I am a newbie on this site. I was diagnosed with lymphocytic colitis 2 months ago and it has been a nightmare. The doctor put me on budesonide right away but the condition got worse. He than put me on 8 Pepto Bismal tablets a day which didn't work either. He now wants to put me on mesalamine but I read it has so many side effects so I am nervous to take it. Has anyone tried it and found it helpful? I have cut out gluten and lactose but I still have eggs once in awhile they don't seem to bother me. I have lost 6 lbs since I was diagnosed because I am constantly in the bathroom. I have read a lot of the posts on this site and I know that I am not alone and I feel it is very helpful. I would appreciate any suggestions from the group.
Thanks,
Miley
Lymphocytic colitis
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hello Miley,
Welcome to this caring group of wonderful people who really understand your challenges.
I am a newbie with LC, diagnosed just a couple of months before you. I cannot offer advice yet as I am too new and am currently in a week-long flare after initial success with Budesonide.
But I can offer sympathy and empathy! It is a frustrating disease, which affects so many aspects of our lives.
Welcome to this caring group of wonderful people who really understand your challenges.
I am a newbie with LC, diagnosed just a couple of months before you. I cannot offer advice yet as I am too new and am currently in a week-long flare after initial success with Budesonide.
But I can offer sympathy and empathy! It is a frustrating disease, which affects so many aspects of our lives.
Some days there won't be a song in your heart. Sing anyway. —Emory Austin
Hi Harmony,
Thanks so much for getting back to me and your kind words. It really helps me to know there are people out there who understand what I am going through and are very supportive.
I am sorry to hear you are in a flare up and I do hope it subsides very soon. I see you have so many food intolerances what can you eat? I am trying to see what agrees with me but it is too early to know. I guess it will take time.
Miley
Thanks so much for getting back to me and your kind words. It really helps me to know there are people out there who understand what I am going through and are very supportive.
I am sorry to hear you are in a flare up and I do hope it subsides very soon. I see you have so many food intolerances what can you eat? I am trying to see what agrees with me but it is too early to know. I guess it will take time.
Miley
Hello again Miley,
I am still mostly on Gabe’s Stage One food plan. I have added a few foods since then, but not many.
We have a great local butcher. I make bone broth soups for proteins with cooked green beans, spinach, celery and/or carrots. I do tolerate potatoes, so make mashed without skins. I rotate the proteins, due to the +1 reaction on the Enterolab test. I tolerate corn—not the kernels, but the flour—so I eat dry Kix cereal for breakfasts. For snacks, I eat Lay’s low salt potato chips, Lays Poppables, a few cashews or cashew butter or a couple of gluten free cookies that don’t have rice flour (hard to find, but some use potato starch) I am luckily able to tolerate the casein in dairy products, so I rotate a couple of hard cheeses without lactose. The toughest thing for me is that I really cannot tolerate any chilis, peppers or nightshade spices made from those, which are added to so many foods for flavor.
This flare started right after I tried cauliflower, cooked then mashed like potatoes. It was either that or perhaps histamines as my spring allergies are worse than usual. Fortunately, the D is not as often or as urgent as when I had to stay home for 8 weeks before I was diagnosed. I can go to meetings if I take an Imodium.
I hope someone can give you their experiences on mesalamine. Did you try a search with that as a keyword and read the threads that came up?
I am still mostly on Gabe’s Stage One food plan. I have added a few foods since then, but not many.
We have a great local butcher. I make bone broth soups for proteins with cooked green beans, spinach, celery and/or carrots. I do tolerate potatoes, so make mashed without skins. I rotate the proteins, due to the +1 reaction on the Enterolab test. I tolerate corn—not the kernels, but the flour—so I eat dry Kix cereal for breakfasts. For snacks, I eat Lay’s low salt potato chips, Lays Poppables, a few cashews or cashew butter or a couple of gluten free cookies that don’t have rice flour (hard to find, but some use potato starch) I am luckily able to tolerate the casein in dairy products, so I rotate a couple of hard cheeses without lactose. The toughest thing for me is that I really cannot tolerate any chilis, peppers or nightshade spices made from those, which are added to so many foods for flavor.
This flare started right after I tried cauliflower, cooked then mashed like potatoes. It was either that or perhaps histamines as my spring allergies are worse than usual. Fortunately, the D is not as often or as urgent as when I had to stay home for 8 weeks before I was diagnosed. I can go to meetings if I take an Imodium.
I hope someone can give you their experiences on mesalamine. Did you try a search with that as a keyword and read the threads that came up?
