Hi, I am new to both colitis and message boards. I was diagnosed with microscopic colitis about 2 months ago. I have had problems with diverticulitis and constipation for several years, so the sudden pain and diarrhea was quite a change for me. I have had no success in relieving symptoms with diet. My dr suggested entocort, but I have no insurance and can't afford it. I have heard about the Pepto regimen and am considering it, but I am concerned that it will cause constipation and trigger another attack of diverticulitis. Does anyone else have these dual issues? Have you used the Pepto with success or does it cause constipation? I am getting desperate for some relief! Please help.
Also, I have been having a lot of headaches for the last few months. Does anyone know if that culd be related to the colitis?
newly diagnosed-need advice
Moderators: Rosie, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi Vicki,
Welcome aboard.
Since you didn't specify, I have no idea what type of diet changes you made, but most of us have found that in order to control the symptoms of this disease, we have to totally avoid all gluten, and dairy products, and about half of us also have to avoid all products made with any form of soy. Some of us also have other food sensitivities, such as eggs, yeast, corn, etc.
If you want to try a cheap generic form of Entocort, there is a way to do that. There is no generic form of Entocort in this country, and the cost of the name brand product is absolutely prohibitive, so several members use a generic form of the active ingredient in Entocort, (budesonide), that they order from an overseas pharmacy, at the link below. Since prescriptions written by foreign doctors are invalid, no prescription is necessary to order from there.
https://www.alldaychemist.com/1283_Entocort-EC
A 30-day supply, (90 capsules) costs $40.50, (in U. S. dollars), plus shipping. It takes several weeks to arrive, usually, since it has to go through Customs, but so far, while Customs will confiscate large orders, (addressed to dealers), they are allowing shipments to individuals to go through, (presumably for up to approximately a 3-month supply, but I'm just guessing here). So far, everyone using this product has been well satisfied, and they say they are unable to tell the difference between it and the name brand product, as far as their treatment results are concerned.
Diverticulosis definitely complicates treating MC, because fiber is a no-no for someone with MC. It tends to make the symptoms much worse, and can prevent achieving remission, because fiber tends to irritate our already hypersensitive intestines. Everyone reacts differently to various medications, but in general, yes, the Pepto treatment has been known to cause constipation problems for some members. We each have to work out our own optimum treatment program by trial and error.
Again, welcome aboard, and please feel free to ask anything.
Tex
Welcome aboard.
I did have, until my colon was removed (not to worry, it had nothing to do with either MC or diverticulitis), and my symptoms tended to alternate between diarrhea, (D), and constipation, (C).vickileen wrote:Does anyone else have these dual issues?
Since you didn't specify, I have no idea what type of diet changes you made, but most of us have found that in order to control the symptoms of this disease, we have to totally avoid all gluten, and dairy products, and about half of us also have to avoid all products made with any form of soy. Some of us also have other food sensitivities, such as eggs, yeast, corn, etc.
If you want to try a cheap generic form of Entocort, there is a way to do that. There is no generic form of Entocort in this country, and the cost of the name brand product is absolutely prohibitive, so several members use a generic form of the active ingredient in Entocort, (budesonide), that they order from an overseas pharmacy, at the link below. Since prescriptions written by foreign doctors are invalid, no prescription is necessary to order from there.
https://www.alldaychemist.com/1283_Entocort-EC
A 30-day supply, (90 capsules) costs $40.50, (in U. S. dollars), plus shipping. It takes several weeks to arrive, usually, since it has to go through Customs, but so far, while Customs will confiscate large orders, (addressed to dealers), they are allowing shipments to individuals to go through, (presumably for up to approximately a 3-month supply, but I'm just guessing here). So far, everyone using this product has been well satisfied, and they say they are unable to tell the difference between it and the name brand product, as far as their treatment results are concerned.
