I just feel like i can not go on. I am terrified of food. I am on entorcort and Lomitil now. I am trying to keep my job, I neeed it to accford food and medication. I still have a 8 year ols and 12 year old at home. I am sick and tired of being sick and tired and living in fear of D and food.My face is so itchy from the entorcort. It is hard to take care of others or live with the guilt of not being your best.I can no longer take care of myself. I hate all these diseases. I am glad I found this site, I know I am not alone. I need advice on how to get my life back.
Thank you
Help!Please!Newly Diagnosed
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
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SmallTownLady2U
- Little Blue Penguin
- Posts: 32
- Joined: Mon Mar 25, 2013 7:33 pm
Help!Please!Newly Diagnosed
Collagenous colitis and lymphocytic colitis March/ 2013
Celiac Disease November/2009
Celiac Disease November/2009
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Christine.
- Gentoo Penguin
- Posts: 260
- Joined: Mon Feb 20, 2012 1:15 pm
Dear Small Town Lady
Welcome. You are home here. Yes you will get your life back. Most all of us do. Even though most of us have doctors that don't tell us about the link between foods and active mc, all of us learn that with diet change alone or a combination of diet change and drugs we can be normal.
You don't say how long your disease has been active or how long you have taken Entocort but by eliminating all gluten, possibly dairy and soy and all raw veggies and fruits you my well feel better soon. Some of us can't eat a number of foods, others have had to eliminate only 1 or 2. But while you are so sick try backing off to nothing but chicken, rice and well cooked veggies. Also, check out some of the other discussions and check out the newbie section for sure. Good luck.
Christine
Welcome. You are home here. Yes you will get your life back. Most all of us do. Even though most of us have doctors that don't tell us about the link between foods and active mc, all of us learn that with diet change alone or a combination of diet change and drugs we can be normal.
You don't say how long your disease has been active or how long you have taken Entocort but by eliminating all gluten, possibly dairy and soy and all raw veggies and fruits you my well feel better soon. Some of us can't eat a number of foods, others have had to eliminate only 1 or 2. But while you are so sick try backing off to nothing but chicken, rice and well cooked veggies. Also, check out some of the other discussions and check out the newbie section for sure. Good luck.
Christine
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SmallTownLady2U
- Little Blue Penguin
- Posts: 32
- Joined: Mon Mar 25, 2013 7:33 pm
Thank you for your fast responce, I remember when being diagnosed with Celiacs Disease, it took a lot of work, education and changes. I got my life back! I still went to the bathroom atleast 4-6 times in the morning.I was not a blood positive but a scope positive.I am really scared being on the entocort as my daughter and husband have caught bad virusis this year. I am wondering if I should go off as i have only been on it a few days. I could try the pepto diet instead. I am so afraid of food I stopped eating and was still having D at least 12 times a day. Thank you for caring and responding. I really need advice....
Collagenous colitis and lymphocytic colitis March/ 2013
Celiac Disease November/2009
Celiac Disease November/2009
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SmallTownLady2U
- Little Blue Penguin
- Posts: 32
- Joined: Mon Mar 25, 2013 7:33 pm
I have been a celiac since 2009. I am dairy free. I have found that Chicken and rice I can keep in. I still have the D but can hold it for a few hours usually. I have no interest in cooking for my family as I now have a fear of food, my husband took over, however I will have to start again soon as he will be working long hours. I just got diagnossed with Colitis March.22'2013. I hope I am making sence, they have me so drugged.
Collagenous colitis and lymphocytic colitis March/ 2013
Celiac Disease November/2009
Celiac Disease November/2009
Please do not despair, nor be terrified of food. You will find a way to manage by reading and learning on this site. You will regain the control you feel you have lost. A couple of years ago, I was right where you are now. Today, life is good, and I feel like I am managing things in a way that works for me.
I totally hear you about being sick and tired of being sick and tired, and so will all the folks on this board. Every single one of us has been there.
Take a step back, breathe, and give yourself time to hear from others here. You will be amazed at what you learn from them.
I totally hear you about being sick and tired of being sick and tired, and so will all the folks on this board. Every single one of us has been there.
Take a step back, breathe, and give yourself time to hear from others here. You will be amazed at what you learn from them.
