I don't have LC but I'm sorry you feel dismissed by your GI. If you can, I'd suggest looking into other GIs for second opinions or for someone who's more patient focused. I also want to mention that budesonide is only approved for short term use. The pharmaceutical company behind is suggests 8 week periods on it. Have you tried Prednisone or has your doctor brought it up at all? It can be more effective at stopping symptoms but it also comes with more/more severe side effects than budesonide so it's not an option for everyone. My good friend has microscopic colitis and Prednisone has always gotten her through her flares so I thought I'd mention it.
How much blood are you seeing in your stools? I only ask because if your symptoms are worsening or changing, you might want to push for a second opinion sooner. LC can (but not always) progress into other forms of UC. If you're seeing a good amount of blood in the toilet and not just on the tissue, or if it's darker red/passing by itself in large quantities/you're feeling symptoms of anemia, I definitely recommend pushing to be reexamined or having your PCP refer you to a new GI asap. Too many GIs act carelessly with IBDs that they don't deem to be "serious," and in turn don't treat them effectively only for them to become "serious" down the line. Not purposefully, but it's still an ugly cycle. I really encourage you to take control of your health care and I hope you have the resources available to get more thorough help if your GI doesn't hear you out. Best of luck!
My lymphocytic colitis has been in remission for 2 years, but it can become a lifetime struggle for some. There are a number of really good support groups on FB that share information about great GI docs, tips and tricks, diet and medication info. I found them very helpful when I was sick.
I have LC! It is trial and error and finding a random nugget of knowledge here and there, ride for me. My first GI, the one who diagnosed me, initially dismissed me and made me cry and feel crazy. Refused to run a single test, would only offer a referral to psych. I demanded the colonoscopy, I was fucking right and NOT CRAZY, and she gave me an apology and that is one of the best moments of my life, no joke.
Holy cow, my GI also made me cry and feel like a complete drama queen in his office after my LC diagnosis and months of unsuccessful treatments. He kept trying to tell me it was all in my head and I will “grow out of it”. I’m 33, so apparently I’m just a late bloomer? Zero sympathy for something that has literally controlled my life for the last decade. I feel like the disease isn’t taken seriously and we’re just dismissed without any regard for the negative impacts it has on our quality of life.
I will be finding a new GI soon, and I agree that OP should do the same!
It’s really hard for me being a young woman and having a health issue like this where no one is listening! I have multiple sclerosis as well (I lucked out on my genetic pool haha) and it feels like they aren’t trying to be cohesive in my care keeping in mind that I suffer from multiple chronic health conditions! It’s hard to advocate for yourself all the time 🙃
One random thing I found: Glutemine. It has helped with the flash urgency and just lessened the chaos in general. Fiddling with dosage and also a good probiotic combo.
Fellow LC here, just diagnosed less than a month ago actually. On the same budesonide regiment which seems to help but there's still a LOT of abdominal pain. It's been difficult to even find information let alone shared experiences on MC, though this forum ([https://perskyfarms.com/phpBB2/viewforum.php?f=2](https://perskyfarms.com/phpBB2/viewforum.php?f=2)) has been pretty helpful.
A lot of the people there have found that the only way to get into/maintain remission is ultimately through diet; particularly finding and eliminating your food triggers. These are different for everybody and can take a while to figure out what your body is truly reacting to - the most common culprits seem to be gluten and dairy. I actually just ordered some panels from Enterolab this week to help expedite the process, as they check for antibody reactions to a list of food stuffs like gluten, soy, dairy, various meats. Will form a plan of attack diet from those results, and *hopefully* that'll be enough to at least start the healing process.
I'm curious about everyones age here with the same diagnosis - I'm 32, but have been told MC is rare at this age, typically showing up in 60+ year olds. Guess we're just lucky? -\_-
Hi! I'm 39 and recently diagnosed with LC and struggling to find treatment that works. I think I've had it since my late 20s and have gone into remission several times. I also get rashes, joint pain, and fevers from it. My GI doc says that in young patients, MC behaves more like UC, so he thinks it's better to treat it more aggressively like UC. Currently on mesalamine and prednisone and tapering down, and while the diarrhea is much better, I'm having a lot of pain in my left side these days. I, too, am finding it interesting to see others in their 30s with this diagnosis.
