hi, i'm new to this forum and had a couple specific questions.
i've been diagnosed with lymphocitic colitis after having a hysterectomy and ovaries removed last november. right after the surgery i had watery diarrhea and a colonoscopy in january showed the colitis. I did an 8-week course of Endocort which did improve my stool but I still have 1-3 bowel movements every morning. I'm trying now to get gluten out of my diet and my symptoms have improved a little, however i still feel terrible every morning with flu-like symptoms, but am usually better by noon. In this time i've lost 25 pounds and i have some depression and anxiety.
My questions:
1) Is it typical to have morning bouts of diarrhea and accompanying flu-like symptoms and heart racing -- all in the morning only with improvement during the day?
2) I feel a lot of tightness across my abdomen; is this typical?
3) I feel extreme hunger and need to eat every 3 hours. I've been eating a bland diet to control the diarrhea -- white rice, potatoes, etc. Is this causing me to experience hypoglycemia?
4) For the depression my doctor is suggesting we try tricyclides; i am worried about putting even more drugs into my bad digestive system. has anyone had any good or bad experiences with tricyclides?
5) Are there any specific lymphocitic colitis diets that people have developed, or do you just stay away from specific allergens and wait for your system to improve?
i've really appreciated reading the forums and feeling the support here. i learned from these forums about dr. fine and am awaiting test results from his labs. thanks for all the advice and help.
cristi
New to forum -- questions about everything
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
1. Yes morning sickness (w/o being pregnant... I am a guy and I say I have morning sickness quite often..ha) is normal with colitis. It is good things are better by noon.
2. Tightness could be bloating which again is normal. Try some Gas X caps or Phyzyme (sp?).
3. I tested low for sugar in my blood. That could account for some of your nausea and morning sickness because you havent eaten lately. Your body is expelling food rapidly and might not be absorbing enough. It is good you are eating every 3 hours as that helps to eat small frequent meals. Be careful of rice... packaged rice might contain gluten so if you arent sure call the manufacturer.
4. I use wellbutrin. I would ask for something like that as it has little side effects and would help with the mind gut connection.
5. A lot of us have used Dr Fine's Enterolab tests to test for intolerances. You can find out more information by going to www.enterolab.com and looking for related threads on this forum. I personally am intolerant to gluten and all dairy. Others are intolerant of soy, eggs, yeast, rice, corn. The tests really help you see what is going on. Your regular Dr might dismiss the topic (there is another thread on that as well) so dont be surprised if you as your Dr about it.
Digestive enzymes and probiotic might help you out some as well. I use Natrol Digestive support (rather inexpensive) and VSL#3 (very expensive probiotic). But look into iFlora as it doesnt contain gluten and other allgrins as well as culturelle.
Hope this helps a bit.
2. Tightness could be bloating which again is normal. Try some Gas X caps or Phyzyme (sp?).
3. I tested low for sugar in my blood. That could account for some of your nausea and morning sickness because you havent eaten lately. Your body is expelling food rapidly and might not be absorbing enough. It is good you are eating every 3 hours as that helps to eat small frequent meals. Be careful of rice... packaged rice might contain gluten so if you arent sure call the manufacturer.
4. I use wellbutrin. I would ask for something like that as it has little side effects and would help with the mind gut connection.
5. A lot of us have used Dr Fine's Enterolab tests to test for intolerances. You can find out more information by going to www.enterolab.com and looking for related threads on this forum. I personally am intolerant to gluten and all dairy. Others are intolerant of soy, eggs, yeast, rice, corn. The tests really help you see what is going on. Your regular Dr might dismiss the topic (there is another thread on that as well) so dont be surprised if you as your Dr about it.
Digestive enzymes and probiotic might help you out some as well. I use Natrol Digestive support (rather inexpensive) and VSL#3 (very expensive probiotic). But look into iFlora as it doesnt contain gluten and other allgrins as well as culturelle.
Hope this helps a bit.
