Hi everyone, I'm hoping for some support and encouragment. I know I have come to the right place. I was diagnosed with microscopic colitis several years ago after a colonoscopy. I've been on mesalamine with not a whole lot of improvement if any. I stopped after three months. Gastro nurse suggested immodium at night and citrucel in the afternoon. Still not a whole lot of any difference. Now, she suggests I start on Cholestyramine powder. I haven't picked it up yet. I had a physical with my regular physician who suggested I might want to try a naturopathic doc which I did. She tested my blood and found I have a gluten sensitivity. She also did a saliva test and stool test. Once my 6 visits were up and my insurance stopped covering the visits with her, I've been going this solo.
I have been doing my best to stay away from gluten, milk, and soy. I'm an almost 57 year old female who over the last 4 or 5 years has been tied to my home in the mornings especially. I need a bathroom near first thing in the morning and need to go 5 or 6 times in a 2 hour period minimum. I never feel finished and the anxiety of being far from a bathroom keeps me from camping and travel touring. I'd like to get my life back. I checked into Endocort and my insurance doesn't cover the cost.
I'm trying to eat Paleo and I do Crossfit three times a week. Where do I start? What can I try?
I'm new!
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
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Kdavidson8891
- Posts: 6
- Joined: Wed Mar 21, 2012 7:22 pm
- Location: Titusville
Welcome Linda,
I'm also new to this so i don't have much to say because I'm just as lost and confused as you are. I do want to tell you that I'm on the Cholestyramine powder also and it doesn't seem to help me what so ever! My personal opinion is it was a waste of money!!! But everyone is different! God bless and I wish you the best of luck!!
Kel
I'm also new to this so i don't have much to say because I'm just as lost and confused as you are. I do want to tell you that I'm on the Cholestyramine powder also and it doesn't seem to help me what so ever! My personal opinion is it was a waste of money!!! But everyone is different! God bless and I wish you the best of luck!!
Kel
Hi Linda,
Staying completely away from gluten, all dairy, and soy is a good idea. Those three are the main things that people with MC have problems with, although many people have to eliminate other foods as well.
I used Entocort for 3 months, and it was wonderful in that it stopped the D and let me feel normal again. My insurance also did not pay for it. I ordered it from Canada, although most people here order from India, and that is even less expensive than Canada. I paid about $200 for a 3-month supply. I'm not sure what it costs from India, but less than that. Also, my doctor gave me samples to get started with, which really helped. Most people stay on Entocort longer than 3 months.
After I went off the Entocort, I relapsed, as the doctor said I would, then I found this site and decided to try to diet route. I did do the Enterolab testing (at the time I did it, all that was available was gluten, dairy, soy, eggs, and yeast) and it was helpful to have those results to know what things I for sure needed to avoid. If you can afford the Enterolab test, I'd encourage you to do that.
I also eat some coconut every day. I buy unsweetened flaked coconut at the grocery store, and eat about a tablespoon with breakfast every day. Coconut is known in Polynesia as an anti-diarrhea cure.
Welcome to the Potty People.
Love,
Martha
Staying completely away from gluten, all dairy, and soy is a good idea. Those three are the main things that people with MC have problems with, although many people have to eliminate other foods as well.
I used Entocort for 3 months, and it was wonderful in that it stopped the D and let me feel normal again. My insurance also did not pay for it. I ordered it from Canada, although most people here order from India, and that is even less expensive than Canada. I paid about $200 for a 3-month supply. I'm not sure what it costs from India, but less than that. Also, my doctor gave me samples to get started with, which really helped. Most people stay on Entocort longer than 3 months.
After I went off the Entocort, I relapsed, as the doctor said I would, then I found this site and decided to try to diet route. I did do the Enterolab testing (at the time I did it, all that was available was gluten, dairy, soy, eggs, and yeast) and it was helpful to have those results to know what things I for sure needed to avoid. If you can afford the Enterolab test, I'd encourage you to do that.
I also eat some coconut every day. I buy unsweetened flaked coconut at the grocery store, and eat about a tablespoon with breakfast every day. Coconut is known in Polynesia as an anti-diarrhea cure.
Welcome to the Potty People.