Suze
Hi,
Welcome to our internet family. It takes time for diet changes and medications to stop the diarrhea, but if you stick with the chicken soup and rice, your intestines should begin to heal. Not eating is not a solution for microscopic colitis, because it can cause secretory diarrhea, and if you have it, the diarrhea will continue whether you eat and drink anything or not. You have to drink enough water to avoid dehydration, and eat enough food to have some energy for healing.
You may be allergic to the Entocort, or the rash might be caused by something you are eating. If you believe that the Entocort is causing any swelling of your face, lips, tongue, or throat, or you are having difficulty breathing, stop taking it. If you are allergic to Entocort, the only remedy is to stop taking it.
On the other hand, if food is causing the itching, an over-the-counter antihistamine, such as Claritin, Zyrtec, or Allegra should help to reduce the itching. If you use Claritin, don't use the regular formulation, because it contains lactose — the Claritin RediTabs should be safe to use, because they don't contain lactose.
It takes a while for Entocort to lower your resistance, but it will eventually weaken your immune system, so you may be correct that Pepto-Bismol might be a safer treatment for you.
Again, welcome aboard, and please fool free to ask anything.
Tex
Welcome to our internet family. It takes time for diet changes and medications to stop the diarrhea, but if you stick with the chicken soup and rice, your intestines should begin to heal. Not eating is not a solution for microscopic colitis, because it can cause secretory diarrhea, and if you have it, the diarrhea will continue whether you eat and drink anything or not. You have to drink enough water to avoid dehydration, and eat enough food to have some energy for healing.
You may be allergic to the Entocort, or the rash might be caused by something you are eating. If you believe that the Entocort is causing any swelling of your face, lips, tongue, or throat, or you are having difficulty breathing, stop taking it. If you are allergic to Entocort, the only remedy is to stop taking it.
On the other hand, if food is causing the itching, an over-the-counter antihistamine, such as Claritin, Zyrtec, or Allegra should help to reduce the itching. If you use Claritin, don't use the regular formulation, because it contains lactose — the Claritin RediTabs should be safe to use, because they don't contain lactose.
It takes a while for Entocort to lower your resistance, but it will eventually weaken your immune system, so you may be correct that Pepto-Bismol might be a safer treatment for you.
Again, welcome aboard, and please fool 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.
Dear Small Town Lady,
"You will get your life back" is what this community, or as Tex rightly calls it family, is all about.
When first dx MC I think everyone finds they are in a complex maze and asks the question: is there a way out?
Well there are various ways out (each individual circumstance is a little bit different, but everyone can get out one way or another) and people here (with knowledge and the collective wisdom of thousands of experiences) will help you find your way out. Sure there will be some wrong turns along the way, but with time and patience you will get you life back.
Best wishes on your journey out of the maze and into remission, Ant
"You will get your life back" is what this community, or as Tex rightly calls it family, is all about.
When first dx MC I think everyone finds they are in a complex maze and asks the question: is there a way out?
Well there are various ways out (each individual circumstance is a little bit different, but everyone can get out one way or another) and people here (with knowledge and the collective wisdom of thousands of experiences) will help you find your way out. Sure there will be some wrong turns along the way, but with time and patience you will get you life back.
Best wishes on your journey out of the maze and into remission, Ant
----------------------------------------
"Softly, softly catchee monkey".....
"Softly, softly catchee monkey".....
I know how overwhelmed you feel. Last fall, I felt the same way. I went through months and months of nothing but despair, and never leaving my house.
The best thing I did was join this forum.
I learned about foods and how they were effecting my colitis.
It takes time to heal, stringent eating habits, and a personal calm.
You sound like your nerves are shot, too. Try some yoga, or some means of relaxation. It really helps.
What are all the drugs you are taking?
Linda
The best thing I did was join this forum.
I learned about foods and how they were effecting my colitis.
It takes time to heal, stringent eating habits, and a personal calm.
You sound like your nerves are shot, too. Try some yoga, or some means of relaxation. It really helps.
What are all the drugs you are taking?
