My Chronic Illness Journey - Episode 1 Lymphocytic Colitis

If you suffer from chronic illness, please join me in my journey. I will be sharing wins, frustrations, and just downright reality as I rearrange my life and goals around my new diagnosis of Lymphocytic Colitis.
Links:
General (and mostly unhelpful) info about LC: www.saintlukeskc.org/health-l...
Microscopic Colitis By Wayne Persky: www.amazon.com/Microscopic-Co...
Microscopic Colitis support forum: www.perskyfarms.com/phpBB/inde...
Praline Noel - Chronic illness journey: / @stomachsister
Find me on:
Facebook: / sheamcintoshford
Instagram: / sheamcintoshford
Ravelry: www.ravelry.com/people/string...
NaNoWriMo: nanowrimo.org/participants/sh...

[@lilybean1000]

I was just diagnosed with lymphocytic colitis today, after having diarrhea for a year. No pain. Looking forward to hearing your story.

[@dcproman]

In January 1990, following 10 days in Saudi Arabia and Bahrain, I developed almost uncontrollable diarrhea with 6-8 trips daily. After a few weeks will no relief, regardless of reduction of alcohol and restricted diet, I visited a gastroenterologist. We spent several weeks trying to rule out possible parasites and mid-East viruses, all to no avail. In mid-February I had a colonoscopy during which my doctor took several bioscopies. Immediate report was that the colon was clear, but several days later the report on the bioscopies identified collagenous colitis. While my doctor knew of this diagnosis, I was his first patient diagnosed with this condition. There was little information or research on the condition at that time. But he prescribed Dipentum, a Rx medication then being used for ulcerative colitis-an aspirin-type medication that travels to the gut before being absorbed. After about 6 weeks on this medication, my diarrhea cleared up and I was able to end medication and return to norma-life food and drink. I have had a colonoscopy at least every 5 years thereafter., each of which diagnosed collagenous colitis but without any obvious change in the condition of that layer of the bowel. Since 1990 I have had three flare ups-without being able to identify a reason for the flare ups. In 2013, in the middle of a wonderful restaurant meal, it hit me again. Thinking it might be just run-of-the mill diarrhea, I waited a week before consulting my gastroenterologist. At that time he prescribed Xifaxan, a medication then being prescribed primarily for IBS. After about 4 weeks on that medication, the flare up passed. I was hit with another flare up in the fall of 2019, while enjoying of meal at a friends home-had to excuse myself in the middle of the meal. Contacted my Doc the next day and he again prescribed Xifaxan-this flare up ended in about 3-4 weeks on that drug. My most recent flare up began in August of this year-again with no warning or other symptoms. My doc again prescribed Xifaxan. However, this time the symptoms had not subsides after almost 2 months on this drug that had worked before. Also during this time, my gastroerterologist of more than 30 years retired, but he referred me to his own gastroenterologist for follow-up. I saw the new gastro Doc the first week of November of this year, and he prescribed 900mg a day of Budesinide-a newer drug designed to treat my specific condition of collagenous colitis. I have been on Budesonide for 12 days , and have seen marked improvement in that short period. And I believe this drug has had a much more direct and fast acting result than any others. I will see my doctor at the end of next week for follow-up. Unlike you, and others on KZbin, having variations of microscopic colitis, I have never had any belly pain, other that the momentary indication before having to visit the commode. I also have been unable to identify any specific foods that might have triggered these four periods of flare up. When not in a flare up, I have no limits on food or drink. This lengthy comment is to let you know there are others with this condition but that there are variations of it. I also don’t suffer from many of the additional symptoms you are enduring. But I do understand the nature of your condition and believe your KZbin series will be a great resource for others. Please fell free to respond with thoughts or questions. Patrick

[@sarahlevy2793]

I’ve just been diagnosed with lymphocytic colitis… life has not been good at all. I’ve had this for years but only just been officially diagnosed from a biopsy. It’s hard work 😢

[@aaronbensi9723]

Hi.. Have had this disease for 2 years.. not fun .. Eating is a nightmare as you don’t know what is going to set you off.. l can eat something one day and be fine.. and another day be sick.. Also stress is a big factor in this disease.. you need to keep your stress down.. Lol.. You are right about raw vegetables.. none of that at all... stay away from tomatoes and peppers... Also seeds and grains.... The last thing is the brain fog.. yep comes and goes... with the fatigue... happy to chat with you.. just leave your email...