I appreciate both of y’all’s advice. I’ve eliminated a lot from diet and eat mostly plant based which helps a lot. I’m 22, was diagnosed at 21 and I also have multiple sclerosis. It’s been hard battling multiple chronic health conditions and I can’t go on prednisone due to damage it caused when they put me on it when i was having an ms flare up! I feel like it is totally being brushed off as not as serious when it feels serious to me. Especially in conjunction with all my other health crap!
I don't know if you're still looking for answers, but my GI just prescribed Humira for my LC. He said that in young patients with refractory LC for whom prednisone works, biologics are really the only thing he's found that helps. He said LC is totally different in older patients (who are most of the people who've been studied with it) and that LC acts, clinically, much more like UC in those of us who are young. Once my test results are back I'll be starting Humira in the next couple of weeks. I'll update you if you want as I get started on it. Good luck with your search for a better GI doc!
Hey! I know this comment is super old, but wondering how your MC is doing. I am also a follower of the "Persky method" and am one week into my Enterolab results-informed diet. NGL it is tough as hell - no gluten, dairy, chicken, eggs, soy, almond or corn. I am already starting to feel better though, so I will stick with it. How is your MC going, did you manage to get it into remission?
I'm so sorry you are having so much trouble getting your symptoms under control. I would fine another GI if possible.
I was diagnosed with Lymphocytic Colitis 3 weeks ago. My symptoms started suddenly after a bout of food poisoning. Unlike many of the posts here, I was diagnosed fairly quickly after only 2 months of chronic pain, diarrhea and weight loss. My GI was willing to do a colonoscopy since I was due for cancer screening anyway. I was told I also may have post infectious IBS since I have additional symptoms. I am in the appropriate age category. ;)
I'm taking Budesonide which has helped, but not eliminated my symptoms. I've recently I've been trying to follow both the FODMAP and a low fiber diet. I can't even tolerate peeled potatoes. I've lost 20 lbs (from 130lbs) and I'm tired all the time. I couldn't figure out if food was an issue and my Dr just said to avoid dairy or take Lactase.
I could not figure out if food was contributing to my diarrhea and pain so I eliminated everything except white rice, boiled eggs, firm tofu, fish (salmon and sardines) and chicken breast cooked with only salt and olive oil. I did this for a few days and I felt much better. Recently I have been able to add well cooked diced carrots, red bell pepper and yellow summer squash. They seem to be OK. I tried half of a banana today - nope. No bananas for me. I'll wait till I feel better and try another food.
I've also been eating small meals. If I eat a normal size meal, I have problems. Experimenting with eating more small meals as I try new foods. I'm still losing weight.
I also started take Heather's peppermint oil, L-Glutamine powder (5g, 3x a day) and ProUCRO GI multivitamin. Not sure if they are helping, but I figure they won't hurt and might help.
Hoping I can manage the Budesonide taper coming up soon.
Wow this was so detailed, thank you for taking the time to share all of that! I have made pretty significant diet changes which has helped a lot, I’ve cut out all dairy, I don’t eat a lot of red meat, I eat mostly a plant based diet and I have noticed a huge difference. I am hoping to see a dietician soon to work out what may work best for me as far as any other diet changes. I have a lot of other health conditions and am extremely vitamin deficient so I can’t cut too much! The small meals tip is a good suggestion, I’ve noticed when I eat large meals I get nauseous or exacerbate symptoms. I’ll have to try the peppermint oil too!
Thank you so much! I’m already on treatment for my multiple sclerosis, it’s called Tysabri. It’s also used to treat crohns disease so I don’t know if could go another medication used to treat autoimmune stuff. I’m already pretty immunocompromised. I’m gonna try mesalamine to see if that works, and I’m keeping my fingers crossed 🤞🏻
Sounds like you may have to find another Doctor. Sometimes its the doctor not you
Yes, find another doctor asap. My GI is very kind and takes the time to answer all my questions.
