Perhaps I am more emotional than most, but I have recently been diagnosed with LC and it has been an emotional ride getting there. I didn't see a doctor for a year and a half because I was too embarrassed, well, and didn't really think they could fix me. I went to a physician a year and a half ago, when things started to really pose a problem, and the lady made me feel mortified, said they'd give me an antibiotic, and when I questioned her, flippantly said, "Well, we could take a stool sample." As if that'd be insane. Because I was already embarrassed, I tucked tail and left. The antibiotic didn't help, and if anything, made things worse, but I never went back ... until, well, desperation took over, I guess.
Initially, I didn't understand what was going on and thought I could fix it. I didn't even tell my husband for some time, but instead of fixing things, my efforts only made things worse. So I swallowed my pride and went to the doctor, then another doctor ... I'm sure you know the drill. I think one of the reasons I feel so teary is I can read posts from you all talking so openly of something I have been embarrassed about for so long.
I'm not sure how I feel about my diagnosis. I'm glad to have answers, but I worry about what this means. I guess I was hoping I had a bacterial infection or something. Honestly, I still am finding it hard to wrap my head around this, thinking maybe the doctors are wrong and missed something. My GI hasn't been too communicative about this. Simply told me to take two Peptos a day for two weeks, then we'd go from there.
But I am learning by reading posts here. I'm not sure if I'm sensitive to gluten or not as I've been off processed foods and stuff for quite some time, but it doesn't seem to help. But as I read, perhaps there are hidden wheat products in foods I have been eating. I thought I was doing good replacing milk with soy, now realize that might not have been good. So today I bought coconut milk which I was told helped heal the gut. We'll see.
I would love to know how you guys started figuring out what foods caused you problems. Honestly, at this point, a feeding tube seems so much easier!
Has anyone tried going on all liquid diets? At least for a time?
Introducing myself
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Jennifer,
Oh dear you have made yourself suffer way too long. You've found the right place and the right people to help you through this. Start with Gluten Free first and continue from there. I was fortunate so far......only had to eliminate gluten but many many more of these folks are at much more diet extremes. For heaven sakes........don't be embarrassed here on this forum. I was for a long time too and found myself lightening up a lot. In fact you'll see posts from granny and Lesley sometimes that make you laugh at the things they put in words. It's a lifesaver for you and you need to continue to laugh through this. Tex is the resident expert here and his advice is invaluable. Please get his book shown on the top right hand corner of the web page.
Welcome and feel free to ask away to these folks.
Oh dear you have made yourself suffer way too long. You've found the right place and the right people to help you through this. Start with Gluten Free first and continue from there. I was fortunate so far......only had to eliminate gluten but many many more of these folks are at much more diet extremes. For heaven sakes........don't be embarrassed here on this forum. I was for a long time too and found myself lightening up a lot. In fact you'll see posts from granny and Lesley sometimes that make you laugh at the things they put in words. It's a lifesaver for you and you need to continue to laugh through this. Tex is the resident expert here and his advice is invaluable. Please get his book shown on the top right hand corner of the web page.
Welcome and feel free to ask away to these folks.
Cathy
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jessica329
- Adélie Penguin
- Posts: 214
- Joined: Thu Oct 11, 2012 6:47 pm
- Location: CT
Welcome! Don't ever feel embarrassed. My method so far is if a food either made my stomach hurt, I pooped out mush for days or both, then I cut it out of my diet. Bread was a BIG issue so I figured, hey, just cut out the gluten and my tummy (and bottom) have been happier since. I eat my MIL's pasta on Thursday nights but I know it's coming to an end soon (gives me gas and bloat). As for an all-liquid, IMO, I would never because I don't think it's healthy, even when I was pooping back out what I ate. My go-to meal is kitchen basics veggie or chicken stock with basmati white rice, overly soft cooked veggies and chicken (not always though on the chicken). I have a 6 week Entocort follow-up with my doctor on the 6th and will try to get him on board with supporting the enterolab testing for food intolerances to try to get my insurance to cover it, but will respect his opinion because he's been great!
Jessica
Lymphocytic colitis August 2012
Lymphocytic colitis August 2012
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Christine.