Dr Fine test shows positive for gluten and casien but negative for soy, eggs, and yeast
Maybe its UC maybe its MC? Who knows at this point, but at least I know my intollerances now... so heres to the road to healing!
Maybe its UC maybe its MC? Who knows at this point, but at least I know my intollerances now... so heres to the road to healing!
are you on any meds right now? Asacol, Pentasa, Colazal to help with the inflammation. Often times when finding the right diet for you many can control the disease w/o meds.
Dr Fine test shows positive for gluten and casien but negative for soy, eggs, and yeast
Maybe its UC maybe its MC? Who knows at this point, but at least I know my intollerances now... so heres to the road to healing!
Maybe its UC maybe its MC? Who knows at this point, but at least I know my intollerances now... so heres to the road to healing!
Hi Cristi and 
I have Collagenous Colitis and was dx'd in January 2003. I tried the Pepto treatment, no help. I had success with Asacol, but then failure after some time. I had some success with Entocort, but then failure after some time. I tried the gluten free diet, but not for long as I personally found it too difficult to diet in any way, and still do. I avoid foods that make me gassy, though.
We have all found that this disease affects us all differently and that you have to find the best solution for you. You'll get lots of personal experience and advice here, welcome to the road well traveled.
I'll answer your questions in my experience:
1. morning is the worst time for d to strike me, but it can also be right after an evening meal, so depending on how bad the flare up is no improvement during the day.
2. I feel pain in my abdomen, especially when gassy.
3. I never feel extreme hunger. I don't know about hypoglycemia.
4. I take nothing for depression.
5. many people opt for a gluten free diet.
I'm sure you'll get much better, and more detailed, answers. There's my 2 cents for what it's worth.
Again, welcome aboard. Don't be shy to ask anything - this is a wonderful group.
Hugs
Peggy
I have Collagenous Colitis and was dx'd in January 2003. I tried the Pepto treatment, no help. I had success with Asacol, but then failure after some time. I had some success with Entocort, but then failure after some time. I tried the gluten free diet, but not for long as I personally found it too difficult to diet in any way, and still do. I avoid foods that make me gassy, though.
We have all found that this disease affects us all differently and that you have to find the best solution for you. You'll get lots of personal experience and advice here, welcome to the road well traveled.
I'll answer your questions in my experience:
1. morning is the worst time for d to strike me, but it can also be right after an evening meal, so depending on how bad the flare up is no improvement during the day.
2. I feel pain in my abdomen, especially when gassy.
3. I never feel extreme hunger. I don't know about hypoglycemia.
4. I take nothing for depression.
5. many people opt for a gluten free diet.
I'm sure you'll get much better, and more detailed, answers. There's my 2 cents for what it's worth.
Again, welcome aboard. Don't be shy to ask anything - this is a wonderful group.
Hugs
Peggy
thanks for the information.
right now i'm taking 1/4 clonazepam in the morning to help with my anxiety. then i take a .5mg lorazepam at night to help me sleep. i just started taking some bio identical estrogen i got from my naturopath. i ve tried to find out if any of these has gluten in them and i dont think they do.....but im not sure about dairy.
well, its interesting that others have the symptoms mostly in the morning. my doctor seems to think that is really strange.
so when people stay on the gluten free diet and eliminate other things they are allergic to....what is the typical time it takes for their stools to go back to normal....or do they ever get completely normal. also, do the flu like symptooms dissappear when the stools get normal?
thanks so much for any information,
cristi
right now i'm taking 1/4 clonazepam in the morning to help with my anxiety. then i take a .5mg lorazepam at night to help me sleep. i just started taking some bio identical estrogen i got from my naturopath. i ve tried to find out if any of these has gluten in them and i dont think they do.....but im not sure about dairy.
well, its interesting that others have the symptoms mostly in the morning. my doctor seems to think that is really strange.
so when people stay on the gluten free diet and eliminate other things they are allergic to....what is the typical time it takes for their stools to go back to normal....or do they ever get completely normal. also, do the flu like symptooms dissappear when the stools get normal?
thanks so much for any information,
cristi
Hi Cristi,
Welcome to our online family. I'm sorry to read about your symptoms, but glad that you found us.