[@sheamcintoshford-author5494]

Yep, stress is my nemesis! 🤣 I feel like I can almost get into remission -- If I can avoid the stress. It's actually why it took me so long to respond to your reply! 😆 I had to get off much of social media there for a while. Feel free to email me, [e-mail]. Take care! 💜

[@candacefife6763]

You are telling my story. Except I’ve been looking for answers for the past 40 years. Still fighting the fight. I’m sitting here today waiting on my pathology report from my Dr. You are exactly correct no raw nothing. Just white rice, applesauce, white bread, crackers but you know the drill. I have an excellent Dr now not the usual IBS bs. I never have a remission.

[@sheamcintoshford-author5494]

It's a never ending battle, isn't it? I'm so glad you found a good doctor. There are so many who are absolutely clueless. I hope one day you are able to find remission! 💜

[@judithsalkeld2296]

Thanks, Shea, for taking the time to make this video and share your story. After dealing with chronic, moderate to severe lymphocytic colitis for more than 10 years, I'm finally looking for support to help cope with the issue. Family and friends try to be supportive, but don't seem to be able to understand the profound effect it has on your life. There's definitely some attitude that it might be at least partly an emotional rather than physical cause. Always easier to attribute that as the cause when another answer doesn't seem obvious or easy to understand. I've been treated by various gastroenterologists; lucky that during my initial colonoscopy for severe diarrhea, the doctor took biopsies and diagnosed the condition. However, as you point out, the doctors quickly prescribe a medication (in my case, budesonide - mesalamine wasn't very helpful) and then basically say "good luck with figuring out diet, lifestyle" and wait for remission. Remission periods have been very rare and brief during my journey. It's apparent that the patient is pretty much left to deal with it themselves. After so much time, wish I had more definitive insights and recommendations. Basically, I avoid dairy (oat milk is my good friend), high-fat and fried foods, sugary foods, gluten. Can't eliminate caffeine but I do limit the amount I drink. Cooked vegetables such as mashed butternut squash, sweet potato, other root types are usually okay. I do eat lean chicken. Will check out the book you show on your video. Good luck on your journey, it's great that you have your music and that puppy to make life happier:)

[@billbeck47]

Who's Shea? You referred to Shea which is @dcproman and signed off with PATRICK???

[@donnalee1152]

I was diagnosed with LC 11 yrs ago. Caffeine is one of the most triggering foods for me. Gave it up 10 yrs ago. I would definitely try if I were you. You would probably be very pleased with the result.

[@billbeck47]

My GI was worthless; I can eat eggs, nothing carbonated or caffiene, no catchup, mustard, spices other that salt. I can't have anything with Lactose, so I drink lactose free milk and ice cream. No cheeses, white bread is ify. If you look at ingredients when shopping, almost everything has milk in it or some spice. I can eat Liver sausage, Sliced turkey , a banana, Saltine crackers. My list of what I can eat is much shorter than what I can't eat. Oh, I can have fried chicken w/o breadingI collapsed from Anemia; My blood tested low on iron and I've been taking 65 mg Fe every night. I have a complete blood test every 3 months to maintain my iron. I've always been below normal on platelets, but never below 130. I can eat french fries, and potatos, mashed. Oh, when you take Iron 65mg per day you don't get diarhea, you are constipated.

[@billbeck47]

Oh, Imodium 2mg gel caps will stop diarrhea. Pepto doesn't work, GI doctors are worthless.

[@madmax3897]

I’m just 8 weeks into this and was just diagnosed with LC through a biopsy. I was first prescribed Budesonide but even with insurance it was going to cost $411 for 30 day supply. So, after consulting the Doctor again, I’ve been prescribed Lomotil. After listening to your video, I don’t think the doctor explained to me the long term effects of this very well. I was under the impression that I should be back to normal within a couple weeks with just a chance of a relapse. The last 8 weeks have been just as you described. Thank you for putting this video out on KZbin and I hope you keep posting your progress.

[@sheamcintoshford-author5494]

Thank you for watching! 💜 And yes, I've heard that for some people the Budesonide is crazy expensive. I don't understand that. It should be the same for everyone! I was fortunate in that it was relatively cheap for me. I think under $30. But I'm now 3 week off Budesonide and except for 1 flare up, my symptoms are controlled. Not gone, but better. Carnivore seems to be working for me. 😁 I'm so glad my story has helped you. Finding a doctor who understands this condition also is a big deal. There are too many who don't think food matters or that this will go away on it's own. Definitely keep digging because the more we find out about this the better. I need to get on the ball and put out another video. Time is short for recording while my boys are out of school. 🤪

[@kenbaardsen273]

Have u asked Pharmacy about discount programs

[@asiaslife8045]

Very informative, and I’m so sorry you and your family are going through this, we’ll definitely be praying for you all.