- Gentoo Penguin
- Posts: 260
- Joined: Mon Feb 20, 2012 1:15 pm
Jennifer
Welcome to the best and most extensive source of information for your LC. JESSICA's advice for chicken, broth, rice and soft veggies is a good one. Until you know what foods trigger your D and other symptoms keep it simple and fresh. If that doesn't do the trick you may have to do further food elimination or possibly try meds.
I am one that was able to control the symptoms with diet alone but not until I eliminated soy, eggs gluten and dairy. I certainly had a period of mourning over hunks of sourdough bread and sharp bleu cheese but one year later I don't feel very deprived and I'm finding I can add back small amounts of food that bothered me 6 months ago.
All good wishes for your success!
Christine
Welcome to the best and most extensive source of information for your LC. JESSICA's advice for chicken, broth, rice and soft veggies is a good one. Until you know what foods trigger your D and other symptoms keep it simple and fresh. If that doesn't do the trick you may have to do further food elimination or possibly try meds.
I am one that was able to control the symptoms with diet alone but not until I eliminated soy, eggs gluten and dairy. I certainly had a period of mourning over hunks of sourdough bread and sharp bleu cheese but one year later I don't feel very deprived and I'm finding I can add back small amounts of food that bothered me 6 months ago.
All good wishes for your success!
Christine
Hi Jennifer,
Welcome to our internet family. We consider ourselves a family, because no one truly understands this disease unless they have it. And all of us here definitely understand it.
I was embarrassed to go to the doctor about my symptoms, too. And after the GI specialist put me through every test he could think of, and he still couldn't find anything wrong with me, (because he didn't take any biopsies), my embarrassment turned to hopelessness. But fate was kind to me. I started researching and keeping a food journal where I listed everything I ate, how I felt, and what my bowel movements were like. Eventually, it dawned on me that I was probably gluten-sensitive, and after cutting gluten out of my diet, and studying my journal regularly, I figured out my other food sensitivities. It took about a year and a half on a very limited diet, but eventually my gut healed and I felt better than I had felt in over 20 years.
I used to be very modest, also, but something about this disease tends to destroy modesty. Maybe it's the loud gurgling sounds that come from our intestines, that can be heard by anyone across the room, or maybe it's the unbelievably bad odor that fills the bathroom every time we use it, or maybe it's the public "accidents". Whatever it is, sooner or later, we find ourselves ratcheting down our modesty a notch or two as we learn to deal with the disease.
It helps to talk about it, because the only way we can learn how to control our symptoms, when our doctors are no help, is by comparing notes with others here, to help figure out what works and what doesn't. We're all different, and what works for one, doesn't necessarily work for everyone, but we can narrow the options by seeing what works for others, and we can figure out a treatment program that will work for us, individually.
Again, welcome aboard, and please feel free to ask anything.
Tex
Welcome to our internet family. We consider ourselves a family, because no one truly understands this disease unless they have it. And all of us here definitely understand it.
I was embarrassed to go to the doctor about my symptoms, too. And after the GI specialist put me through every test he could think of, and he still couldn't find anything wrong with me, (because he didn't take any biopsies), my embarrassment turned to hopelessness. But fate was kind to me. I started researching and keeping a food journal where I listed everything I ate, how I felt, and what my bowel movements were like. Eventually, it dawned on me that I was probably gluten-sensitive, and after cutting gluten out of my diet, and studying my journal regularly, I figured out my other food sensitivities. It took about a year and a half on a very limited diet, but eventually my gut healed and I felt better than I had felt in over 20 years.
I used to be very modest, also, but something about this disease tends to destroy modesty. Maybe it's the loud gurgling sounds that come from our intestines, that can be heard by anyone across the room, or maybe it's the unbelievably bad odor that fills the bathroom every time we use it, or maybe it's the public "accidents". Whatever it is, sooner or later, we find ourselves ratcheting down our modesty a notch or two as we learn to deal with the disease.
It helps to talk about it, because the only way we can learn how to control our symptoms, when our doctors are no help, is by comparing notes with others here, to help figure out what works and what doesn't. We're all different, and what works for one, doesn't necessarily work for everyone, but we can narrow the options by seeing what works for others, and we can figure out a treatment program that will work for us, individually.
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.