Love,
Martha
Martha
Welcome Linda,
You've come to the right place. I was able to control all my MC symptoms without medication, except for occasional Pepto Bismol tablets, but it was a long process -- almost 2 years until I reached full "remission," and even then, the slightest speck of gluten causes a 24 hour flare. But I felt 80% better immediately after cutting all gluten, dairy and most soy. My doc offered me Mesalamine and I declined, call me hard-headed. I finally reached remission when I discovered my last significant food sensitivity through celiac cross-reactivity testing- sesame seeds.
In addition to the diet, certain vitamin deficiencies can contribute to your symptoms and lessen your ability to heal. With D as long as you've had it, malabsorption of nutrients should be suspected. Many here take Vitamin D3 (it's worth having your levels checked by your doctor), B-complex (especially B12), calcium, magnesium (beware of certain forms that can aggravate D), fish oil (omega3s), and others. Many also take a dairy-free probiotic such as Culturelle, since gut bacteria also play a role in MC.
Paleo is probably the best diet to follow once your symptoms are under control, but until then, keep in mind that raw fruits and veggies can really aggravate your MC, especially salads. Citrus and other tart fruits can be problematic too. And the Citrucel you were offered might as well be sandpaper. Sticking with peeled and/or cooked fruits and well-cooked veggies is the way to go while you are healing.
You've come to the right place. I was able to control all my MC symptoms without medication, except for occasional Pepto Bismol tablets, but it was a long process -- almost 2 years until I reached full "remission," and even then, the slightest speck of gluten causes a 24 hour flare. But I felt 80% better immediately after cutting all gluten, dairy and most soy. My doc offered me Mesalamine and I declined, call me hard-headed. I finally reached remission when I discovered my last significant food sensitivity through celiac cross-reactivity testing- sesame seeds.
In addition to the diet, certain vitamin deficiencies can contribute to your symptoms and lessen your ability to heal. With D as long as you've had it, malabsorption of nutrients should be suspected. Many here take Vitamin D3 (it's worth having your levels checked by your doctor), B-complex (especially B12), calcium, magnesium (beware of certain forms that can aggravate D), fish oil (omega3s), and others. Many also take a dairy-free probiotic such as Culturelle, since gut bacteria also play a role in MC.
Paleo is probably the best diet to follow once your symptoms are under control, but until then, keep in mind that raw fruits and veggies can really aggravate your MC, especially salads. Citrus and other tart fruits can be problematic too. And the Citrucel you were offered might as well be sandpaper. Sticking with peeled and/or cooked fruits and well-cooked veggies is the way to go while you are healing.
Hi Linda,
Welcome to our internet family. You seem to be on the right track, but remember that we are extremely sensitivity to the foods that affect us. In many cases, only a tiny crumb of a food that contains gluten will cause a reaction, and for most of us, the tiny amount of lactose or soy oil in vitamins or medications, can be enough to prevent us from reaching remission from symptoms. And, of course, cross-contamination and mislabeling of processed foods is a serious problem. That's why many of us avoid all but the simplest processed foods, and do all our own cooking, from scratch. Many of us find that if we avoid any processed food products that list more than approximately 5 ingredients, we are far less likely to get into trouble.
As Martha mentioned, if you can afford them, the tests offered by EneroLab, in Dallas, TX, can resolve any questions about whether or not you are sensitive to the foods for which they offer tests. Those stool tests are very sensitive, and very reliable. No other lab can come close. The other option is to just avoid the foods that are primary suspects, (as you are doing), and keep a food diary, to see if you can recognize any patterns that might indicate a sensitivity to certain meals/foods. That's how I figured out my problems, years ago.
The active ingredient in Entocort is budesonide, and as Martha mentioned, the generic version of budesonide sold by most online Canadian pharmacies is made in India, so it can be purchased online, direct from India, for significantly less money. The last time I checked, a 3-month supply, (270 capsules), was priced at $121.50, plus shipping. Most members who order their budesonide, buy it from the online pharmacy at the following link. They seem to be very reliable, but remember that since shipments have to go through Customs, it can take from 2 to 3 weeks to receive an order, depending on how long it gets delayed in Customs.
https://www.alldaychemist.com/1447-budez-cr-3mg.html
While Canadian online pharmacies require a prescription from U. S. customers, that's just a feel-good requirement, because prescriptions written by doctors licensed to practice in the U. S. are worthless in Canada, (or anywhere else past the U. S. borders). Consequently, no prescription is necessary, to order from the pharmacy at the above link.