Some days there won't be a song in your heart. Sing anyway. —Emory Austin
Hi Miley,
Welcome to the group. I found that keeping a food and reaction journal was very helpful when I was initially trying to resolve my symptoms. But until I had been totally avoiding gluten for at least several months, I couldn't tell with any reliability which foods were causing me to react. After avoiding gluten for several months, then my record keeping began to make sense. Back in those days, I wasn't even aware of EnteroLab, so I had to use trial and error testing. These days, I would just cut to the chase and order some EnteroLab tests to pinpoint the problem foods that I needed to avoid. Their test results can save many months of trial and error diet testing.
Again welcome aboard, and please feel free to ask anything.
Tex
Welcome to the group. I found that keeping a food and reaction journal was very helpful when I was initially trying to resolve my symptoms. But until I had been totally avoiding gluten for at least several months, I couldn't tell with any reliability which foods were causing me to react. After avoiding gluten for several months, then my record keeping began to make sense. Back in those days, I wasn't even aware of EnteroLab, so I had to use trial and error testing. These days, I would just cut to the chase and order some EnteroLab tests to pinpoint the problem foods that I needed to avoid. Their test results can save many months of trial and error diet testing.
Again welcome aboard, and please feel free to ask anything.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Hi Harmony,
Thanks again. Where did you find Gabe's Stage One Food plan? I am not familiar with that but I am willing to try it.
I also take immodium when I need to go someone for a few hours and it does help. I didn't do a search on the mesalamine but I will. I used to take Advil for back problems and someone told me that might have caused the LC. Mesalamine has an antiflammatory in it so that is why I am hesitant in taking it. Thanks for the suggestion I will read up on it.
Thanks again. Where did you find Gabe's Stage One Food plan? I am not familiar with that but I am willing to try it.
I also take immodium when I need to go someone for a few hours and it does help. I didn't do a search on the mesalamine but I will. I used to take Advil for back problems and someone told me that might have caused the LC. Mesalamine has an antiflammatory in it so that is why I am hesitant in taking it. Thanks for the suggestion I will read up on it.
-
tommyboywalker
- Adélie Penguin
- Posts: 126
- Joined: Tue Jan 23, 2018 3:49 pm
Hi Miley,
I contracted Lymphocitic Microscopic Colitis following a bout of a parasitic infection from gulping a little lake water on my daily swim (Cryptosporidium)
I lost 35 pounds before we got this dang thing figured out so I do and WE do know what you are going through. I will tell you this. After an extended time and a slow taper with Budesonide (which worked very well for me) I am now symptom free and have picked up most of the weight again. So keep the faith!! Many of us have found some success with this troublesome disease. I am no longer taking Budesonide but to keep this in check, I am gluten free, dairy free, low fat, low sugar, small meals. That is the ticket for me. Everybody is a little bit different.
I also have completely discontinued all NSAIDS (aspirin, naproxen sodium, ibuprofen, etc). I was taking 880 mg of Aleve (Naproxen) every day for years for chronic pain. Then the Crypto parasite hit me and we feel that the Crypto along with the years of NSAIDS was the perfect storm/setup for the colitis to develop.
I completely agree with Tex's recommendation to use Enterolab testing. It isn't cheap but it is money well spent and a good guideline as to what your GI can tolerate.
And along with no gluten, I would highly recommend that you eliminate dairy as well. It is very common for most of us to have trouble digesting it.
All the best to you, please keep us updated; we like updates! This forum is a really great group of caring, educated folks.
I contracted Lymphocitic Microscopic Colitis following a bout of a parasitic infection from gulping a little lake water on my daily swim (Cryptosporidium)
I lost 35 pounds before we got this dang thing figured out so I do and WE do know what you are going through. I will tell you this. After an extended time and a slow taper with Budesonide (which worked very well for me) I am now symptom free and have picked up most of the weight again. So keep the faith!! Many of us have found some success with this troublesome disease. I am no longer taking Budesonide but to keep this in check, I am gluten free, dairy free, low fat, low sugar, small meals. That is the ticket for me. Everybody is a little bit different.
I also have completely discontinued all NSAIDS (aspirin, naproxen sodium, ibuprofen, etc). I was taking 880 mg of Aleve (Naproxen) every day for years for chronic pain. Then the Crypto parasite hit me and we feel that the Crypto along with the years of NSAIDS was the perfect storm/setup for the colitis to develop.
I completely agree with Tex's recommendation to use Enterolab testing. It isn't cheap but it is money well spent and a good guideline as to what your GI can tolerate.
And along with no gluten, I would highly recommend that you eliminate dairy as well. It is very common for most of us to have trouble digesting it.
All the best to you, please keep us updated; we like updates! This forum is a really great group of caring, educated folks.
Miley,
If you go to the very top of this website, and click on Suggested Eating Plan, you will find Gabe’s comprehensive healing meal suggestions. It is not easy to accept, but if you follow it, it is easier than the symptoms you are suffering from now!
https://perskyfarms.com/phpBB2/viewtopic.php?t=22328
And I second the worth of the expense for Enterolab. It saved me so much time while figuring out my specific intolerances. We are all so different (except for gluten-free)
Keep us posted on your progress!