Linda
Hi STL and 
As you have already heard, we have all walked in your moccasins and totally understand what you are going through. It is indeed no fun, but we are here to tell you that you CAN get better. Linda's suggestion of trying for "personal calm" is a good one, since stress is definitely detrimental to MC. Are you able to exercise? That's the best stress-buster for me. Also, if you can carve out 5-10 min. a day for yourself just to sit and RELAX, it helps. Some here have found yoga, massage, acupuncture, etc., to be helpful. Linda asked what drugs you are on? This is important, since some have been known to cause MC, not to mention the fact that many contain "fillers" made from gluten, dairy, soy, etc. You could be experiencing daily exposure to your sensitivities without realizing it.
I agree with Tex about the itching. Be sure to let your doc know. If it only occurred with Entocort, then that is a red flag. But if you had it while not on medication, it could be food related and I would agree with trying the histamine blockers that Tex suggested. I know they helped me tremendously.
You are so right about the fear that goes along with this disease........fear of not getting to the bathroom in time and having a public accident (Depends diapers can offer a little safety during bad times, and it always helps to have a change of clothing in your office or car), fear of losing your job/health insurance, fear of social/eating situations, etc. And then, since the gut is our "second brain" (it has almost as many nerve cells as the brain), it reacts on a cellular level to the chemicals that are put out by the body during periods of fear/anxiety and the result is MORE D. It's a viscious cycle. Try not to let your mind run off with worst-case scenarios - all it does is make the D worse - and, in reality, the worst case scenario that we imagine rarely occurs, and if it does, it is not as bad as what we imagined.
Hang in there and keep us posted.
Love,
Polly
As you have already heard, we have all walked in your moccasins and totally understand what you are going through. It is indeed no fun, but we are here to tell you that you CAN get better. Linda's suggestion of trying for "personal calm" is a good one, since stress is definitely detrimental to MC. Are you able to exercise? That's the best stress-buster for me. Also, if you can carve out 5-10 min. a day for yourself just to sit and RELAX, it helps. Some here have found yoga, massage, acupuncture, etc., to be helpful. Linda asked what drugs you are on? This is important, since some have been known to cause MC, not to mention the fact that many contain "fillers" made from gluten, dairy, soy, etc. You could be experiencing daily exposure to your sensitivities without realizing it.
I agree with Tex about the itching. Be sure to let your doc know. If it only occurred with Entocort, then that is a red flag. But if you had it while not on medication, it could be food related and I would agree with trying the histamine blockers that Tex suggested. I know they helped me tremendously.
You are so right about the fear that goes along with this disease........fear of not getting to the bathroom in time and having a public accident (Depends diapers can offer a little safety during bad times, and it always helps to have a change of clothing in your office or car), fear of losing your job/health insurance, fear of social/eating situations, etc. And then, since the gut is our "second brain" (it has almost as many nerve cells as the brain), it reacts on a cellular level to the chemicals that are put out by the body during periods of fear/anxiety and the result is MORE D. It's a viscious cycle. Try not to let your mind run off with worst-case scenarios - all it does is make the D worse - and, in reality, the worst case scenario that we imagine rarely occurs, and if it does, it is not as bad as what we imagined.
Hang in there and keep us posted.
Love,
Polly
Blessed are they who can laugh at themselves, for they shall never cease to be amused.
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mzh
- Rockhopper Penguin
- Posts: 615
- Joined: Fri Nov 12, 2010 8:03 pm
- Location: Upstate South Carolina
- Contact:
As one who suffered like you for 10 years and am now better for the last 3 months and on no meds except Betaine HCl for MC (knock on wood) here are a couple of suggestions.
Wear Depends or a heavy menstrual pad when you go out. You will quit worrying about messes unless you have such a large volume at once that this won't work for you.
Try the L-Glutamine regimen. That's one of the two things that turned me around. I worked my way up from 750 mg with each meal to a 3-4 gram a day dose. It took 9 months but it did work.
This counterintuitive but it turned me around, I take an acid supplement (the Betaine Hcl with pepsin) with every meal other than salads. (But you shouldn't be eating salads anyway.) It's easy to find out if you need it or not. All this is elsewhere on the site. Every time I tried to stop the Bet HCl, my diarrhea comes back. The docs all thought I had reflux and put me on omeprazole. Made my D worse. PM me if you want more info and can't find it via a search. Good luck - I know you will get better!
Wear Depends or a heavy menstrual pad when you go out. You will quit worrying about messes unless you have such a large volume at once that this won't work for you.