Zizzle is quite correct that most of us eventually develop a deficiency of certain vitamins and minerals after reacting for years, especially vitamin D, (which is vitally important for our immune system), B-12, and magnesium. Be careful with magnesium, though, since it's a laxative, in significant amounts. The advice that she offers on fruits and vegetables is right on the money, also - fiber must be limited in the diet, during recovery, because it's very abrasive to our hypersensitive intestines. I also agree about the Citrucel. When I was recovering, any citrus-based products would cause me to react, (including any citric acid ingredients made from corn).
Again, welcome aboard, and please feel free to ask anything.
Tex
Welcome to our internet family. You seem to be on the right track, but remember that we are extremely sensitivity to the foods that affect us. In many cases, only a tiny crumb of a food that contains gluten will cause a reaction, and for most of us, the tiny amount of lactose or soy oil in vitamins or medications, can be enough to prevent us from reaching remission from symptoms. And, of course, cross-contamination and mislabeling of processed foods is a serious problem. That's why many of us avoid all but the simplest processed foods, and do all our own cooking, from scratch. Many of us find that if we avoid any processed food products that list more than approximately 5 ingredients, we are far less likely to get into trouble.
As Martha mentioned, if you can afford them, the tests offered by EneroLab, in Dallas, TX, can resolve any questions about whether or not you are sensitive to the foods for which they offer tests. Those stool tests are very sensitive, and very reliable. No other lab can come close. The other option is to just avoid the foods that are primary suspects, (as you are doing), and keep a food diary, to see if you can recognize any patterns that might indicate a sensitivity to certain meals/foods. That's how I figured out my problems, years ago.
The active ingredient in Entocort is budesonide, and as Martha mentioned, the generic version of budesonide sold by most online Canadian pharmacies is made in India, so it can be purchased online, direct from India, for significantly less money. The last time I checked, a 3-month supply, (270 capsules), was priced at $121.50, plus shipping. Most members who order their budesonide, buy it from the online pharmacy at the following link. They seem to be very reliable, but remember that since shipments have to go through Customs, it can take from 2 to 3 weeks to receive an order, depending on how long it gets delayed in Customs.
https://www.alldaychemist.com/1447-budez-cr-3mg.html
While Canadian online pharmacies require a prescription from U. S. customers, that's just a feel-good requirement, because prescriptions written by doctors licensed to practice in the U. S. are worthless in Canada, (or anywhere else past the U. S. borders). Consequently, no prescription is necessary, to order from the pharmacy at the above link.
Zizzle is quite correct that most of us eventually develop a deficiency of certain vitamins and minerals after reacting for years, especially vitamin D, (which is vitally important for our immune system), B-12, and magnesium. Be careful with magnesium, though, since it's a laxative, in significant amounts. The advice that she offers on fruits and vegetables is right on the money, also - fiber must be limited in the diet, during recovery, because it's very abrasive to our hypersensitive intestines. I also agree about the Citrucel. When I was recovering, any citrus-based products would cause me to react, (including any citric acid ingredients made from corn).
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 I'm new also
Hi Linda. I know how you feel . I am fairly new to all of this and just recently found out that the test results from Enterolab probably won't tell me what I need to know because I am one of the 1 in 300 that may not produce the anti-bodies that are the marker for these test. So, I am back to square one..... But my insurance does cover Entocort and it has worked wonders for me. I went from liquid D 5-6 times a day to normal within a week! It has given me my life back. I am Gluten and Dairy free and will probably stay that way. I stay away from salads, uncooked veggies,beans, tomato products, and fresh fruit also, but am hoping that once I ween off of Entocort and see how I am doing, I can try to add some of these "irritants" back in ( one at a time). I am coming to grips with the fact that this is a slow process, but one that can be figured out with patience.
The people here know a lot. Try to read as many posts as you have time for. I have learned so much already.
good luck.
Leah
The people here know a lot. Try to read as many posts as you have time for. I have learned so much already.
good luck.
Leah
Hi Linda, and welcome!