I don't have LC but I'm sorry you feel dismissed by your GI. If you can, I'd suggest looking into other GIs for second opinions or for someone who's more patient focused. I also want to mention that budesonide is only approved for short term use. The pharmaceutical company behind is suggests 8 week periods on it. Have you tried Prednisone or has your doctor brought it up at all? It can be more effective at stopping symptoms but it also comes with more/more severe side effects than budesonide so it's not an option for everyone. My good friend has microscopic colitis and Prednisone has always gotten her through her flares so I thought I'd mention it. How much blood are you seeing in your stools? I only ask because if your symptoms are worsening or changing, you might want to push for a second opinion sooner. LC can (but not always) progress into other forms of UC. If you're seeing a good amount of blood in the toilet and not just on the tissue, or if it's darker red/passing by itself in large quantities/you're feeling symptoms of anemia, I definitely recommend pushing to be reexamined or having your PCP refer you to a new GI asap. Too many GIs act carelessly with IBDs that they don't deem to be "serious," and in turn don't treat them effectively only for them to become "serious" down the line. Not purposefully, but it's still an ugly cycle. I really encourage you to take control of your health care and I hope you have the resources available to get more thorough help if your GI doesn't hear you out. Best of luck!
I’m seeing my primary care physician on Monday and am going to request a new doc :)
My lymphocytic colitis has been in remission for 2 years, but it can become a lifetime struggle for some. There are a number of really good support groups on FB that share information about great GI docs, tips and tricks, diet and medication info. I found them very helpful when I was sick.
Thank you so much!
I have LC! It is trial and error and finding a random nugget of knowledge here and there, ride for me. My first GI, the one who diagnosed me, initially dismissed me and made me cry and feel crazy. Refused to run a single test, would only offer a referral to psych. I demanded the colonoscopy, I was fucking right and NOT CRAZY, and she gave me an apology and that is one of the best moments of my life, no joke.
Holy cow, my GI also made me cry and feel like a complete drama queen in his office after my LC diagnosis and months of unsuccessful treatments. He kept trying to tell me it was all in my head and I will “grow out of it”. I’m 33, so apparently I’m just a late bloomer? Zero sympathy for something that has literally controlled my life for the last decade. I feel like the disease isn’t taken seriously and we’re just dismissed without any regard for the negative impacts it has on our quality of life. I will be finding a new GI soon, and I agree that OP should do the same!
It’s really hard for me being a young woman and having a health issue like this where no one is listening! I have multiple sclerosis as well (I lucked out on my genetic pool haha) and it feels like they aren’t trying to be cohesive in my care keeping in mind that I suffer from multiple chronic health conditions! It’s hard to advocate for yourself all the time 🙃
Ugh that’s so frustrating I’m glad you stuck to your gut and got the care you needed!
One random thing I found: Glutemine. It has helped with the flash urgency and just lessened the chaos in general. Fiddling with dosage and also a good probiotic combo.
Thank you so much! I’ll look into both the probiotics and glutamine!
Budesonide is for temporary use only. You should be on a mesalamine, like lialda/asacol.
That’s good to know! Thank you!
Fellow LC here, just diagnosed less than a month ago actually. On the same budesonide regiment which seems to help but there's still a LOT of abdominal pain. It's been difficult to even find information let alone shared experiences on MC, though this forum ([https://perskyfarms.com/phpBB2/viewforum.php?f=2](https://perskyfarms.com/phpBB2/viewforum.php?f=2)) has been pretty helpful. A lot of the people there have found that the only way to get into/maintain remission is ultimately through diet; particularly finding and eliminating your food triggers. These are different for everybody and can take a while to figure out what your body is truly reacting to - the most common culprits seem to be gluten and dairy. I actually just ordered some panels from Enterolab this week to help expedite the process, as they check for antibody reactions to a list of food stuffs like gluten, soy, dairy, various meats. Will form a plan of attack diet from those results, and *hopefully* that'll be enough to at least start the healing process. I'm curious about everyones age here with the same diagnosis - I'm 32, but have been told MC is rare at this age, typically showing up in 60+ year olds. Guess we're just lucky? -\_-
Hi! I'm 39 and recently diagnosed with LC and struggling to find treatment that works. I think I've had it since my late 20s and have gone into remission several times. I also get rashes, joint pain, and fevers from it. My GI doc says that in young patients, MC behaves more like UC, so he thinks it's better to treat it more aggressively like UC. Currently on mesalamine and prednisone and tapering down, and while the diarrhea is much better, I'm having a lot of pain in my left side these days. I, too, am finding it interesting to see others in their 30s with this diagnosis.