[@sarahyoung4166]

I’ve had IBS since the 60s, and just was diagnosed with lymphocytic colitis. I think the technology has to catch up with us because I also had a killer brain tumor that they found just the year that the machine was invented they could find it (1988). I am thrilled with all the high technology, but sometimes it is literally a pain in the butt! Blessings, DrRed ❤️💋

[@stargirl12387]

Thank you so much for sharing. I don’t feel so alone anymore ❤️

[@sheamcintoshford-author5494]

You are so welcome! 💜 That was a big reason I started doing these videos. It's difficult enough finding information about this condition. There definitely needs to be more awareness!

[@kenbaardsen273]

Best Wishes I'm struggling also .

[@aprilsmith2822]

Thank you for sharing! I was diagnosed with LC a little over a year ago.

[@MusicIsARainbow]

Fellow musician/KZbinr/pooper. I feel your pain! I’ve probably had LC since childhood and I had a severe flare-up in college that caused me to vomit for months. After many tests, doctor figured my gall bladder was diseased and removed it. It was healthy. Whoops. 🤦‍♀️ Years later I finally had a colonoscopy and was told there wasn’t much treatment for LC. Thank you for making this video! In bed after a bad night.

[@sheamcintoshford-author5494]

I am so sorry you had to go through misdiagnosis and all that trauma! ❤️ That seems to be a common issue I've noticed among MC sufferers. And it's so lousy (and yet somehow unmercifully expected) that you had a bad night. I hope you are able to feel better soon! ❤️ What kind of musician are you? Do you perform anywhere? How do you handle your symptoms if you do perform? I'm planning a whole episode on that, because I'm going to have to change all my music goals and plans now because of LC. Definitely no more wedding ceremonies. 😒

[@MusicIsARainbow]

@@sheamcintoshford-author5494 I sing and play the piano. Usually my LC episodes are worst in the mornings and my choir has concerts in the evenings, so it usually works out OK, but I have to rest a lot. I haven't had success with diet changes. I can go on a clear liquid diet for 5 days and still have diarrhea. Sometimes I just have to not eat, which really wears on me over time. If I need to drive my kids somewhere, then I have to skip eating. I absolutely LOVE harp! I'm so sorry about how this is impacting your life. My cousin is a covid long hauler and belongs to a group of long haulers. I can ask her if anyone else has had issues with their vocal cords. My cousin was a rock climber, yoga instructor, etc. and now it's a year later and she still can't run anymore. :( So heartbreaking! I finally got out of bed and got on my keyboard.

[@MusicIsARainbow]

P.S. Your dog absolutely cracked me up!

[@sheamcintoshford-author5494]

She is a nut! 😆 We're starting to call her the pirate puppy again. She needs a hair cut and frequently her fur will tend to mostly hang over one eye. 😂 It's so wonderful that you're still able to musically work through everything. Unfortunately, my symptoms are always worse in the evenings. I think what I'll have to do is to just do some low stress busking on good days (with my boys to help with the heavy lifting) just to see where I'm at. Isn't this virus the absolute worst?! It's almost like LC in that it affects different people differently. And there doesn't seem to be any rhyme or reason to it! I'm part of a long haulers group too. It's how I ended up going to Denver for my diagnosis. I haven't been able to find anyone who knows about the vocal cord issue yet, but if your cousin comes up with information, I would love to hear it! ❤️ I had to nap for a couple of hours myself today. This thing is soooo draining. (((HUGS!)))

[@wernerpeyton]

i got diagnosed today with this specifically so thank you for this!!