Try the L-Glutamine regimen. That's one of the two things that turned me around. I worked my way up from 750 mg with each meal to a 3-4 gram a day dose. It took 9 months but it did work.
This counterintuitive but it turned me around, I take an acid supplement (the Betaine Hcl with pepsin) with every meal other than salads. (But you shouldn't be eating salads anyway.) It's easy to find out if you need it or not. All this is elsewhere on the site. Every time I tried to stop the Bet HCl, my diarrhea comes back. The docs all thought I had reflux and put me on omeprazole. Made my D worse. PM me if you want more info and can't find it via a search. Good luck - I know you will get better!
Also have sleep apnea
Welcome Small Town Lady,
Your email brought back memories of just a few months ago. I felt so trapped by this disease and wanted to stop eating until I could figure out what I could eat, but that just doesn't work. I remember sitting and looking at the results of my colonoscopy biopsy and wondering what I was going to do. I actually told my husband that I wished some good fairy would come with food that I could eat and would tell me exactly what to eat for the rest of my life. Well, wishing, did not make it so, but this forum was a Godsend!
After I had been on Pepto Bismol for 15 days, my D stopped and now I am horribly constipated, but it is a whole lot easier to deal with than the D. I know that I am not in remission yet, but I have so much more hope than I had even two months ago and my life is much more the way it was before all of this started last May.
I do acupuncture, which has been extremely helpful, but also very expensive, and I am taking a Mindfulness Meditation class, which is invaluable in helping me with my stressors and listening to my body. I make bone broth every few days and even have some in the freezer for when I don't have a soup bone and need more broth. This is a website that tells you how to make it and why it is helpful to your healing gut. http://nourishedkitchen.com/bone-broth/
Just know that the loss of having to eat in a certain way and give up some of the foods you have dearly loved is a grief process and is scary. Allow yourself some time to adjust and you will be surprised at how uncomplicated this whole process can be!
Your email brought back memories of just a few months ago. I felt so trapped by this disease and wanted to stop eating until I could figure out what I could eat, but that just doesn't work. I remember sitting and looking at the results of my colonoscopy biopsy and wondering what I was going to do. I actually told my husband that I wished some good fairy would come with food that I could eat and would tell me exactly what to eat for the rest of my life. Well, wishing, did not make it so, but this forum was a Godsend!
After I had been on Pepto Bismol for 15 days, my D stopped and now I am horribly constipated, but it is a whole lot easier to deal with than the D. I know that I am not in remission yet, but I have so much more hope than I had even two months ago and my life is much more the way it was before all of this started last May.
I do acupuncture, which has been extremely helpful, but also very expensive, and I am taking a Mindfulness Meditation class, which is invaluable in helping me with my stressors and listening to my body. I make bone broth every few days and even have some in the freezer for when I don't have a soup bone and need more broth. This is a website that tells you how to make it and why it is helpful to your healing gut. http://nourishedkitchen.com/bone-broth/
Just know that the loss of having to eat in a certain way and give up some of the foods you have dearly loved is a grief process and is scary. Allow yourself some time to adjust and you will be surprised at how uncomplicated this whole process can be!
Jane
Diagnosed with Lymphocytic Colitis 12/19/12
"When it gets dark enough,you can see the stars."
Charles A. Beard
Diagnosed with Lymphocytic Colitis 12/19/12
"When it gets dark enough,you can see the stars."
Charles A. Beard
Welcome STL,
So glad you found us. I thought the same as you last summer....thought I was never going to get better. I'm a Celiac as well. Just diagnosed back in the fall but have had symptoms for a few years, but pretty acute and mild. I got on Beta blockers last Spring and that's what either triggered my MC or just added fuel to the fire. It wasn't until I started the Pepto treatment and changed my diet big time that I got better. The Pepto protocol is 8 pills a day for 8 weeks. I did 7 pills a day then weaned off the 3rd month. I've been off the treatment since Dec. 10th. Just wanted to add that it's best to avoid PPI's and NSAIDs. They not only can cause MC but will aggravate it as well. Antibiotics can also cause MC. I would highly recommend Tex's book on MC....I believe it's the only book on this nasty disease.