Diverticulosis definitely complicates treating MC, because fiber is a no-no for someone with MC. It tends to make the symptoms much worse, and can prevent achieving remission, because fiber tends to irritate our already hypersensitive intestines. Everyone reacts differently to various medications, but in general, yes, the Pepto treatment has been known to cause constipation problems for some members. We each have to work out our own optimum treatment program by trial and error.
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.
Thank you so much for the advice. I have eliminated dairy and try to stick to low fat foods. I did not know about eliminating soy. I drink soy milk every day! I also didn't know about eliminating gluten, so I think I will try these changes before I get the medicine. But it is good to know where to get it at a reasonable price if these changes don't help. I have been confused a lot because for diverticulitis I need a high fiber diet and for colitis I need a low fiber diet. Can't do both. My doctor has not been very helpful. He just said to get the entcort and that there were no dietary changes neccessary. I'm learning more from helpful people like you! Thanks again.
Hi, Vickileen. 
I am fairly new to this also, but I'll throw in my two cents. My doctor also told me diet was not an issue, and prescribed Entocort. He gave me about 3 weeks worth of samples, so I got enough of a trial to know that it really helped me. Then since it is so expensive, I ordered it from an online pharmacy in Canada. I hadn't found this forum yet, so didn't know about the place recommended here. I paid more than what Tex mentioned (I paid $200 for a 3-month supply), but it was doable for the short-term.
I stayed on Entocort for 3 months, but after I quit, the D came back in 3 weeks, just as the doctor had told me it would. When I balked at the price of Entocort, he told me one of his patients eats coconut macaroons and that helped her D. I tried that, and it helps me too, decreasing the D enough that I didn't feel the need to go back on Entocort. I now eat some unsweetened flaked coconut every day. It doesn't help everyone, but it seems to help me. I don't know how coconut would affect your diverticulitis, but the flaked stuff might irritate it.
At that same time, I found this forum, and after reading for a couple of months, I joined, started asking questions, and became convinced that going gluten-free was a good idea. Even though I wasn't having the urgent D any more, knowing that my gut was probably still being damaged by eating gluten, and that I might have worse problems later on was a major motivator to cut out the gluten. It takes quite a while to get gluten out of your body (or maybe it's the antibodies to gluten that stay so long), so you have to be persistent. I had tried cutting out gluten for a week or two at a time twice before, but that isn't long enough to see any advantage from the dietary change. Tex and others says that it can take 6 months to a year to heal the gut from the damage caused by gluten, so diet alone is a slow process.
My advice would be to order Entocort on line, and use it to jump-start your recovery. Many people have good success with it.
Just as an aside, I've noticed that I have fewer headaches since I've gone gluten-free.
Love,
Martha
I am fairly new to this also, but I'll throw in my two cents. My doctor also told me diet was not an issue, and prescribed Entocort. He gave me about 3 weeks worth of samples, so I got enough of a trial to know that it really helped me. Then since it is so expensive, I ordered it from an online pharmacy in Canada. I hadn't found this forum yet, so didn't know about the place recommended here. I paid more than what Tex mentioned (I paid $200 for a 3-month supply), but it was doable for the short-term.
I stayed on Entocort for 3 months, but after I quit, the D came back in 3 weeks, just as the doctor had told me it would. When I balked at the price of Entocort, he told me one of his patients eats coconut macaroons and that helped her D. I tried that, and it helps me too, decreasing the D enough that I didn't feel the need to go back on Entocort. I now eat some unsweetened flaked coconut every day. It doesn't help everyone, but it seems to help me. I don't know how coconut would affect your diverticulitis, but the flaked stuff might irritate it.
At that same time, I found this forum, and after reading for a couple of months, I joined, started asking questions, and became convinced that going gluten-free was a good idea. Even though I wasn't having the urgent D any more, knowing that my gut was probably still being damaged by eating gluten, and that I might have worse problems later on was a major motivator to cut out the gluten. It takes quite a while to get gluten out of your body (or maybe it's the antibodies to gluten that stay so long), so you have to be persistent. I had tried cutting out gluten for a week or two at a time twice before, but that isn't long enough to see any advantage from the dietary change. Tex and others says that it can take 6 months to a year to heal the gut from the damage caused by gluten, so diet alone is a slow process.