It's a shame that your doctor didn't allow you to continue on a maintenance dose of Entocort, since you were already taking it anyway. It might have made life easier for you during the time it takes for the GF diet to kick in.
Just out of curiosity, did your doctor recommend the GF diet, or did you decide to do that on your own, (like many of us here).
To addresss some of your questions, here's my two cents worth: Yes, many/most of us are able to find a solution that allows us to eliminate the symptoms, and have normal BMs. We are able to pretty much lead normal lives, again.
Everyone is different, so it's difficult to say how long it will take for your gut to heal, and your symptoms to all resolve Once you find all your food intolerances, and cut them out of your diet, most of your symptoms will go away in a reasonably short period time. Gluten is the main thing, and it may take anywhere from a week or two, up to a year or more, after you cut it out of your diet, depending on how much damage your small intestine has acrued.
If you have other intolerances, (and most of us do), cutting them out will usually bring results in just a few days, since they usually do not cause such severe residual damage to your small intestine, the way that gluten so often does. Most of us are casein intolerant, which means that we have to avoid all sources of dairy products, (this is not the same as lactose intolerance--lactose is a sugar, and casein is a protein). As Andrew mentioned, some of us are also intolerant to corn, soy, (and other legumes, due to the lectins in them), yeast, citric acid, (even from natural citrus), and eggs, and a few other things.
It took me the better part of a year, before I was able to consistantly avoid feeling like I had been hit by a train, each morning, but that may have been because it took me a while to find my other intolerances. The mental fog is usually the last symptom to disappear, and often seems to take about a year, if I am correctly interpreting what others say. It certainly took over a year in my case.
The anxiety and sleep problems should improve also, as your symptoms resolve. Until you get your symptoms under control, bloating is to be expected. I couldn't button my jeans for days at a time, when I was having an active episode. Some days, I was actually afraid that I might bust a gut, if the pressure got any worse. Anti-gas products didn't help me at all.
Rice and potatoes shouldn't cause any hypoglycemia, and eating small meals at short intervals during the day is usually a good idea. Be aware though, that a lot of white rice is "enriched", and gluten is often used in the "enriching" process. I lived on meat and potatoes, and a little rice, for between two and three years, while my gut was healing.
I have no experience with tricyclides, but I do know that they are an older class of antidepressants, which block serotonin receptors in the brain. They have a reputation for causing more severe side-effects than some of the newer antidepressants. Depression is a common problem with MC, however, so you may need to address it, if, and/or when it is enough of a problem to justify treatment. Finding the right one to use is the difficult part, for most people.
I'm not aware of any diets specifically directed at LC, but several of our members have good results with the paleo diet. In the past, some people have tried the specific carbohydrate diet, but you have to be careful about some of the items, since it is not a GF diet.
I hope that you can soon find the key to relieve your symptoms, so that you can get your life back. I have noticed that those who actively seek the answers to their problems, find the solutions that they are looking for, so I have no doubt that you will soon be feeling much better,
Again, welcome to our group.
Wayne (aka Tex)
Welcome to our online family. I'm sorry to read about your symptoms, but glad that you found us.
It's a shame that your doctor didn't allow you to continue on a maintenance dose of Entocort, since you were already taking it anyway. It might have made life easier for you during the time it takes for the GF diet to kick in.
Just out of curiosity, did your doctor recommend the GF diet, or did you decide to do that on your own, (like many of us here).
To addresss some of your questions, here's my two cents worth: Yes, many/most of us are able to find a solution that allows us to eliminate the symptoms, and have normal BMs. We are able to pretty much lead normal lives, again.