You are definitely in the right place! The support from this group of people is just amazing. I also was one to hide my symtoms. I would starve on roadtrips..........just doing liquids until we reached a solid destination with a bathroom. Once I was able to disclose that I had an actual disease....it got better. Some people actually understand!
Take care and you are in my thoughts.
Hugs
:)
Take care and you are in my thoughts.
Hugs
:)
Dear Jennifer,
Welcome from Hong Kong.
What is great about this place is there is NO embarrassment. (Actually the only people who should be embarrassed about this disease are those in the medical professional who are not capable of giving us the right advice).
Actually in a strange way I have grown to feel proud of dealing with MC and proud of the wonderful Potty People. The people bring love and knowledge and this, in turn, brings hope and confidence.
Just to make a quick comment on social embarrassment, when people ask me what will happen if I eat gluten or another no no food I do not get too specific......... I usually say:
"it causes inflammation in my gut and that in turn causes... I will not say, but you can guess what".
They usually know what I mean and change the subject.
Once you have figured out the foods you cannot eat you will start getting better.
Wishing all success in your journey to remission. All the best, Ant
Welcome from Hong Kong.
What is great about this place is there is NO embarrassment. (Actually the only people who should be embarrassed about this disease are those in the medical professional who are not capable of giving us the right advice).
Actually in a strange way I have grown to feel proud of dealing with MC and proud of the wonderful Potty People. The people bring love and knowledge and this, in turn, brings hope and confidence.
Just to make a quick comment on social embarrassment, when people ask me what will happen if I eat gluten or another no no food I do not get too specific......... I usually say:
"it causes inflammation in my gut and that in turn causes... I will not say, but you can guess what".
They usually know what I mean and change the subject.
Once you have figured out the foods you cannot eat you will start getting better.
Wishing all success in your journey to remission. All the best, Ant
----------------------------------------
"Softly, softly catchee monkey".....
"Softly, softly catchee monkey".....
Dear Jennifer,
Welcome to the Potty People. You will get so much information and support and encouragement here. It's a great group of people.
Like you, after an initial visit to the doctor, I kind of lost hope that they could help. My PCP was actually very nice--she did a stool sample, gave me antibiotics, gave me a list of the 8 most common allergens, and suggested a colonoscopy, but when the stool sample came back negative, and the antibiotics helped for only the week that I took them, I figured that was all she could do. As for the list of allergens, I thought that was ridiculous; I got sick over Memorial Day weekend, and no way could I have developed food allergies overnight.
So I went on my unhappy way. I knew I should get a colonoscopy on general principles, but my insurance had a very high deductible that year, so I waited. I ended up keeping a food journal for 10 months, poring over it to see if I had eaten peanuts or popcorn or something "seedy" that might be causing irritation. (My mom had trouble with seedy things, that's why I was looking there.) But unlike Tex, I was not able to figure out what was causing the D. I even tried going gluten-free, but I didn't understand what gluten was in, so I gave up the obvious wheat sources, but I was eating rye crisp instead, not knowing that rye has gluten.
After 18 months, I got the colonoscopy. I went to the initial GI visit armed with my 10 months of food journal, which he declined to look at, but at least it told him that I had been paying attention. He suspected MC right away, and that was confirmed. I have LC. He said that MC is not affected by diet (yay!) but it is incurable (boo!) He gave me a prescription for Entocort, as well as samples to get me started. It's a good thing he gave me samples, because I would never have bought it, at $600 a month just for my copay. But the samples showed me that it worked, so I asked for more samples, then ordered from India.
It was wonderful! Within a week, I was normal again. The doctor warned me that D would return when I went off the Entocort, and that was true. In 3 weeks, the D was back, but those three months on Entocort showed me what life was like without D, and I wanted that. I hadn't realized how churny my stomach was with the MC symptoms, just always roiling around, even if I wasn't having D.
When I complained about the cost of Entocort, my doctor reminded me that I have an incurable disease, and this is the treatment. However, he did mention that one of his patients controlled her symptoms by eating 2 coconut macaroons a day. I don't like macaroons, but decided to try it. It wasn't as good as the Entocort, but it did help reduce the D.
