Chronic Illness | Microscopic Colitis | You’re not alone
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- Опубликовано: 4 фев 2019
- What it’s like on any given day for me living with the auto immune disease collagenous colitis (microscopic colitis). Thank you for watching and don’t forget to reach out chronic illness fam! We are in this together ❤️
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I was just diagnosed with lymphocytic colitis which is another type of microscopic colitis and I stumbled across your video. I had been looking for answers to my chronic bathroom issues and stomach pain. I'd been looking since 2014, and was finally diagnosed in 2019. I had to endure so many tests and procedures including 2 colonoscopy/endos. The worst part is they discovered it the during the first scopes biopsies, but it was only labeled as "probable," so I was never told about it! I gave up for a while and finally found a new gastro that redid the tests and I'm finally getting answers. It's difficult when you don't "look" sick to anyone, especially I was gaining weight at the time so no one believed me about feeling so sick. Anyway, I definitely needed to hear this affirmation today. Thanks for speaking out about this!
Hi 👋🏼 sorry for my delayed reply. I just wanted to thank you for sharing part of your journey with me. It’s so frustrating to hear how long it took you to be properly diagnosed & find the answers you deserve, I can’t imagine how difficult it’s been for you. I’m relieved you finally have a diagnosis!!! It’s such a strange feeling to finally have an answer, it can be a lot to process. So happy you found some comfort from watching my videos & knowing you are definitely NOT ALONE. I’d love to keep in touch if you’re up for it !
Take care !!
Xoxoxox
Praline you have helped me more then you will ever know ! Thank you so much ! I was first diagnosed in December 2019, and then COVID hit in the middle of going through a series of test. I just now have gotten answers and put on meds and am a little better. Your videos got me through a lot . Thanks again Michael .
I have lymphocitic colitis but I am 65...I struggle with this auto-immune desease since 3 years. Budesonide doesn't cure. When I stop, I do relapse. I don't know if a diet helps. I have try everything. I am French ! And we have no answer except the same treatement for Crohn....
Thanks for your ls videos. Yes, you are a warrior! Agnès
I was diognosed 18 months ago ago and I was very sick with it Iv learned to live with it. I thought I had cancer so to be diognesed with this was a blessing. I was depressed and very down and thought my life was over, steroids worked and I take them when I need them also tablets that stop the diorea . I’m 67 work part time I live in the uk . Try and be positive and have a positive mindset and you will be ok . May not seem that way but I promise you will be ox
I so appreciate your forthright manner with this illness. My family struggles with my flare's. I often feel isolated as well as embarrassed with my bodily functions. I have only been diagnosed for a year and a half after almost dying from a bowel infection. Thank you for giving me a better outlook on this rough disease
Hi Julie Anne Soltero 👋🏼 first of all thank you so much for sharing some of your journey with this illness. I’m amazed by your strength of surviving such a terrible bowel infection and this disease , you are the definition of a warrior 💪🏼 I 100% understand how isolating and embarrassing this can be but now you KNOW you are never alone you can always reach out to me because I get what you’re going through. It’s tough for our loved ones to see us struggle but as time passes and we all adjust it will get easier for all involved (I hope). I’m just trying to give this illness a voice and let everyone struggling with it know not to be ashamed ! We have this disease it doesn’t have us ! Sending much love your way ! 💕✌🏼
@@StomachSister you are very inspiring to listen to. I feel like you get how exhausted this gets and work can be impossible at times. Thank you for your wonderful videos!!
Thank you so much for sharing. I was diagnosed with microscopic colitis 7 months ago. I am struggling, and so identify with the tiredness. Just constantly tired. I am still waiting to see a specialist, 7 months now. I started taking bentonite clay, psyllium husks and acv with the mother about 3 months ago as the steroids my GP gave me did nothing. The clay mix has really helped, although I feel tired all the time still, my flares have reduced in intensity, and the gap lengthened between them. I was flaring 4 weeks on 1 week off. Now I am flaring 1-2 weeks on and 3-4 weeks off. Flaring right now so as you know, super exhausted. I may well make a video myself! Although I've lost so much weight I'm a little bit of a shadow of my former self! Glad to connect with you, look forward to hearing from you and sharing with you in the future. All the best and lots of love. Ed.