I think sticking with the chicken soup, rice and veggies will help a lot. Also, fiber is not our friend right now. Stay away from beans as well. After I gave up gluten and dairy, I got a lot better but still had the D. Figured out it was because I was still eating salads and hummus. A lot of us tolerate bananas but some don't. They do well with me. I also switched my Vitamin D because it had soybean oil in it. Still not 100% I react to soy but decided to take most soy out just to be on the safe side. I also avoid pepper and the nightshades (peppers, potatoes, eggplant). I do okay with a little tomato but best to avoid it as well for now. I can now add back in a little red potato and some beans but that's after 7 months of healing.
Hang in there. Sorry you are having issues with Entocort. Do hope the Pepto works for you. Keep us updated and read all you can!!
Terri
So glad you found us. I thought the same as you last summer....thought I was never going to get better. I'm a Celiac as well. Just diagnosed back in the fall but have had symptoms for a few years, but pretty acute and mild. I got on Beta blockers last Spring and that's what either triggered my MC or just added fuel to the fire. It wasn't until I started the Pepto treatment and changed my diet big time that I got better. The Pepto protocol is 8 pills a day for 8 weeks. I did 7 pills a day then weaned off the 3rd month. I've been off the treatment since Dec. 10th. Just wanted to add that it's best to avoid PPI's and NSAIDs. They not only can cause MC but will aggravate it as well. Antibiotics can also cause MC. I would highly recommend Tex's book on MC....I believe it's the only book on this nasty disease.
I think sticking with the chicken soup, rice and veggies will help a lot. Also, fiber is not our friend right now. Stay away from beans as well. After I gave up gluten and dairy, I got a lot better but still had the D. Figured out it was because I was still eating salads and hummus. A lot of us tolerate bananas but some don't. They do well with me. I also switched my Vitamin D because it had soybean oil in it. Still not 100% I react to soy but decided to take most soy out just to be on the safe side. I also avoid pepper and the nightshades (peppers, potatoes, eggplant). I do okay with a little tomato but best to avoid it as well for now. I can now add back in a little red potato and some beans but that's after 7 months of healing.
Hang in there. Sorry you are having issues with Entocort. Do hope the Pepto works for you. Keep us updated and read all you can!!
Terri
Diagnosed with Lymphocytic Colitis in July, 2012 then with Celiac in November, 2012.
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humbird753
- Rockhopper Penguin
- Posts: 1014
- Joined: Mon Nov 28, 2011 4:44 pm
- Location: Wisconsin
Welcome STL,
Sorry you had to find us, but you have come to the right place. OHHHH do I remember when I was feeling like you! I didn't think there was any hope for improvement, but then I found this forum. What a god send it is.
I read a lot and started cooking foods that I believed were safe (i.e., chicken, rice, sweet potatoes, very cooked veggies) and things started to turn around within a few weeks.
You can learn a lot here, and will get the emotional support you need. This a great "family."
Paula
Sorry you had to find us, but you have come to the right place. OHHHH do I remember when I was feeling like you! I didn't think there was any hope for improvement, but then I found this forum. What a god send it is.
I read a lot and started cooking foods that I believed were safe (i.e., chicken, rice, sweet potatoes, very cooked veggies) and things started to turn around within a few weeks.
You can learn a lot here, and will get the emotional support you need. This a great "family."
Paula
Paula
"You'll never know how strong you are until being strong is the only choice you have."
"Life is not about waiting for the storm to pass... It's learning to dance in the rain."
"You'll never know how strong you are until being strong is the only choice you have."
"Life is not about waiting for the storm to pass... It's learning to dance in the rain."
Welcome STL to our family! Looks like you have already gotten a lot of good feedback from out wonderful members. It makes me smile to read the ones from those who I remember sounded just like you just a few months ago.
Since you are Celiac, you probably are already gluten free. Like most have said here, you probably should also take out dairy and soy for now. Maybe even Eggs also. Those are the main inflammatory foods. Then there are the "irritant foods" like raw fruits and veggies, salad, beans and legumes, cirtus and tomato ( acid)... maybe even coffee and tea. They are just too irritating on an inflamed gut. The good news is when you finally have some healing under your belt, you can test one thing back in at a time to see if you react. I have added many things back in since I started this journey. Still have problems with fruit though :(
I was one of those on Entocort at varying degrees for 6 months ( while I changed my diet. It worked wonders for me, but if you really think it is the cause of your itchiness, maybe the Pepto Bismul treatment would work better for you. Keep in mind that the drugs only help you get your life back while you work on your diet. Otherwise, when you titrate down, relapse is likely.