Everyone is different, so it's difficult to say how long it will take for your gut to heal, and your symptoms to all resolve Once you find all your food intolerances, and cut them out of your diet, most of your symptoms will go away in a reasonably short period time. Gluten is the main thing, and it may take anywhere from a week or two, up to a year or more, after you cut it out of your diet, depending on how much damage your small intestine has acrued.
If you have other intolerances, (and most of us do), cutting them out will usually bring results in just a few days, since they usually do not cause such severe residual damage to your small intestine, the way that gluten so often does. Most of us are casein intolerant, which means that we have to avoid all sources of dairy products, (this is not the same as lactose intolerance--lactose is a sugar, and casein is a protein). As Andrew mentioned, some of us are also intolerant to corn, soy, (and other legumes, due to the lectins in them), yeast, citric acid, (even from natural citrus), and eggs, and a few other things.
It took me the better part of a year, before I was able to consistantly avoid feeling like I had been hit by a train, each morning, but that may have been because it took me a while to find my other intolerances. The mental fog is usually the last symptom to disappear, and often seems to take about a year, if I am correctly interpreting what others say. It certainly took over a year in my case.
The anxiety and sleep problems should improve also, as your symptoms resolve. Until you get your symptoms under control, bloating is to be expected. I couldn't button my jeans for days at a time, when I was having an active episode. Some days, I was actually afraid that I might bust a gut, if the pressure got any worse. Anti-gas products didn't help me at all.
Rice and potatoes shouldn't cause any hypoglycemia, and eating small meals at short intervals during the day is usually a good idea. Be aware though, that a lot of white rice is "enriched", and gluten is often used in the "enriching" process. I lived on meat and potatoes, and a little rice, for between two and three years, while my gut was healing.
I have no experience with tricyclides, but I do know that they are an older class of antidepressants, which block serotonin receptors in the brain. They have a reputation for causing more severe side-effects than some of the newer antidepressants. Depression is a common problem with MC, however, so you may need to address it, if, and/or when it is enough of a problem to justify treatment. Finding the right one to use is the difficult part, for most people.
I'm not aware of any diets specifically directed at LC, but several of our members have good results with the paleo diet. In the past, some people have tried the specific carbohydrate diet, but you have to be careful about some of the items, since it is not a GF diet.
I hope that you can soon find the key to relieve your symptoms, so that you can get your life back. I have noticed that those who actively seek the answers to their problems, find the solutions that they are looking for, so I have no doubt that you will soon be feeling much better,
Again, welcome to our group.
Wayne (aka 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.
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annie oakley
- King Penguin
- Posts: 3859
- Joined: Fri May 13, 2011 5:56 pm
Welcome to our Home. I couldn't say any better than what everyone else has already. Hugs Omathanks tex,
it helps to know that there is a possibility that these symptoms will go away sometime. i' ve only been dealing with this for 6 months,but it seems like an eternity. i think my coping skills are really bad now because of having my ovaries removed.
so i have some diet questions. i eat the same thing everyday...chicken, cod, white rice, potatoes,the two same fruits and two vegetables, olive oil, and flax seed oil. i dont have explosive watery episodes but i do have multiple bowel movements that are very soft. should i start introducing new foods. should i start switching more to brown rice and uncooked fruits and vegetables. or do i wait until my stools are firmer. also, baked goods that dont have gluten , eggs, soy, or yeast......are they safe to try yet.
im just so worried about my weight. i'm 5'4" tall and i've gone from 140 lbs. down to 112 lbs. im really trying to eat...even through the nausea, but i just can't get those stupid scales to go up.
thanks again. it's so nice to chat withpeople who have actually been through this,
cristi
it helps to know that there is a possibility that these symptoms will go away sometime. i' ve only been dealing with this for 6 months,but it seems like an eternity. i think my coping skills are really bad now because of having my ovaries removed.