That sent me on an internet search for coconut as a treatment for D, which eventually landed me on this site. At first I thought it was too unlikely to be believable. Why should I suddenly overnight become unable to eat stuff without having D? But the PP weren't pushing an agenda. They weren't trying to sell me anything. It was just a bunch of people telling what worked for them. So what did I have to lose to try it? Give up some food, or pay outrageous drug prices for a medicine that only suppressed the symptoms? No contest.
Welcome to the Potty People. You will get so much information and support and encouragement here. It's a great group of people.
Like you, after an initial visit to the doctor, I kind of lost hope that they could help. My PCP was actually very nice--she did a stool sample, gave me antibiotics, gave me a list of the 8 most common allergens, and suggested a colonoscopy, but when the stool sample came back negative, and the antibiotics helped for only the week that I took them, I figured that was all she could do. As for the list of allergens, I thought that was ridiculous; I got sick over Memorial Day weekend, and no way could I have developed food allergies overnight.
So I went on my unhappy way. I knew I should get a colonoscopy on general principles, but my insurance had a very high deductible that year, so I waited. I ended up keeping a food journal for 10 months, poring over it to see if I had eaten peanuts or popcorn or something "seedy" that might be causing irritation. (My mom had trouble with seedy things, that's why I was looking there.) But unlike Tex, I was not able to figure out what was causing the D. I even tried going gluten-free, but I didn't understand what gluten was in, so I gave up the obvious wheat sources, but I was eating rye crisp instead, not knowing that rye has gluten.
After 18 months, I got the colonoscopy. I went to the initial GI visit armed with my 10 months of food journal, which he declined to look at, but at least it told him that I had been paying attention. He suspected MC right away, and that was confirmed. I have LC. He said that MC is not affected by diet (yay!) but it is incurable (boo!) He gave me a prescription for Entocort, as well as samples to get me started. It's a good thing he gave me samples, because I would never have bought it, at $600 a month just for my copay. But the samples showed me that it worked, so I asked for more samples, then ordered from India.
It was wonderful! Within a week, I was normal again. The doctor warned me that D would return when I went off the Entocort, and that was true. In 3 weeks, the D was back, but those three months on Entocort showed me what life was like without D, and I wanted that. I hadn't realized how churny my stomach was with the MC symptoms, just always roiling around, even if I wasn't having D.
When I complained about the cost of Entocort, my doctor reminded me that I have an incurable disease, and this is the treatment. However, he did mention that one of his patients controlled her symptoms by eating 2 coconut macaroons a day. I don't like macaroons, but decided to try it. It wasn't as good as the Entocort, but it did help reduce the D.
That sent me on an internet search for coconut as a treatment for D, which eventually landed me on this site. At first I thought it was too unlikely to be believable. Why should I suddenly overnight become unable to eat stuff without having D? But the PP weren't pushing an agenda. They weren't trying to sell me anything. It was just a bunch of people telling what worked for them. So what did I have to lose to try it? Give up some food, or pay outrageous drug prices for a medicine that only suppressed the symptoms? No contest.
Martha
Jessica, thank you for the suggestions. Yesterday I tried overcooking my veggies and meat (turkey), but I ate an apple, which appears to not have been good. Of course, it's hard to know what's good or not as so far I'm not getting better. If anything, I am feeling worse. Perhaps that is normal? I've been on Pepto for three days. How long does the Pepto take to start binding things? Although I have had a blessing--a huge one for this Momma. I have a fifteen year old daughter, and for years, since she was two, we'd take long, leisure walks together. As you all know, walks are not always wise for those with LC. I think because of the Pepto, and maybe my rice and meat diet, the past two days I've been able to enjoy a 40 min. walk with her. The way back has been a bit ... angst filled, but one thing this illness is teaching me is what I value most. And that's time with my family.
Ant, I like your sense of humor. My daughter has started to joke a little about my condition--which attests to her beautiful heart. When she has to get somewhere but we're late because mom has to go to the potty, and she smiles, says, "That's okay," and makes a potty joke. I love her to pieces! Of course, on the way to school one day she wanted to know what she'd tell her teacher as to the reason she was late. "Uh, my mom had to go to the bathroom?"
Tex, I appreciate your candor. I suppose that's the only way to deal with this condition. It's not like we can hide it. lol.