[@christinawilson6392]

I was diagnosed in 2013 and I also do the keto diet, which helps my symptoms. I’ve tried steroids, lialda, pepto therapy with no real relief. Honestly, the best thing that has helped me is intermittent fasting and keto along with stress reduction. I also suffer from lupus and overlap autoimmune issues and my GI believes these are all related. If you were gluten free during your celiac testing, your tests would remained negative even if you have celiac disease, and with your family history and severe sensitivity this may need to be looked at again. Wishing you the best on this journey ❤️

[@sheamcintoshford-author5494]

My sister recently told me, "autoimmune disease is like a pandora's box." Yes, I tested negative for celiac. I don't think my GI at the time tested for it with the biopsy when he did the endoscopy. He was pretty worthless. He did the blood test, but never instructed me to do a gluten challenge. I was eating gluten and went gluten free after they drew my blood, but I probably wasn't eating enough to trigger the test, as I was in too much pain to eat much of anything. I have loved eating keto! It was the best thing for me until covid. Now I'm attempting a carnivore diet to see if it helps. I'm so glad you found keto to help you! ❤️

[@Avise50]

@@sheamcintoshford-author5494 Paleo and Keto helped me for a few years until I got stuck in a severe flare and finally got a diagnosis. I will be so happy if I can get where I can eat Paleo and/or Keto again. Anything will make me so happy. I miss food! I am willing to eat only soup and smoothies for a couple years if that's what it take to heal my body enough to eat again! Eating nothing is best for me, too (:

[@sheamcintoshford-author5494]

Yes, I'm doing straight carnivore at the moment minus the eggs and dairy. But I miss frozen strawberries with heavy cream as they were soothing to my throat. But it's worth giving them up if carnivore will help put me into remission. I hope you're able to get back to Paleo or Keto soon! ❤️

[@juliechandler8695]

Waiting for biopsy results now.....glad to know there is support and the more we talk, the more people will know!!

[@gaybasehore5954]

Oh Shea I’m so sorry. I’ve lived with this for over 10 years and I know what you’re talking about. I have CC and found Wayne Persky soon after my diagnosis. It saved me. I was so overwhelmed and I have no husband, or young children…I know what you mean about the low energy and brain fog. They are real and the pain is as well, it can be very painful. I used to have to keep a waste can I could use to vomit in whilst I used the toilet…it’s awful. First look for ‘the potty people’ online…they are a group of wonderful people who will help you learn to live with this and together we will get more attention for this disease. It isn’t rare and it isn’t painless…I spent so many years not leaving the house due to the stress of this illness. I think you’re brave and doing a service with these videos. Thank you…for your courage and best of luck.

[@diannstrader2710]

I have celiac disease diagnosed at 33 waiting on biopsies for lymphatic colitis after recent colonoscopy; this is what I had when originally diagnosed with celiac disease I am now 46. Thank you for your video.

[@jodyhensley8567]

Just happened upon your channel and have only watched this first video. I am excited to hear if you go into remission. I have not. Started symptoms suddenly on 6/4/2019, confirmed diagnosis, after colonoscopy (and about 5 rounds of antibiotics, which resulted in C-Diff) with LC in Sept. 2019. I did not do Budesonide, as madmax stated it is extremely expensive, but I felt like I could not move on it. So, I have 2 scripts, Hyoscyamine for cramping and ondansetron for nausea (that I take only when needed). My diet restrictions are: no dairy, no raw veggies, fruit, no eggs, no oats, limited soy, limited gluten, limited alcohol, limited carbonation, meat and chicken has to be organic, grass fed, no antibiotics, fish has to be wild caught...it is a struggle. Moved last February to Buffalo NY and still looking for a GI. The first one I tried her, told me I was exaggerating my condition. That LC does not cause nausea, pain, it is only some diarrhea. Trust me if it was 'some' diarrhea, I would occasionally treat myself to some cheese. Thank you for chronicling your journey. Sadly, it gives me comfort that I am not crazy about the pain, the brain fog, the fatigue. Best of luck. Hope that in a future video I have yet to watch that you state you are in remission!!!

[@tashmeegan1849]

Hi! I have this disease too. I'm in Australia. It's very hard to work full time and be applied to personal life with the 'Russian Roulette' disease! I had the same issued going into hospital with getting an IV. I was so sick from dehydration before the procedures that showed the positive result that I wanted to just be knocked out. Took many tries at veins and parts of the body to get an IV in. It was the first time I woke up from a procedure marginally better! The rehydration helped a little. Re: your other aches and pains. I have psoriatic arthritis (which I think is mis diagnosed and is a different type - for another time). I think a lot of additional autoimmune diseases eventually get diagnosed once you have one, it's just the psychological damage that gets done until your first diagnosis due to being ignored and belittled and dismissed. I hope you are having a break and your budesonide is helping. I haven't taken it (for another time!). There are some great Facebook groups for this which I have found much advice and support from. Love and care Tash ❤