This is the best place to get information about how to deal with MC, and even more important, for support while getting through it.
Some of us have more difficulty controlling the disease, while others manage to get it under control relatively quickly. While I hope you belong to the latter group, you can get information and support for every last problem you have in this forum.
For me it's been a life saver.
Lesley
This is the best place to get information about how to deal with MC, and even more important, for support while getting through it.
Some of us have more difficulty controlling the disease, while others manage to get it under control relatively quickly. While I hope you belong to the latter group, you can get information and support for every last problem you have in this forum.
For me it's been a life saver.
Lesley
I can't thank you all enough for the wonderful welcome! The dietary changes I need to make are going to be challenging for me. I am hopeful I can meet the challenge with your encouragment. I am a fresh salad fan to say the least. I'm not so much a cooked veggie or cooked fruit lover but I can see this is what will be required of me to get to a place of healing. I had a FoodStats Antibody Assessment through US BioTek one year ago. It was suggested that I retest after 6 months which I did not do. The findings state that my reactive foods which are Class IV and greater IgA/lgG- Rye, Spelt, Wheat Gliadin, Wheat Gluten, Whole Wheat. Class I and greter IgE- Whole Wheat. Class III IgA/lgG- Barley, Chicken Egg White, Chicken Egg Yolk, Whey. The naturopath suggested I stay away from dairy products while I heal. I can do the testing through Texas if you think the results would be at all helpful. I will also send for the Entocort via the link that was provided. I thought it was much more costly. I will be taking a cruise beginning April 12th for several weeks so I will need to come up with a plan for sure. The ship is aware I will need to remain gluten free. I don't think the Entocort will arrive before I leave. Any suggestions would be most welcome.
I understand I will need to be vigilant in scanning labels thoroughly which is something I have not been doing. If the label says gluten free/dairy free, I think I'm in the clear which is not always the case. I'm afraid I always look for the easy way out when it comes to food preparation.
Yesterday I took Ibuprefen after dental work last week and this morning I had a difficult time with D. I wonder if Ibuprofen was the culprit.
For the last several weeks, I have been taking 5,000 IU of Vitamin D3, 500mg Omega-3 fish oil, and a Calcium, Magnesium & Zinc combo. I also take Lisinopril for high blood pressure. The naturopath has me taking capsules of B.P.P. from Thorne Research and a a powder called Glutagenics. I see no difference.
I'm going to try the coconut and I'm not sure whether the powder the gastro nurse suggested is worth trying. Thanks again for the warm welcome. I'm going to need your support and I'm so grateful you are here.
LindaB
I understand I will need to be vigilant in scanning labels thoroughly which is something I have not been doing. If the label says gluten free/dairy free, I think I'm in the clear which is not always the case. I'm afraid I always look for the easy way out when it comes to food preparation.
Yesterday I took Ibuprefen after dental work last week and this morning I had a difficult time with D. I wonder if Ibuprofen was the culprit.
For the last several weeks, I have been taking 5,000 IU of Vitamin D3, 500mg Omega-3 fish oil, and a Calcium, Magnesium & Zinc combo. I also take Lisinopril for high blood pressure. The naturopath has me taking capsules of B.P.P. from Thorne Research and a a powder called Glutagenics. I see no difference.
I'm going to try the coconut and I'm not sure whether the powder the gastro nurse suggested is worth trying. Thanks again for the warm welcome. I'm going to need your support and I'm so grateful you are here.
LindaB
Linda,
Most cruise lines do an excellent job of handling food-sensitivities, if you let them know what you need to avoid.
Entocort is ridiculously expensive here in the States. A three-month supply costs several thousand dollars. That's why most members without insurance order it from that online pharmacy. In some cases, their price is cheaper than the copay here in the U. S., even with good insurance.
For many of us, NSAIDs, (including Ibuprofen), will trigger an MC reaction, (they cause the production of pro-inflammatory leukotrienes, by our immune system). NSAIDs are the number one cause of drug-induced MC. So yes, the Ibuprofen probably made your D worse, today. That means that you probably won't be able to use mesalamine, or any of the mesalamine-based meds such as Asacol, Apriso, Lialda, Pentasa, Colazal, etc., either, since mesalamine is a derivative of salicylic acid, similar to NSAIDs. The only safe painkiller for those of us with MC, (other than the narcotic painkillers), is acetaminophen, unfortunately.