Martha, if my food elimination and Pepto-taking efforts don't help, I'll have to ask my doc about that medication. Right now I feel so lousy, I'd be happy to do anything to feel even remotely better. But I am encouraged reading posts from you all who seem to be doing well.
I'm beginning to understand things that didn't make sense before and wonder if they are part of the LC. I used to run triathlons (sprints), and started getting joint pain. I rested, iced, weight trained, took supplements, etc. (My dad's a coach that believes our body can adapt to anything), but it only got worse. And I got really, really weak, almost over night. I went from being able to run 13 miles with relative ease to struggling to make it to three miles in the span of two months. Then a mile became troublesome due to pain, so I stopped altogether. I had minor bowel issues at that time, but I just attributed them to nerves and a low-carb, high-fiber diet. (I've always been very natural, eating home cooked stuff made from scratch, lots of fruits and veggies, low-fat.) But then we went to El Salvador on a mission trip, and from then on, it seemed I couldn't keep anything in my system.
One question for those taking Pepto Bismol--if two pills a day doesn't help can you up the dosage? Or does this just take time?
I think I'm going to spend the rest of the day perusing all your guys' posts. We've got a vacation coming up in spring I'd really love to enjoy.
Ant, I like your sense of humor. My daughter has started to joke a little about my condition--which attests to her beautiful heart. When she has to get somewhere but we're late because mom has to go to the potty, and she smiles, says, "That's okay," and makes a potty joke. I love her to pieces! Of course, on the way to school one day she wanted to know what she'd tell her teacher as to the reason she was late. "Uh, my mom had to go to the bathroom?"
Tex, I appreciate your candor. I suppose that's the only way to deal with this condition. It's not like we can hide it. lol.
Martha, if my food elimination and Pepto-taking efforts don't help, I'll have to ask my doc about that medication. Right now I feel so lousy, I'd be happy to do anything to feel even remotely better. But I am encouraged reading posts from you all who seem to be doing well.
I'm beginning to understand things that didn't make sense before and wonder if they are part of the LC. I used to run triathlons (sprints), and started getting joint pain. I rested, iced, weight trained, took supplements, etc. (My dad's a coach that believes our body can adapt to anything), but it only got worse. And I got really, really weak, almost over night. I went from being able to run 13 miles with relative ease to struggling to make it to three miles in the span of two months. Then a mile became troublesome due to pain, so I stopped altogether. I had minor bowel issues at that time, but I just attributed them to nerves and a low-carb, high-fiber diet. (I've always been very natural, eating home cooked stuff made from scratch, lots of fruits and veggies, low-fat.) But then we went to El Salvador on a mission trip, and from then on, it seemed I couldn't keep anything in my system.
One question for those taking Pepto Bismol--if two pills a day doesn't help can you up the dosage? Or does this just take time?
I think I'm going to spend the rest of the day perusing all your guys' posts. We've got a vacation coming up in spring I'd really love to enjoy.
Hello and welcome to the forum!
In regards to the Pepto treatment, I'm on my 7th week of 6 pills a day (started out with 8/day, got constipated so went down to 7 pills for 5 weeks) and it works 100% for me. I think at the beginning 2 pills would not have cut it for me. The regimen seems to be 8 to 9 pills a day for 8 weeks while you tweak the diet even further. I had high antibodies for Gluten so went off that immediately and then figured out I needed to go Dairy free as well. I haven't tested the soy issue yet as I totally don't react to anything while on Pepto. Also, we cannot tolerate a lot of fiber while our guts are inflamed....the less fiber the better. And raw veggies and fruits are out as well for now.
Imodium AD has worked great for me as well but for some reason my doctor wanted me on the Pepto. But Imodium is my backup once I go off Pepto and if the D returns again. A lot of people take Entocort and it seems to work pretty darn good. I haven't taken it yet and am hoping I won't have to.
As for your doctor not communicating with you well in regards to the LC, it's because they don't have a great understanding of this nasty disease. My doctor simply gave me my diagnosis and prescribed Asacol (didn't work) and sent me on my way. From what I hear, a lot of them don't get that you need to change the diet in order for the gut to heal.
And, YES, I gave up the modesty months ago! It is what it is! I used to hate to say the word "diarrhea". Now I literally don't give a crap. lol!