Steph
If you go to the very top of this website, and click on Suggested Eating Plan, you will find Gabe’s comprehensive healing meal suggestions. It is not easy to accept, but if you follow it, it is easier than the symptoms you are suffering from now!
https://perskyfarms.com/phpBB2/viewtopic.php?t=22328
And I second the worth of the expense for Enterolab. It saved me so much time while figuring out my specific intolerances. We are all so different (except for gluten-free)
Keep us posted on your progress!
Steph
Some days there won't be a song in your heart. Sing anyway. —Emory Austin
Hi Miley,
I tried Lialda, which is a brand name of Mesalamine and found it to be somewhat helpful. My doctor presented it as a "mild" medication and I was lucky in that I experienced no side effects from the medication. Of course, everyone is different and I would encourage you to stay in close contact with your dr. when/if you decide to try the medication. But my experience of the med was relatively simple.
If I remember correctly, the dose when you're in a flare is 4 pills and then you can drop down to 2 pills or 1 pill when things are stable.
There are also several different brand names of mesalamine. Some of what you try may depend on your doctor's preference and some may depend on what your insurance covers.
I will say that my dr. added Lialda in addition to Budesonide once it was clear I was still struggling. I'm not sure if you're going to get much benefit from Mesalamine alone? But you never know!
Hope that helps!
Lisa
I tried Lialda, which is a brand name of Mesalamine and found it to be somewhat helpful. My doctor presented it as a "mild" medication and I was lucky in that I experienced no side effects from the medication. Of course, everyone is different and I would encourage you to stay in close contact with your dr. when/if you decide to try the medication. But my experience of the med was relatively simple.
If I remember correctly, the dose when you're in a flare is 4 pills and then you can drop down to 2 pills or 1 pill when things are stable.
There are also several different brand names of mesalamine. Some of what you try may depend on your doctor's preference and some may depend on what your insurance covers.
I will say that my dr. added Lialda in addition to Budesonide once it was clear I was still struggling. I'm not sure if you're going to get much benefit from Mesalamine alone? But you never know!
Hope that helps!
Lisa
Re: Lymphocytic colitis
Hi Miley,Miley wrote:I am a newbie on this site. I was diagnosed with lymphocytic colitis 2 months ago and it has been a nightmare. The doctor put me on budesonide right away but the condition got worse. He than put me on 8 Pepto Bismal tablets a day which didn't work either. He now wants to put me on mesalamine but I read it has so many side effects so I am nervous to take it. Has anyone tried it and found it helpful? I have cut out gluten and lactose but I still have eggs once in awhile they don't seem to bother me. I have lost 6 lbs since I was diagnosed because I am constantly in the bathroom. I have read a lot of the posts on this site and I know that I am not alone and I feel it is very helpful. I would appreciate any suggestions from the group.
Thanks,
Miley
Sorry you had to find us but welcome to this group. The people here have a wealth of knowledge regarding diet and medications, etc. I was diagnosed with LC in December 2014 and was having Explosive D. 10-15 times a day. I found that budesonide took at least 2 weeks but was a godsend for me in decreasing my symptoms until my diet was all set. How long were you prescribed the budesonide? I know numerous people on this forum have had success with it.
You will find that diet is the key to getting remission. I am now in remission and have been for close to 2.5 years with just diet changes alone. It can be challenging.
Hi Cathy,
Thanks so much for your reply. Everyone has been extreme helpful and I am so grateful I found this site. In answer to your question in regards to budesonide I took it close to 2 weeks and I wound up with severe d more than usually right after I took it. The doctor said i was only the 2nd person that had that reaction. I wish it worked for me because a lot of people have had success with it. I am going to look into the Enterolab testing to see what intolerances I do have. I am so glad to hear you have been in remission for 2.5 years that gives me hope. Once I find out what the proper diet is I will stick to it. Nothing is worth feeling this way. I really appreciate your suggestions. I hope you continue to be in remission and enjoy the freedom from this horrible illness.
Miley
Thanks so much for your reply. Everyone has been extreme helpful and I am so grateful I found this site. In answer to your question in regards to budesonide I took it close to 2 weeks and I wound up with severe d more than usually right after I took it. The doctor said i was only the 2nd person that had that reaction. I wish it worked for me because a lot of people have had success with it. I am going to look into the Enterolab testing to see what intolerances I do have. I am so glad to hear you have been in remission for 2.5 years that gives me hope. Once I find out what the proper diet is I will stick to it. Nothing is worth feeling this way. I really appreciate your suggestions. I hope you continue to be in remission and enjoy the freedom from this horrible illness.
Miley