Ann's Microscopic Colitis story

Рет қаралды 11,809

3 жыл бұрын

Пікірлер: 46

@sylvialockett1805 3 жыл бұрын

I am so glad I found your story. I have had an horrendous few months experiencing all the same symptoms. Fortunately my doctor sent me for a colonoscopy and a c.t. scan, as I was losing weight rapidly, apart from being drained of energy. Today I received the results of the tests and the diagnosis was collagenous microscopic colitis. I,m sure you will know how relieved I was to know it was not cancer. However, I'd never heard of the condition before and certainly didn,t know anyone who had experienced the same condition. Listening to your story has given me confidence that I can make a decent life for myself again. Thank you so very much and I wish you continued good health .

@teslaandhumanity7383 2 жыл бұрын

@@meddo1679 is that PRoton pump inhibitor?

@samanthaking1530 3 жыл бұрын

I also have this condition. Diagnosed in May 2004. It’s very rare in my country too. (Australia)

@amyhanus5442 5 ай бұрын

Thank you for sharing your story. I just received a diagnosis. I am in my 40s and have to carry clothing everywhere. Feels so limiting. I like to travel and hike but always need restrooms close

@GutsUKCharity 3 ай бұрын

Hi Amy, please know we are here for support. You can call us on 020 7486 0341 Monday - Friday 9am - 5pm. Please note we are not a medical helpline, but this doesn't mean we won't be able to help. Alternatively, you can e-mail us: info@gutscharity.org.uk and we have our microscopic colitis here: gutscharity.org.uk/advice-and-information/conditions/microscopic-colitis/. This week is Microscopic Colitis Awareness Week; a vital week to raise awareness for such an underdiagnosed and often misdiagnosed condition. We are sharing information on our social media channels and also have an awareness page dedicated to this week on our website: gutscharity.org.uk/advice-and-information/conditions/microscopic-colitis/. - Amy

@lilitvahradyan6023 2 жыл бұрын

What a cute woman and so calm of her symptoms

@margaretmorgan3693 2 жыл бұрын

What a brave lady. My Gastroenterologist said that I have but more tests before treatment. I have had major reconstructive surgery 81/2 hours long and thought my problems were a result of the surgery. It looks as though it can take years to diagnose. Thank you Ann for being informative and help many other people. 🙏

@esm2000 Жыл бұрын

honestly know what i know know, it was most likely the antibiotics that you had to take after that triggered it

@vickidriscoll1940 3 жыл бұрын

My story is just about like yours..I’ve was on Budesonide a couple of times but a few weeks after I stop medication the diarrhea returns. I see my doctor in a few days and was wondering our next step is. You doctors idea of taking budesonide as needed makes sense, it gave me more hope. I am definitely going to speak to my doctor about that. Thank you so much for sharing your story. Wishing you good health

@user-js1ww5iq1y 2 жыл бұрын

hello, how do you feel now, how did you know you can take budenofalk? if you have completed the course for three months and then? what about resistance?

@robyn3349 2 жыл бұрын

Thank you, Ann, for sharing your story. Hope you are well!

@modfus Жыл бұрын

Thank you for sharing this. This is all so familiar to me.

@ginacarpentieri1847 3 жыл бұрын

I was just diagnosed with this condition, after years of suffering with IBS symptoms, and getting told after a colonoscopy that everything looked fine. I had never heard of this condition before. It is a relief to finally know what I am dealing with and can work on controlling it through the medication and changing my diet.

@brandyp.9602 2 жыл бұрын

Why didn't they see it in the colonoscopy if that's how it's diagnosed?

@autumnroad4879 2 жыл бұрын

@@brandyp.9602 Because microscopic colitis can only be seen under a microscope. They collect biopsies during a colonoscopy.

@smileylady485 2 жыл бұрын

@@autumnroad4879 same thing happened to me. The colonoscopy showed just part of the inflammation and it was the biopsy that showed more inflammation.

@nancyjachec7449 Жыл бұрын

Has anyone had success using budesonine ? no diarrhea returning after you finished the 3 mos?

@critter4004 4 ай бұрын

My dumb doctor didn't take biopsies and since it's only detected that way, he just said everything looked fine. @brandyp.9602

@annathomas4180 Жыл бұрын

I was diagnosed with lymphetic colitis in 2018 had horrible episode lasted almost 9 months than poof all was well...until this year came back been sick for almost 3 months...gets so old and completely alter your day to day activity...tired all the time...nice to hear others stories

@GutsUKCharity 3 ай бұрын

Hi Anna. This week is Microscopic Colitis Awareness Week. We are sharing more stories here: gutscharity.org.uk/awareness/microscopic-colitis-awareness-week/ - Amy

@stevengreenhaw231 Жыл бұрын

Just diagnosed…glad to hear your story

@phyllisnicholas2603 2 жыл бұрын

I also had great results with budesonide. Unfortunately, after it ran its course, the symptoms returned. My GI doctor suggested taking two tablespoons daily of Pepto Bismol. My symptoms now are greatly reduced. Thank goodness. Also, she recommended staying away from anything oral that contains magnesium, as that can cause diarrhea in those of us with lymphocytic colitis. Thank you for sharing and good luck.