[@sheamcintoshford-author5494]

Hi Tash! Yes, autoimmune is definitely Pandora's Box, but yes the psychological damage from being dismissed for the first one for so long is just awful! It's complete gaslighting. I can imagine working full time with this disease can be extremely challenging! I've had jobs in the past that I couldn't imagine doing with this condition. I'm planning on doing an episode on how I'll have to reimagine the way I play music once everything opens up. I'm still trying to figure out what to eat. I thought I was doing okay with carnivore, and I kind of was, but I've got other people telling me, "No, chicken is okay, but no fatty beef." Meanwhile other sources say "no chicken." It's so confusing.🤷‍♀️ I think I just need to pick one, try it for a month, then move on if it doesn't work. I'm looking forward to seeing what happens when I get off the budesonide. I don't like having to rely on medications. Now that you mention it, I did feel better after the colonoscopy, probably because they hydrated me! 😆 Thank you so much for watching and I hope we can all help each other! ❤️

[@queenies805]

I was diagnosed with MLC 11 years ago, but on Budesenonide, but never really went into remission, but was able to get down to taking 1 capsule per day to sort of control of it. New GI doc in 2019 wanted to see me get off the long term use of Budensonide, so we tried a new med Cholestyramine packets, I take one every day with applesauce or liquid and it has worked wonders and also it is not expensive. I now can go out without worry of any accidents, and my stools are normal looking, you can also take up to 4 packets a day if necessary, and this is not a steroid. Good Luck to you in your journey to get better.

[@terri8687]

Exactly the same story I have. Was just removed from Budesinide, but am afraid of the powder because it said it can erode your teeth. Maybe I’ll try it now!

[@terri8687]

I’ve had this for over 20 years. Told due to years of taking Aleve for period pain and hangovers. Was just taken off Budesinide because it’s not for long term use, can affect your immune system. Going to try Cholestrum, but it says that it can erode your teeth, but what the hell? Bad teeth or living like this. Now I’ve had 2 er visits for fecal impaction which was insanely painful, so colonoscopy and endoscopy coming up in 2 weeks. I have 10 or more episodes a day.. I’ve just learned to live with it and accept it. Have a boat and am Leary to go on it. Anyway, glad to find this forum for support..

[@tayk385]

I just have been diagnosed with lymphocystis colitis just happen I had a colonoscopy already planned and the doctor put me on a FODMAP diet with budesonide 3 3mg in morning with my follow up in 6 weeks. I hope you get better soon. My doctors were great.

[@tetasnuttyworld6203]

I have this. Had problems for about 15 years before finally getting diagnosed. Was dismissed by many doctors for years. They just didn't get it. I'm much better now, but not at 100 percent, after being put on med about 3 years ago. I had lost 27 pounds by the time I was finally diagnosed

[@melaniebirkbeck9198]

I have this type of IBD too, took over 12 years to get diagnosed, I'm in UK ... there is hardly any Information or studies done.

[@sheamcintoshford-author5494]

Isn't that awful!? It's such a debilitating disease, and the medical community don't seem to want to help. If there's no monetary profit involved, no studies happen. 😒

[@Kandyman54]

I’ve had IBD since the late 1980’s. I was diagnosed with lymphocytic colitis on my 3rd colonoscopy/biopsy. My next colonoscopy (different doctor) I was told that there no such disease. Note to self: next time you get bad vibes from a Dr. RUN AWAY! Anyway, prescription sulfasalazine did not help. fasting, carnivore and keto have all helped. Bone broth is fantastic. An over-the-counter product called IB SootheR from Life Seasons helps. It contains triphala, caraway, slippery elm, marshmallow, and bifidobacteria. I had IgG food sensitivity testing which identified certain triggers to avoid. Good luck! I’m 70 years old and have been pretty good as long as I avoid triggering foods.

[@LaurenRosetta00]

Wow I was diagnosed today. Via colonoscopy. But I experienced symptoms for 13 months too and I think I was just prescribed the same medication haven’t seen the prescription but I don’t want to take it. Would like to go the natural route! Thank you for sharing your story

[@sheamcintoshford-author5494]

My pleasure! Isn’t awful that it had to take so long to figure it out?! I don’t blame you for not wanting to take the meds. I feel like doctors are way too quick to throw pills at people. I wish you the very best on figuring out what works for you! ❤️ Please let me know how it goes!