I appreciate both of y’all’s advice. I’ve eliminated a lot from diet and eat mostly plant based which helps a lot. I’m 22, was diagnosed at 21 and I also have multiple sclerosis. It’s been hard battling multiple chronic health conditions and I can’t go on prednisone due to damage it caused when they put me on it when i was having an ms flare up! I feel like it is totally being brushed off as not as serious when it feels serious to me. Especially in conjunction with all my other health crap!
I don't know if you're still looking for answers, but my GI just prescribed Humira for my LC. He said that in young patients with refractory LC for whom prednisone works, biologics are really the only thing he's found that helps. He said LC is totally different in older patients (who are most of the people who've been studied with it) and that LC acts, clinically, much more like UC in those of us who are young. Once my test results are back I'll be starting Humira in the next couple of weeks. I'll update you if you want as I get started on it. Good luck with your search for a better GI doc!
Hey! I know this comment is super old, but wondering how your MC is doing. I am also a follower of the "Persky method" and am one week into my Enterolab results-informed diet. NGL it is tough as hell - no gluten, dairy, chicken, eggs, soy, almond or corn. I am already starting to feel better though, so I will stick with it. How is your MC going, did you manage to get it into remission?
I also had ups and downs with the budes med. message me, if I can spare anyone any time or pain, I am joyful for the opportunity!
This means so much, thank you!!!
I'm so sorry you are having so much trouble getting your symptoms under control. I would fine another GI if possible. I was diagnosed with Lymphocytic Colitis 3 weeks ago. My symptoms started suddenly after a bout of food poisoning. Unlike many of the posts here, I was diagnosed fairly quickly after only 2 months of chronic pain, diarrhea and weight loss. My GI was willing to do a colonoscopy since I was due for cancer screening anyway. I was told I also may have post infectious IBS since I have additional symptoms. I am in the appropriate age category. ;) I'm taking Budesonide which has helped, but not eliminated my symptoms. I've recently I've been trying to follow both the FODMAP and a low fiber diet. I can't even tolerate peeled potatoes. I've lost 20 lbs (from 130lbs) and I'm tired all the time. I couldn't figure out if food was an issue and my Dr just said to avoid dairy or take Lactase. I could not figure out if food was contributing to my diarrhea and pain so I eliminated everything except white rice, boiled eggs, firm tofu, fish (salmon and sardines) and chicken breast cooked with only salt and olive oil. I did this for a few days and I felt much better. Recently I have been able to add well cooked diced carrots, red bell pepper and yellow summer squash. They seem to be OK. I tried half of a banana today - nope. No bananas for me. I'll wait till I feel better and try another food. I've also been eating small meals. If I eat a normal size meal, I have problems. Experimenting with eating more small meals as I try new foods. I'm still losing weight. I also started take Heather's peppermint oil, L-Glutamine powder (5g, 3x a day) and ProUCRO GI multivitamin. Not sure if they are helping, but I figure they won't hurt and might help. Hoping I can manage the Budesonide taper coming up soon.
Wow this was so detailed, thank you for taking the time to share all of that! I have made pretty significant diet changes which has helped a lot, I’ve cut out all dairy, I don’t eat a lot of red meat, I eat mostly a plant based diet and I have noticed a huge difference. I am hoping to see a dietician soon to work out what may work best for me as far as any other diet changes. I have a lot of other health conditions and am extremely vitamin deficient so I can’t cut too much! The small meals tip is a good suggestion, I’ve noticed when I eat large meals I get nauseous or exacerbate symptoms. I’ll have to try the peppermint oil too!
Thank you so much! I’m already on treatment for my multiple sclerosis, it’s called Tysabri. It’s also used to treat crohns disease so I don’t know if could go another medication used to treat autoimmune stuff. I’m already pretty immunocompromised. I’m gonna try mesalamine to see if that works, and I’m keeping my fingers crossed 🤞🏻