@baboogoyal211 11 ай бұрын

You are okay now lymophtis colits

@alphb58 Жыл бұрын

Oh goodness hon symptoms sounds just like me! I'm 64 & am at wits end on what I have &/or don't have - so tired of tests & no complete correct diagnosis. Thank you so much for this upload going to ask Dr's to check maybe this is it? Who knows.

@dcproman Жыл бұрын

Had it for 20 years. Budesinide is a blessing.

@nancyjachec7449 Жыл бұрын

Is it gone for good?

@TheSpeedyone2 Жыл бұрын

I have had this since ten and just today diagnosed at 60!!!! I have been through the Fibro, IBS, etc...Hell. I like having a name to what is wrong with me, even if there is no complete cure. I believe mine is genetic and auto-immune. I test positive for Lupus and have bad artritis....so did my birth father.

@cathrynp3491 7 ай бұрын

I'm so glad to hear your story. It gives me hope as I just found out today after a dr. visit that I can take Budesimide for collageous colitis,, and it should help me. 90% of people get relief from this safer steroid. I've suffered horrifcally for a year with symptoms after diarrhea of 15 yrs. I get it and don't want anyone else to suffer with this. I hope my brain returns to normal after 4-5 hrs/sleep each night (with a big dose of ambien)

@GutsUKCharity 3 ай бұрын

Hello Cathryn. We are here for support should you need us.

@andrewgiladi3088 2 жыл бұрын

Entivio infusions every 8 weeks is finally helping me after 5 years of lymphocytic colitis...

@critter4004 4 ай бұрын

Thank you. Im convinced this is what I have had for years. I'm upset that my doctors didn't do biopsies during my colonoscopy last year!!! I assumed they would. 😢 I am pursuing a different gastro.

@GutsUKCharity 4 ай бұрын

We hope you find the answers you need. We are here if you need us. If you'd like our microscopic colitis information to take with you, please let us know via e-mail: info@gutscharity.org.uk.

@teresahelman1252 7 ай бұрын

I've been diagnosed with colitis, im sixty one it took years to get a diagnosis. I have constipation with mine , my flares are getting worse and lasting longer. I hurt with most things i eat , i also follow a pretty strict diet. I have a hard time coming out of a flare, cant eat yeast, have a severe dairy allergy to the point i have epi pens for anifalaxis symptoms. I take sulfa meds for inflamation it helps some but not much. I have a brother that has chrones so i think genetics play a part , any thought on handling severe flares would be appreciated.

@GutsUKCharity 3 ай бұрын

Hi Teresa. Sorry to hear you are experiencing severe flare-ups. Have you had the conversation with your doctor with regards to managing these?

@teresahelman1252 3 ай бұрын

@@GutsUKCharity thank you for your reply , I have talked to my Dr, he wanted me to take Prednisone but with my heart complications I'm skeptical with using them. I'm finally in remission hopefully for a while, the only way I have found to get it back under control is by going carnivore for several weeks as just eating meat is easy to digest and doesn't cause any inflammation in LG colon and I still follow a fairly strict diet. The carnivore gets old fast because I love vegetables. The last year has been rough but I'm learning better on what works and what doesn't also I can break my sulfa meds because they were to big to swallow so I'm doing better at taking them as I should.

@GutsUKCharity 3 ай бұрын

@@teresahelman1252 It's so important to know your body and do what works for you. If in doubt, always discuss things with your doctor.

@k2play1 2 жыл бұрын

I have a question about your diarrhea. Was it yellow?? I've been having these same issues. They can't figure it out. Many stool samples taken. Gone to the er 3 times since Thanksgiving for major dehydration. So I'm really interested to know. Thanks!

@carolyningalls4580 2 жыл бұрын

Hello ,Mine started after radiation from cancer.Ive had this ..Diarrhea for six years..I cant take steroids.Nor biologics due to risk of secondary cancer. i deal with such nasea. i take zofran and then Constipation but Then When I have flares i have accidents in my sleep . and All food goes through me. I had genetic testing and Found I have A genetic disease as well . genetic Hereditary Spastic paraplegia

@versewriter8123 3 ай бұрын

Do they know what the root cause is rather than only treat the symptoms?

@GutsUKCharity 3 ай бұрын

It is not yet clear what causes microscopic colitis. Risk factors such as bile acid malabsorption and some medications are currently being considered. This is why we support this condition. There needs to be much more research into it so that we can understand it better. This week is Microscopic Colitis Awareness Week; a vital week to raise awareness for such an underdiagnosed and often misdiagnosed condition. We are sharing information on our social media channels and also have an awareness page dedicated to this week on our website: gutscharity.org.uk/awareness/microscopic-colitis-awareness-week/ - Amy

@versewriter8123 3 ай бұрын

@@GutsUKCharity Thank you for answering my question.🌻

@user-js1ww5iq1y 2 жыл бұрын

Good afternoon, tell me do you have children? were you able to get pregnant and give birth with such problems? How do you drink Bunofalk now - do you regulate it yourself? no resistance?

@nanacc9 4 ай бұрын

Me too, and New Gastrologist is going in for biopsy. They diagnosed as IBS....

@nanacc9 4 ай бұрын

Dr thinks I have Microscopic Colitus.....would like answer,happens to older women as well. Finally a answer.

@GutsUKCharity 3 ай бұрын

@@nanacc9 Research shows that 1 in 3 people are misdiagnosed with IBS when it's actually microscopic colitis. Taking a biopsy is vital to diagnose microscopic colitis. - Amy