Cholestyramine is a bile acid sequestrant, with the side effect of constipation. It does nothing to suppress inflammation, but because it causes constipation for many people, some people with MC find that it will help to slow down the D, while others find that it does nothing but cause abdominal pain and cramps.
Maybe if you tell your doctor that you are going on a cruise, and you ask for a prescription for Entocort, he or she would write you one for enough Entocort to tide you over until you finish the cruise. Don't tell your doctor that you are ordering a supply from an overseas pharmacy, though, because most doctors resent patients who do that - doctors almost always side with the pharmaceutical companies, and they tend to look out for their interests. Apparently they feel that it's part of their job to help the pharmaceutical companies rob us blind.
Tex
Most cruise lines do an excellent job of handling food-sensitivities, if you let them know what you need to avoid.
Entocort is ridiculously expensive here in the States. A three-month supply costs several thousand dollars. That's why most members without insurance order it from that online pharmacy. In some cases, their price is cheaper than the copay here in the U. S., even with good insurance.
For many of us, NSAIDs, (including Ibuprofen), will trigger an MC reaction, (they cause the production of pro-inflammatory leukotrienes, by our immune system). NSAIDs are the number one cause of drug-induced MC. So yes, the Ibuprofen probably made your D worse, today. That means that you probably won't be able to use mesalamine, or any of the mesalamine-based meds such as Asacol, Apriso, Lialda, Pentasa, Colazal, etc., either, since mesalamine is a derivative of salicylic acid, similar to NSAIDs. The only safe painkiller for those of us with MC, (other than the narcotic painkillers), is acetaminophen, unfortunately.
Cholestyramine is a bile acid sequestrant, with the side effect of constipation. It does nothing to suppress inflammation, but because it causes constipation for many people, some people with MC find that it will help to slow down the D, while others find that it does nothing but cause abdominal pain and cramps.
Maybe if you tell your doctor that you are going on a cruise, and you ask for a prescription for Entocort, he or she would write you one for enough Entocort to tide you over until you finish the cruise. Don't tell your doctor that you are ordering a supply from an overseas pharmacy, though, because most doctors resent patients who do that - doctors almost always side with the pharmaceutical companies, and they tend to look out for their interests. Apparently they feel that it's part of their job to help the pharmaceutical companies rob us blind.
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 Tex,
I will pursue the Endocort option right away. I've been checking out other threads and I see I need to be absolutely vigilant about what I'm putting into my body. In one thread you mentioned how you couldn't understand why someone who was having real problems with MC wouldn't change their diet in order to feel better. I have been procrastinating and have not been careful. Sometimes I'm just plain mad that I have to do this. I don't know what it would be like to wake up, go to the bathroom, have breakfast and be off to start my day. I wonder what's holding me back? It is time to put my "big girl panties on" and see what it could be like to be free and have energy to live a healthy life.
I will pursue the Endocort option right away. I've been checking out other threads and I see I need to be absolutely vigilant about what I'm putting into my body. In one thread you mentioned how you couldn't understand why someone who was having real problems with MC wouldn't change their diet in order to feel better. I have been procrastinating and have not been careful. Sometimes I'm just plain mad that I have to do this. I don't know what it would be like to wake up, go to the bathroom, have breakfast and be off to start my day. I wonder what's holding me back? It is time to put my "big girl panties on" and see what it could be like to be free and have energy to live a healthy life.
Linda,
I was mad about having to do this too. In fact, I went through all the stages of grief when I started the diet. It took months before I stopped getting teary-eyed at parties, nice restaurants, and gourmet grocery stores. But I am thankful I have a disease I am able to control without meds and with a rediculously healthy diet (which should pay off in preventing other health issues later). It sucks in the beginning, but it gets easier, and eventually becomes second-nature.
I was mad about having to do this too. In fact, I went through all the stages of grief when I started the diet. It took months before I stopped getting teary-eyed at parties, nice restaurants, and gourmet grocery stores. But I am thankful I have a disease I am able to control without meds and with a rediculously healthy diet (which should pay off in preventing other health issues later). It sucks in the beginning, but it gets easier, and eventually becomes second-nature.