You might want to up the dosage on the Pepto to see if that helps. It's my miracle drug but we all react differently to meds and it hasn't worked for some.
Good luck!
Terri
In regards to the Pepto treatment, I'm on my 7th week of 6 pills a day (started out with 8/day, got constipated so went down to 7 pills for 5 weeks) and it works 100% for me. I think at the beginning 2 pills would not have cut it for me. The regimen seems to be 8 to 9 pills a day for 8 weeks while you tweak the diet even further. I had high antibodies for Gluten so went off that immediately and then figured out I needed to go Dairy free as well. I haven't tested the soy issue yet as I totally don't react to anything while on Pepto. Also, we cannot tolerate a lot of fiber while our guts are inflamed....the less fiber the better. And raw veggies and fruits are out as well for now.
Imodium AD has worked great for me as well but for some reason my doctor wanted me on the Pepto. But Imodium is my backup once I go off Pepto and if the D returns again. A lot of people take Entocort and it seems to work pretty darn good. I haven't taken it yet and am hoping I won't have to.
As for your doctor not communicating with you well in regards to the LC, it's because they don't have a great understanding of this nasty disease. My doctor simply gave me my diagnosis and prescribed Asacol (didn't work) and sent me on my way. From what I hear, a lot of them don't get that you need to change the diet in order for the gut to heal.
And, YES, I gave up the modesty months ago! It is what it is! I used to hate to say the word "diarrhea". Now I literally don't give a crap. lol!
You might want to up the dosage on the Pepto to see if that helps. It's my miracle drug but we all react differently to meds and it hasn't worked for some.
Good luck!
Terri
Diagnosed with Lymphocytic Colitis in July, 2012 then with Celiac in November, 2012.
Jennifer,
Severe fatigue is one of the primary symptoms of MC, and a lot of doctors don't even seem to realize that it's connected. It takes a lot of energy for the body to fight the inflammation, and it takes adequate protein in the diet to heal the intestines. Your energy will return as your intestines heal.
Terri is right on target with her information about treating MC with Pepto Bismol. This is known as the Pepto treatment, (originally developed by Dr. Kenneth Fine, the founder of EnteroLab, about 12 or 14 years ago). In combination with diet changes, it will help to bring remission faster, for many people. Unfortunately, some of us are intolerant of Pepto, possibly because of dyes or some other ingredient, which can cause neurological symptoms, so not everyone can use it. Because of that, Dr. Fine no longer recommends the Pepto treatment as the first line of treatment, since the diet changes will usually bring remission without the bismuth subsalicylate, anyway. For those who can tolerate it, though, the Pepto treatment will usually bring remission much faster than by using diet changes alone.
If you fine tune your diet, with any luck at all, by the time your spring vacation rolls around, you will be fit as a fiddle.
Tex
Severe fatigue is one of the primary symptoms of MC, and a lot of doctors don't even seem to realize that it's connected. It takes a lot of energy for the body to fight the inflammation, and it takes adequate protein in the diet to heal the intestines. Your energy will return as your intestines heal.
Terri is right on target with her information about treating MC with Pepto Bismol. This is known as the Pepto treatment, (originally developed by Dr. Kenneth Fine, the founder of EnteroLab, about 12 or 14 years ago). In combination with diet changes, it will help to bring remission faster, for many people. Unfortunately, some of us are intolerant of Pepto, possibly because of dyes or some other ingredient, which can cause neurological symptoms, so not everyone can use it. Because of that, Dr. Fine no longer recommends the Pepto treatment as the first line of treatment, since the diet changes will usually bring remission without the bismuth subsalicylate, anyway. For those who can tolerate it, though, the Pepto treatment will usually bring remission much faster than by using diet changes alone.
If you fine tune your diet, with any luck at all, by the time your spring vacation rolls around, you will be fit as a fiddle.
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.
Thanks, Terri. I may have to up the dosage for a bit. :) And yes, I think you are right regarding the docs knowledge as he basically said the same thing. Which is why this forum is so valuable! (I ordered Tex's book and can't wait to learn how he has managed to find freedom!) And I may need to eat a bit of coconut. I've heard it's a wonder food.