[@LaurenRosetta00]

@@sheamcintoshford-author5494 thank you I will! And I will be following you along on your journey as well. We are all in this together!

[@jannigjengockel1483]

I was diagnosed with this 6 months ago. Although I think I have had it for years and my primary care doctors dismissed it. I am now on budesonide and it seems to be keeping it mostly under control. Haven’t figured out exactly what foods trigger flares. My GI doctor seems to be quite good.

[@Avise50]

wow! I'm so glad I came across you. I hope you will keep sharing your journey on KZbin. I thought about sharing mine but I have nothing to report. I can only eat about ten different ingredients (a soup, a smoothie, fish, sweet potato, and herbal tea) so there's not much to share). I have been on budesonide since Dec. 4th , 2020 (diagnosed in Nov. 2020) and I don't think it's helping at all. I can't get in to see a good (hopefully good ) GI doctor until September of this year and my current G.I. is horrible! He tells me to eat gluten which has been my main trigger for five years! My LC all started when I contracted Cdiff five years ago. Before that I could eat anything with no issues. It's frustrating the lack of research out there. Thanks again for posting!

[@sheamcintoshford-author5494]

I can't believe your doctor is TELLING you to eat gluten! What a horrible doctor! The lack of medical knowledge about nutrition in general is awful, but the misinformation I'm running across in the medical community about LC is abhorrent. You should really think of sharing your journey anyway if you're up to it.. Even if you think there is nothing to report because you only eat 10 things, those 10 things still play a major factor in how this disease affects you. I'm rapidly coming to the conclusion that I can't eat out anymore. It was always a challenge before because of the risk of gluten contamination, but now I feel like I took eating out even that way for granted. It's a whole mindset change we have to face, and I think it's good for fellow sufferers to know they aren't alone in it. ❤️ I'm glad my story helped you and I hope you are able to get a better GI doc!

[@Avise50]

@@sheamcintoshford-author5494 Good idea. I’ll share my story since it might help. Question- Is there a way to share it where it’s not linked to my real profile? It sounds silly but I’m a teacher and really don’t want my students watching it 😳. It will definitely help if more of us start sharing our stories to get support out there for this unsupported disease.

[@sheamcintoshford-author5494]

I use to teach high school and totally understand! 😆 You'll probably have to create a separate account. Possibly a whole separate email. I would look at is as creating a new online person. Let me know if you do, I'd love to watch and support you! ❤️

[@Avise50]

@@sheamcintoshford-author5494 Just watching yours and a person who quit posting a year ago helped to boost my spirits! I will give it a try. I'll add a link when I post it. Maybe others out there will share their experiences. 🤗

[@sheamcintoshford-author5494]

@@Avise50 Yes! And I just saw that Praline posted a new video and you commented too. 😁 My theory is when one of us is having a flare and can't post, the others of us (I'm including you here! 😉) can pick up the down time to encourage others too. ❤️

[@kerrybraithwait693]

I am going to watch Episode 2 before I add more information, but I have mostly good GI doctors. My journey has been horrible as well. I am lucky that I don't have much pain. I had good luck with Budesonide for about two years and then it quit working. I'll try to add more after I watch Episode 2!

[@sheamcintoshford-author5494]

That's so wonderful you have good GI doctors! I'm finding most people fumble around with doctors who give conflicting information or flat out dismiss symptoms as "all in the head."

[@xandhir]

I have this too as well as several other inflammatory conditions. I have acid reflux. PPIs used to treat reflux can also cause this condition which is dumb they even put you through so much to try and find reflux. Recently I was changed to carafate which basically works like a PPI did to protect my stomach but instead for the intestines. However it isnt a treatment for LC. IBGaurd (I take the CVS generic) is the only help to counteracting a flair along with OTC antidiarrheals. I generally cant take steroids due to cortisol issues so doc is still trying to work out if I can try budesonide. To be honest everything this poor soul has said is trademark for Autonomic Dysfunction hope you were checked for that as well! A common occurrence for people post covid.

[@kathyr1516]

I had microscopic colitis which was caused by an SSRI called Zoloft. It is a terrible condition. It went away when I stopped taking Zoloft and went onto a different medication.