If you want a slight shortcut to knowing what you are reacting to, there is a lab called Enterlab ( check out their website) that runs a stool test for food intolerances that is pretty reliable . It can be pricey, but for some, worth the $.
It is important to check out all your meds. Like some have said here, certain ones can make things worse. Certain antidepressants, advil/aleve type pain killers, acid reducers.... etc.
Protein is important to the healing process, so keep that in mind. It's tough when you are still cooking for a family. I have gotten very good at adapting recipes, but the simple way to do this is to cook a protein, a cooked veggie, and rice.... or just give your family bread to round out their meal. Cook extra so you have lunch foods.
When I was at my worst, I also ate sweet potato, apple sauce, rice cakes with almond butter ( and a little jam), Chex cereal with unsweetened almond milk, eggs, avocado, and olives. As time goes on and you feel better, you will be able to see what you are reacting to. We are all a little different when it comes to fine tuning. Some here can still drink coffee. I can't do coffee or tea. too much sugar is also a problem ( but not a big problem).
Take a deep breath, and know that you can get better. It takes some work and patience, but we have all been there and we are all either getting better each day or are already in remission.
Read as much as you can here and ask anything.
Take Care
Leah
Since you are Celiac, you probably are already gluten free. Like most have said here, you probably should also take out dairy and soy for now. Maybe even Eggs also. Those are the main inflammatory foods. Then there are the "irritant foods" like raw fruits and veggies, salad, beans and legumes, cirtus and tomato ( acid)... maybe even coffee and tea. They are just too irritating on an inflamed gut. The good news is when you finally have some healing under your belt, you can test one thing back in at a time to see if you react. I have added many things back in since I started this journey. Still have problems with fruit though :(
I was one of those on Entocort at varying degrees for 6 months ( while I changed my diet. It worked wonders for me, but if you really think it is the cause of your itchiness, maybe the Pepto Bismul treatment would work better for you. Keep in mind that the drugs only help you get your life back while you work on your diet. Otherwise, when you titrate down, relapse is likely.
If you want a slight shortcut to knowing what you are reacting to, there is a lab called Enterlab ( check out their website) that runs a stool test for food intolerances that is pretty reliable . It can be pricey, but for some, worth the $.
It is important to check out all your meds. Like some have said here, certain ones can make things worse. Certain antidepressants, advil/aleve type pain killers, acid reducers.... etc.
Protein is important to the healing process, so keep that in mind. It's tough when you are still cooking for a family. I have gotten very good at adapting recipes, but the simple way to do this is to cook a protein, a cooked veggie, and rice.... or just give your family bread to round out their meal. Cook extra so you have lunch foods.
When I was at my worst, I also ate sweet potato, apple sauce, rice cakes with almond butter ( and a little jam), Chex cereal with unsweetened almond milk, eggs, avocado, and olives. As time goes on and you feel better, you will be able to see what you are reacting to. We are all a little different when it comes to fine tuning. Some here can still drink coffee. I can't do coffee or tea. too much sugar is also a problem ( but not a big problem).
Take a deep breath, and know that you can get better. It takes some work and patience, but we have all been there and we are all either getting better each day or are already in remission.
Read as much as you can here and ask anything.
Take Care
Leah
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wmonique2
- Rockhopper Penguin
- Posts: 1048
- Joined: Fri Aug 03, 2012 9:06 am
- Location: Georgia, U.S
- Contact:
Helpneed help!
Hello and Bonjour Canada STL,
I won't add to what everybody has already said but I've been there 8 months or more ago... Hang in there, it DOES get better even though you may not think so right now...Keep your spirit up, it will save you.
Feel better.
Monique
I won't add to what everybody has already said but I've been there 8 months or more ago... Hang in there, it DOES get better even though you may not think so right now...Keep your spirit up, it will save you.
Feel better.
Monique
Diagnosed 2011 with LC. Currently on Low Dose Naltrexone (LDN)