
Personally remission To me is a word the doctors use when you’ve previously had positive biopsies and current biopsies do not show inflammation. I still can’t eat anything and have to take meds to control diarrhea cramps bloating . Now saying that I can say slowly I’m having less of it. The main change I made was moving from a very hot location. Summer high temps above 100 for over 3 months to 85 to 90 max for only about a month. But still it’s taken over a year after moving. In the last 3 weeks to maybe 4 weeks I’ll been drinking Creatine, COQ10, EAA and BCAA Aminos. Oh and caffeine a lot of caffeine. I’m drinking Bang energy drink. Personally it seems to help . Ok the bad side to the drink it helps cut the hunger feeling . I only eat a light lunch then light dinner or just a large dinner. After a week drinking the Bang I want to eat more . Lol 😂 and oh man food is good, so what do I do I’ve eaten something that’s really really yum 😋 annnnddddd it’s one of those foods I can’t eat and yes it’s doesn’t feel good as I’m digesting .
On the subject of patience, I’m still trying to be patient with people who love to say “but you don’t LOOK sick.” 🤯 🤬😫 Glad you are learning from this horrible disease. You are miles ahead of most people your age. Good video!
Thank you very much for saying that I’m miles ahead , sometimes I feel like I’m 10 million miles behind ! LOL. The classic “you don’t look sick” I don’t know if I will EVER have the patience for those people ! Haha
Love that you are making these videos. Another great way to give and find support! I was diagnosed in 2016 and currently trying to make my way out of a flare.
Thank you very much ! Making these videos has really been therapeutic for me and talking to others that have this illness has been one of my only comforts! i would love to hear about your journey with this illness (only of you want to share). I hope you are able to navigate your way through your current dreaded flare soon, i know how hard they are. Stay strong ! feel free to shoot me and email (pralinenoel@gmail.com)
xoxoxox
Yes girl, totally. Be your own advocate too- don't just settle. I went through many doctors and naturopaths. I refused to take meds for it because they made me feel like shit. Doctors didn't want to deal with me because I didn't accept their pills. I knew there was a better way. I really took the time to listen to my body (over many many years) and changed my diet accordingly. I am so thankful I did- I'm not 100% fixed, but I'm way better than I ever was. My diet is pretty restrictive, but it's worth it.
Yes ! we have to be our own advocates. Thanks for sharing some of your journey with me, i love to hear others stories, how they cope and how they handle living with this illness. It gets so exhausting and draining sometimes trying to maintain mentally, physically and emotionally.
What are some symptoms that you still have now? and i would love if you would share with me what exactly you eat? i have so many questions haha.
xoxoxox
Patience is the hardest thing that I have to deal with, Patience with the healthcare system in fact.
My first Diagnosis was in 2013 with Unspecific M.C. , 2015 lymphocytic M.C. From another colonoscopy with biopsies.
My first 2 primary doctors had no clue about the illness, Chinese Gastrologist ( only one in town my insurance would let me see) there was a big language barrier issue.
I had to move close to family for support, the move came new doctors, and once again trying to find the right primary is not easy.
Luckily I’m currently in remission yet that doesn’t mean at all I don’t have symptoms that feel like mini flare ups in which if I don’t flush my system it can last and turn into a full on flare.
So yeah patience is BIG !!
100%!!! Patience with the health care system as a whole can be incredibly difficult and at times can be so frustrating you just want to give up ! Sounds like a journey finally getting to the proper diagnosis. It took me 5 doctors to finally get an answer. Happy to hear you’ve got your family near you now, I swear if it wasn’t for my fam and friends I would not be able to handle this illness.
We have to have patience or else we would go crazy.
CONGRATS on reaching remission !!! Any tips on how to reach remission quicker ? LOL
I’m curious about what its like when you finally reach remission. Are you able to eat normally again or do you have to stick to a strict diet?
Thank you for reaching out and for the support !
Wishing you nothing but healthy days !
Personally remission To me is a word the doctors use when you’ve previously had positive biopsies and current biopsies do not show inflammation. I still can’t eat anything and have to take meds to control diarrhea cramps bloating . Now saying that I can say slowly I’m having less of it. The main change I made was moving from a very hot location. Summer high temps above 100 for over 3 months to 85 to 90 max for only about a month. But still it’s taken over a year after moving.
In the last 3 weeks to maybe 4 weeks I’ll been drinking Creatine, COQ10, EAA and BCAA Aminos. Oh and caffeine a lot of caffeine. I’m drinking Bang energy drink. Personally it seems to help .
Ok the bad side to the drink it helps cut the hunger feeling . I only eat a light lunch then light dinner or just a large dinner.
After a week drinking the Bang I want to eat more . Lol 😂 and oh man food is good, so what do I do I’ve eaten something that’s really really yum 😋 annnnddddd it’s one of those foods I can’t eat and yes it’s doesn’t feel good as I’m digesting .
I just discovered your videos today & am so thankful! Please keep making them!
💖💖💖💖💖
On the subject of patience, I’m still trying to be patient with people who love to say “but you don’t LOOK sick.” 🤯 🤬😫 Glad you are learning from this horrible disease. You are miles ahead of most people your age. Good video!
Thank you very much for saying that I’m miles ahead , sometimes I feel like I’m 10 million miles behind ! LOL.
The classic “you don’t look sick” I don’t know if I will EVER have the patience for those people ! Haha
Hi Praline I’m sorry I haven’t been in contact I was Mike who had Microscopic and Ulcerative Colitis I have been busy just trying to make it
Sorry i disappeared for so long !
How are you doing these days Mike ?
Drink the ice cold gluten free beer