My advice would be to order Entocort on line, and use it to jump-start your recovery. Many people have good success with it.
Just as an aside, I've noticed that I have fewer headaches since I've gone gluten-free.
Love,
Martha
Martha
WELCOME VICKI!!! 
You've received some excellent advice already. I'm sure you are reading as much as you can on this board. That will help inform you quickly.
If you choose to also use diet to manage your MC, I would recommend that you begin maintaining a food diary. We've nicknamed it the "Winning the Poo Diary."
It will be easier to determine what foods are bothering you if you keep a record of everything you eat and all of your bodily responses: gurgling, headaches, BMs, including what type and how often. I've found my diary to be an immense help in determining my food intolerances. Most of us have been able to get our lives back by learning what food triggers to avoid. Some, but not all, of us also use medications such as Entocort, Imodium or Asacol to help control our symptoms.
Feel free to ask any questions - we will not be shocked or embarrassed; we've probably experienced similar symptoms.
Gloria
You've received some excellent advice already. I'm sure you are reading as much as you can on this board. That will help inform you quickly.
If you choose to also use diet to manage your MC, I would recommend that you begin maintaining a food diary. We've nicknamed it the "Winning the Poo Diary."
It will be easier to determine what foods are bothering you if you keep a record of everything you eat and all of your bodily responses: gurgling, headaches, BMs, including what type and how often. I've found my diary to be an immense help in determining my food intolerances. Most of us have been able to get our lives back by learning what food triggers to avoid. Some, but not all, of us also use medications such as Entocort, Imodium or Asacol to help control our symptoms.Feel free to ask any questions - we will not be shocked or embarrassed; we've probably experienced similar symptoms.
Gloria
You never know what you can do until you have to do it.
Pat,
Whoa! Thanks for pointing out my carelessness - I apparently forgot to add the link.
I've edited the original post, and added it, and here it is again, for convenience:
https://www.alldaychemist.com/1283_Entocort-EC
Thanks,
Tex
Whoa! Thanks for pointing out my carelessness - I apparently forgot to add the link.
I've edited the original post, and added it, and here it is again, for convenience:
https://www.alldaychemist.com/1283_Entocort-EC
Thanks,
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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Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Vicki
gday from australia
The food diary is fantastic for lots of reasons
not only to see what food items you react to but also to learn about your bodies reactions so that you can minimise accidents occuring. I now have awareness of some symptoms that are like a 20 minute warning system...
Good luck processing all the information on this site, it can be overwhelming at first..... as time goes on the value of the learnings of these people is invaluable...
take care
gday from australia
The food diary is fantastic for lots of reasons
not only to see what food items you react to but also to learn about your bodies reactions so that you can minimise accidents occuring. I now have awareness of some symptoms that are like a 20 minute warning system...
Good luck processing all the information on this site, it can be overwhelming at first..... as time goes on the value of the learnings of these people is invaluable...
take care
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
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Linda in BC
- Rockhopper Penguin
- Posts: 801
- Joined: Mon Apr 19, 2010 9:39 am
- Location: Creston British Columbia
Welcome to you Vicki, from Canada! Not much I can add... good advice given already.
with regard to the pepto causing constipation. you can always adjust your dosage down if it does. Entocort did that to me when I first started at three a day. I had to drop to one within a week, and then I was fine.
Wishing you fast healing and answers,
Linda
with regard to the pepto causing constipation. you can always adjust your dosage down if it does. Entocort did that to me when I first started at three a day. I had to drop to one within a week, and then I was fine.
Wishing you fast healing and answers,
Linda
"Be kind whenever possible. It is always possible."
The 13th Dali Lama
The 13th Dali Lama