so i have some diet questions. i eat the same thing everyday...chicken, cod, white rice, potatoes,the two same fruits and two vegetables, olive oil, and flax seed oil. i dont have explosive watery episodes but i do have multiple bowel movements that are very soft. should i start introducing new foods. should i start switching more to brown rice and uncooked fruits and vegetables. or do i wait until my stools are firmer. also, baked goods that dont have gluten , eggs, soy, or yeast......are they safe to try yet.
im just so worried about my weight. i'm 5'4" tall and i've gone from 140 lbs. down to 112 lbs. im really trying to eat...even through the nausea, but i just can't get those stupid scales to go up.
thanks again. it's so nice to chat withpeople who have actually been through this,
cristi
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kate_ce1995
- Rockhopper Penguin
- Posts: 1321
- Joined: Wed May 25, 2005 5:53 pm
- Location: Vermont
Hi Cristi,
I had a total hysterectomy in November too. But I developed MC about 5 years ago.
Are you on HRT? I had to do 6 months of lupron before my hyst, and that set off some wicked hypoglycemic episodes. It was awful! I still feel that way from time to time. It could be your body adjusting to new hormone levels (or lack thereof). Just make sure you have good protien based snacks with you.
Are you on pain meds at all for the hyst? My MC was trigger by NSAID use. Once I got things under control, I was able to use NSAIDs again. But I had to rotate my pain meds.
I'm gluten sensitive too.
Katy
I had a total hysterectomy in November too. But I developed MC about 5 years ago.
Are you on HRT? I had to do 6 months of lupron before my hyst, and that set off some wicked hypoglycemic episodes. It was awful! I still feel that way from time to time. It could be your body adjusting to new hormone levels (or lack thereof). Just make sure you have good protien based snacks with you.
Are you on pain meds at all for the hyst? My MC was trigger by NSAID use. Once I got things under control, I was able to use NSAIDs again. But I had to rotate my pain meds.
I'm gluten sensitive too.
Katy
Hi Katy,
i was on climara estogen patch for a while after my surgery. Then i had to go off in march for a second surgery. I just started taking a bio identical estrogen 12 days ago. It has a progesteron cream with it that i start in a couple of days. I'm hoping this will eventually help with my depression. however, I'm so sad and anxious most of the time that I should probably consider taking an antidepressant. i just get worried that it will make my colitis worse.
i was on pain meds including NSAID. I've been off those since my diagnosis in January.
I'm hoping that diet will help. I really don't care what i have to give up food wise.....i just want to feel better
thanks for listening,
Cristi
i was on climara estogen patch for a while after my surgery. Then i had to go off in march for a second surgery. I just started taking a bio identical estrogen 12 days ago. It has a progesteron cream with it that i start in a couple of days. I'm hoping this will eventually help with my depression. however, I'm so sad and anxious most of the time that I should probably consider taking an antidepressant. i just get worried that it will make my colitis worse.
i was on pain meds including NSAID. I've been off those since my diagnosis in January.
I'm hoping that diet will help. I really don't care what i have to give up food wise.....i just want to feel better
thanks for listening,
Cristi
I would not try and uncooked fruits and high fiber fruits until you have been on the diet for a while and are feeling better on an everyday basis. What two fruits and veggies do you eat? You can probably introduce turkey, salmon and other fish, ground chicken and turkey to make patties (making that tonight).
Dr Fine test shows positive for gluten and casien but negative for soy, eggs, and yeast
Maybe its UC maybe its MC? Who knows at this point, but at least I know my intollerances now... so heres to the road to healing!
Maybe its UC maybe its MC? Who knows at this point, but at least I know my intollerances now... so heres to the road to healing!
Hi,
i eat bananas and blueberries and applesause. The veggies I eat are cooked carrots and asparagus. The ground patties sound good. I'll try those. what do you think about introducing brown rice along with the white. Also,do you think increasing the olive and flax seed oil would be okay?
THanks for the input,
Cristi
i eat bananas and blueberries and applesause. The veggies I eat are cooked carrots and asparagus. The ground patties sound good. I'll try those. what do you think about introducing brown rice along with the white. Also,do you think increasing the olive and flax seed oil would be okay?