Hi 👋🏼 I apologize for my delayed reply ! I just want to thank you for watching and for sharing some of your story with me it really means a lot. How are you feeling these days? How’s your fatigue lately ?
Have you been able to finally see a specialist? I’m interested in this clay mix that you were talking about if you want to give me more information on that I’d love to give it a try. Have you stopped taking the steroids completely? Sorry for all of my questions ha ha Ha
I think if you feel comfortable enough you should definitely do a video sharing your experience because it’s always good to know that there are others out there that go through what we go through on a daily basis and I completely get what you mean when you feel like a shadow of your former self !! But I must say that doing these videos and speaking out and advocating and talking to all of you guys has really help me build some confidence ❤️
Hope to hear from you soon !
Thank you very much for sharing. My sister has been suffering with this illness for years and only recently diagnosed with it. Your videos are helping me get some insight to what she's going through. Subscribed.
Thanks for taking the time to watch and really trying to understand what your sister is going through, it can be hard to try to explain the impacts of this disease to loved ones. I am thankful she has a diagnosis after such a long time of suffering! It does get easier little by little, i hope she stays strong !! thanks for the support!
Im very sorry that you have this illness, I hope you will get better. Just take as good of care of yourself as you can, and never give up. I wish you the VERY best.😊
Hey girl! Thank you for the book recommendation! I was diagnosed with MC in nov and am definitely trying to wrap my arms around this new life. I decided to go off endocort that was working but leaving me with horrible headaches. I am going it all natural. I have Eliminated gluten and dairy. Having a flare up but your videos help me... wishing you health in 2021 -thanks for all you do❤️
Hey Praline! Your videos have been an immense help to me post-diagnosis and I can’t thank you enough. How are you doing now and will you be doing any more videos in the future? I hope so! Thanks once again. See you soon we all hope! 👍🏻
Thanku hunny had this for 9 years nice to no am not alone💕💕💕
Thank YOU for staying strong for the past 9 years. You are never alone 💕
Thank you for taking the time to reach out
Means a lot to me 💖
You are making a difference thank you :)
Thank you VERY much for your sweet comment, it made my heart feel so full !!
xoxox
@@StomachSister I'm 37 and have to have a colonoscopy and endoscopy done June 11th. I have been having similar issues as you. I'm nervous having it done. Have you done a video on your experience with the colonoscopy and endoscopy? I have been watching your videos and I absolutely love them. 😊
@@crissybella3457 I am sorry to hear that you have been suffering from some of these same symptoms I know how awful they can be , especially being un-diagnosed.
What are some of your symptoms and for how long have you been experiencing them if you don't mind me asking ?
I have not done a video yet about my experience with the colonoscopy and endoscopy but I definitely can ! Stay tuned.
I am so happy to hear you’ve been enjoying all of my videos, the support truly means so much to me and it keeps me motivated!
@@StomachSister I have had chronic diarrhea for a year. Its every day, most of the time multiple times a day. If I'm not around a bathroom I won't be able to hold it :(, Feeling nauseous, tired, joints hurting, pain in diff places in my stomach, and just unwell most of the time. I did a stool test though and it came back positive for blood. I can't wait to find out what's wrong. I HATE feeling like this. I hope you do a video on the procedure you had done even if it wasn't a good experience. I know it can go either way. I'm ok with that lol. Thank you for getting back to me 💜
@@crissybella3457 I am SO sorry you've had to go through all of this for a year, or any amount of time for that matter. It was 9 months before I was diagnosed and it was the worst 9 months of my life. Thank you for sharing your symptoms with me. I am cautiously optimistic that the colonoscopy and endoscopy will give you the diagnosis you’ve been waiting for. Although it’s not the easiest thing to go through I just tacked it like one of the last hurdles in my journey for answers. I will definitely do a video either today or tomorrow :) I understand why you hate feeling this way, I can relate. Please hang in there, your answers are on the way and I promise you will make it through this ! I am always here if you need to talk or some support !! You can reach out to me on here or via email Pralinenoel@gmail.com !
2019: Don't isolate yourself!
2020: laughs in COVID
Praline,
Thank you for the video. I was diagnosed a few months ago with the Lymphocytic flavor of colitis. I am on my second doctor trying to get this under control. Autoimmune disease is not completely new to me because I was also diagnosed with Hashimoto's a little over a year ago.