[@julieryals4566]

I have been told since I was 17 that I had IBS. It was horrible at many times in the last 23 years. This time when it was really bad, the gastro did a colonoscopy with biopsy. I was having diarrhea 8 times a day. Biopsy showed LC and I just found out today. I’ve had numerous tests for gluten sensitivities and for autoimmune stuff and it’s always negative. I just had Covid in June 2021, before my colonoscopy and with the steroids, it was the best my stomach had felt in several months! I’ve had joint pain and sinus stuff. Is that a thing? It’s so hard to find info!!

[@sheamcintoshford-author5494]

I like how Wayne Persky interprets a diagnosis of IBS. He calls it "I Be Stymied." GI docs will "diagnose" you with IBS when they really have no clue what is wrong. My gluten tests came back negative as well, yet I'm clearly very sensitive to it. I highly suggest reading Persky's book because yes, he goes into how joint pain and sinus inflammation is a thing with MC. Also, (and this is why I'm convinced carnivore works for me) Dr. Ken Berry has a video on autoimmune diseases and goes into the science of why eating plants might play a role in it. kzbin.info/www/bejne/eYinXoSso7CKp80 Isn't it awful how difficult it is to find information!? I think the big reason is because this thing is primarily controlled by diet. There's no money in that for big pharma, therefore no research to fund any meaningful study for answers.

[@janeshipley6993]

i hope that you will have a blood draw at your family physician or internist’s office to test for dna evidence of celiac disease. it’s easy and it’s needed to rule out celiac entirely. and, as another commenter stated, you need to eat a certain amount of gluten for a certain amount of time beforehand apparently for it to show on colonoscopy. other than the possibility of celiac, doctors are a scourge…especially for women. keep researching yourself so that you’ll know what tests to ask for. i wish you much luck!

[@asiaslife8045]

I would like to know does this cause hair loss? The reason I ask is I’ve been losing my hair.

[@katrina4013]

Thanks for sharing your story. I had an anal fissure and then started having frequent diarrhea. I had a colonoscopy and endoscopy at the same time they found some lymphocytic colitis. I thought it was caused by ibuprofen but maybe it was just aggravated by it. I was also wondering if the vaccine had something to do with it. I got better the Nerva app really helped and took probiotics. I also had to have an iron infusion. Now it has come back and I am not yet healed from the fissure. I just had my Covid booster a few weeks ago. Is there a correlation? I support the vaccine but am wondering. I’m back on the Nerva app and probiotics again.

[@sheamcintoshford-author5494]

Thank you so much for watching! 💜 Ibuprofen is definitely a problem with LC. I had been taking it too till my diagnosis. I didn't have trouble with my first two shots of the vaccine, but did have trouble with the booster, which I got at the same time as my flu shot. But my increased symptoms only lasted about a week. It *could* be possible that the vaccine triggered the LC, but from my experience, the virus itself triggered my LC, so 🤷‍♀️ I've never heard of the Nerva app! I'm glad it's helping you! 💜 Stress can absolutely be a trigger for LC and I've heard from others that it's what brought on the LC to begin with. The only thing I'm hesitant about is that the app claims that diet isn't a factor. I'm more inclined to believe that the app paired with diet would be highly beneficial. Due to my food reactions, I've focused quite a bit, not just on nutrition, but the food industry and all the garbage they put into us, especially things they claim to be healthy. I also used to have low iron. That hasn't been a problem since I cut out processed food. I hope you're able to find relief soon! 💜

[@katrina4013]

@@sheamcintoshford-author5494 thanks for your reply. I too have low iron and had to have a transfusion after a flare up. Diet is definitely part of the healing journey but I dream of having a coffee and cinnamon bun on my front porch one day. The simple things we take for granted!

[@sheamcintoshford-author5494]

@@katrina4013 The simple things indeed! I think what makes it harder is see the people around us enjoy them. 💜

[@asiaslife8045]

Ulcerative colitis which I know you didn’t say you have that buuut it causes respiratory and health palpitations.

[@jeannejarrell9841]

I have this disease along with Sjögren’s syndrome

[@sheamcintoshford-author5494]

Oooh, Sjogren's must make the LC more difficult! I know that digestion begins with the salivary glands and if those aren't functioning well, it must make it harder for the LC symptoms! I warned my hubby that it's likely that now that I have been officially diagnosed with an autoimmune disorder, the chance of my developing something else goes way up. 😔

[@kevinjoseph517]

i dont hear anything

[@peterrubenstein6511]

The sound effects are driving me crazy, very disruptive.

[@doraa.7873]

Yes, they are distracting and serve no purpose.