THanks for the input,
Cristi
Hi Cristi and welcome to our family! You'll find so much information by reading all of the compiled information on this site. Not only will it give you the information you are requiring to make you feel better but the friendships and comfort will go a long way towards healing also.
I found that nausea first thing in the morning was a "normal" way of life for me for quite some time. It was normally brought on by eating something that I shouldn't have. In the days of flares that had my body out of control, immediate trips to the bathroom brought on terrible bouts of nausea. My doctor found that odd also. It seemed the more urgent the bowl movement was, the worse the nausea became.
I also had a hysterectomy in my early 20's (I'm soon to be 46) but did not take HRT's. When looking back, I think the colitis symptoms began around that time. I can tell you that the hormone imbalance/regulation period can bring on depression and also panic attacks in some women.
I just wanted to let you know that with diet and/or medication your symptoms can get better and in some cases go away completely. You are ALWAYS welcome to come here and ask ANY question you need answered. NOTHING is too gross or silly. I don't know where any of us would be now if it weren't for the feedback and comfort we have found here. Sometimes we just come here to voice our feelings and vent! Makes you feel better!
For what it's worth, the feelings of depression are normal, not only because of the hormone imbalance but because colitis can be a depressing disease until you are able to bring the symptoms under control. You are not alone and we've all "been there, done that".
Again, there is a wealth of information to be found here. Pull up a chair and read, read, read! Ask away - we're here! Everyone is different and reacts to different forms of treatment. What works for one might not work for another but we are still here to encourage and help any way we can!
All my best,
Mars
I found that nausea first thing in the morning was a "normal" way of life for me for quite some time. It was normally brought on by eating something that I shouldn't have. In the days of flares that had my body out of control, immediate trips to the bathroom brought on terrible bouts of nausea. My doctor found that odd also. It seemed the more urgent the bowl movement was, the worse the nausea became.
I also had a hysterectomy in my early 20's (I'm soon to be 46) but did not take HRT's. When looking back, I think the colitis symptoms began around that time. I can tell you that the hormone imbalance/regulation period can bring on depression and also panic attacks in some women.
I just wanted to let you know that with diet and/or medication your symptoms can get better and in some cases go away completely. You are ALWAYS welcome to come here and ask ANY question you need answered. NOTHING is too gross or silly. I don't know where any of us would be now if it weren't for the feedback and comfort we have found here. Sometimes we just come here to voice our feelings and vent! Makes you feel better!
For what it's worth, the feelings of depression are normal, not only because of the hormone imbalance but because colitis can be a depressing disease until you are able to bring the symptoms under control. You are not alone and we've all "been there, done that".
Again, there is a wealth of information to be found here. Pull up a chair and read, read, read! Ask away - we're here! Everyone is different and reacts to different forms of treatment. What works for one might not work for another but we are still here to encourage and help any way we can!
All my best,
Mars
"Let us rise up and be thankful, for if we didn't learn a lot today, at least we learned a little, and if we didn't learn a little, at least we didn't get sick, and if we got sick, at least we didn't die; so, let us all be thankful." -- Buddha
Hi Cristi! Welcome to the group!
I have CC and was diagnosed several years ago. I tried several things....I am alergic to Asacol, but found that Entocort works well for me. I am down to 3 pills/week. I take one pill MWF. I tried going down to 2, but the D came back. I am too lazy and I love food too much to go GF, I know that sounds very silly.
Hope you find what works for you....you will have lots of support from all of us. Take care....Jill
I have CC and was diagnosed several years ago. I tried several things....I am alergic to Asacol, but found that Entocort works well for me. I am down to 3 pills/week. I take one pill MWF. I tried going down to 2, but the D came back. I am too lazy and I love food too much to go GF, I know that sounds very silly.
Hope you find what works for you....you will have lots of support from all of us. Take care....Jill