Jon Kicker thanks for watching, I know when I first got diagnosed I had no idea what to do and to be honest it’s been quite the learning process since then. My GI isn’t much help so all I’ve learned so far is from talking with others who have this illness, there are so many of us out there !
How are you feeling dealing with Hashimoto’s & L C ?
Again thanks for reaching out ! Please keep in touch and know you aren’t alone in this
@@StomachSister I have switch from MD Doctors to DOs with the exception of my Neurologist. I have found that they listen much better.
Jon Kicker that’s great you have Drs who listen ! That was definitely one of the most frustrating parts of this health journey for me , when I was so sick and trying to figure out what was wrong and every Doctor would dismiss me and tell me it was all in my head😒
My GI listens but doesn’t seem to know much about this illness or how to treat it
Thank you for giving me strength! I am allergic to soy, diary and iodine plus I can't take any iron. I'm having trouble finding a vitamin/ probiotic brand that I can use; do you have any suggestion? I teach elementary school which means I'm moving all day and have no one to relieve me during class time which causes mental stress every minute worrying how to cope. Thank you for sharing your story because I've had this for most of my adult life and am just now getting help.
So sorry its taken some time to get back to you ! I did a video about 6 months ago listing all the supplements/ vitamins and probiotics i take daily, unsure if you've seen it yet but i hope it helps you find something your body is able to tolerate. The mental stress and stress in general always seem to make my symptoms much worse, difficult to find a balance with all of this... i know you can relate. Thank you for reaching out to me and im here if you ever need some support or have any questions. Stay strong
I have Graves Disease (autoimmune and thyroid disease) and in the last 6 weeks developed NON STOP diarrhea. I’m going on for a colonoscopy tomorrow and my GI is testing for a lot of stuff but she thinks it’s MC. I am so fucking sick. I’m exhausted, diarrhea all the time, bones and joints ache 24/7 and I feel very malnourished. I am feeling very hopeless at this point. Hope I find answers soon. Good luck to you!
Thank you for watching , reaching out and sharing with me. How did the procedure go ? how long do you have to wait to get the results? I am so sorry you have to deal with this all at once , i feel you... just feeling depleted in every way possible. It is understandable why it feels so hopeless right now. I don't know if this helps at all but you are not alone. Sending you all the good vibes and hope that you find answers and relief soon. Please keep me updated !
How are you doing now?
Hi! I’ve commented on one of your other videos. I would love to chat with you about collagenous colitis! I feel clueless, my gastro didn’t give me much information but to take an12 week steroid and hope to feel relief. :(
Rylee nightingale hey 👋🏼 thank you for reaching out ! I know how you feel, I felt completely clueless too after I was diagnosed. We can totally chat anytime ! You can email me at pralinenoel@gmail.com
Stay strong ❤️ talk soon
This is exactly what my dr suspects I have. Had a colonoscopy today and he took several biopsies so don't know yet but I'm already having the symptoms again 😭
Hi Michelle 👋🏼 first of all *HIGH FIVE* for getting though the colonoscopy !! The prep was literally hell on earth ! Lol
Hope you are resting and staying hydrated. Please keep me posted with your results and if you do have MC or even if you don’t I’m here if you need me !
Xoxo
P.s if your symptoms are terrible I would advise to stay overly hydrated , eliminate gluten and take shots of Pepto 💕❤️💕
Def been staying hydrated and will try the pepto. I'm actually on the keto diet so don't eat gluten anyway. I'm afraid I may have a lactose intolerance. Waiting for the dr to call to set up some breath tests to check for SIBO?? Hell, idek, just so tired of it lol
My gastroenterologist said he feels like its microscopic colitis bc of my symptoms of course but also bc I already have an auto immune disease (multiple sclerosis) and its very common to develop another one or two along with it
Hi Michelle 👋🏼 any news on your diagnosis ? How are you feeling lately ?
I'm actually sitting at the gastroenterologist office now. They had me do a series of 3 breath tests. Today is my last one. Guess I'm going to get all my results at the same time? Idk. All I know is the biopsies showed colitis but idk what kind. They want to get all my tests done before the dr discusses it with me. This is a pain in the rear!
Hey Praline! Your videos have been an immense help to me post-diagnosis and I can’t thank you enough. How are you doing now and will you be doing any more videos in the future? I hope so! Thanks once again. See you soon we all hope! 👍🏻