Hello all, a newbie here. I am so happy to know about this forum. I have been reading and enjoying all the words of encouragement and suggestions. I was diagnosed with collagenous colitis last year after a biopsy and it has been downhill ever since. I have a new doctor and she has me taking 800 mg asacol 3x day (unbelievably expensive - $400-800/30 day supply), 2 mg robinul forte 2x day, 2.5 lomotil 2x day and I am still a mess! I take 1/2 a Claritin each day. The only thing that has happened is that my "events" seem to occur in the mornings and nights, not at work. She has ordered stool sample tests but nothing was found last time so I don't anticipate much. I will ask her about Enterolab. I am keeping a food journal and thinking of making some more changes other than eliminating dairy and caffeine (which is the only thing that has been recommended).
Question: is there a cheap place to get asacol??
Question: She has suggested budesonide (entocort) but I am worried about side effects. Is this something I need to be worried about?
Thank you all for being here. This has been a tough road.
wwwb
Newbie questions
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
HI WWWB and 
First of all, you will likely learn more from this forum than you will from your doc - at least about the importance of food sensitivity in MC. Docs just don't know much about the food connection. However, the folks here do, because they have learned firsthand what works. Also, your doc will probably not have heard of Enterolab, but that is where many of us began our journey to health. If she will order the test, your insurance might cover it. If not, most of us would advise you it is a worthwhile investment out-of-pocket.
Good for you for keeping a food journal! A great start to designing a treatment plan that works for you! And good for you for thinking of eliminating some other foods. I would suggest gluten next, since virtually 99.9% of us here are sensitive to gluten. The "big three" that folks here are most likely sensitive to are, in order of frequency: gluten, dairy, and soy. The quickest way to health is to eat whole foods as much as possible. Avoid like the plague processed foods - anything in cellophane bags or cardboard boxes. LOL.
I don't know where you can get asacol the cheapest, but I know some here do. They will jump in, I'm sure. Many here have had success with budesonide, although it is important also to avoid problem foods during treatment so that hopefully, when you discontinue the med, you can maintain remission by diet alone. Although it is a steroid, the great majority of it remains in the GI tract and is not absorbed systemically. Thus, there is less concern about any long-term effects.
I hear you about what a rough road this is. The good news is that we all understand and can support each other. No one without MC can truly understand what it is like to live with it.
Hang in there.....it WILL get better!
Polly
First of all, you will likely learn more from this forum than you will from your doc - at least about the importance of food sensitivity in MC. Docs just don't know much about the food connection. However, the folks here do, because they have learned firsthand what works. Also, your doc will probably not have heard of Enterolab, but that is where many of us began our journey to health. If she will order the test, your insurance might cover it. If not, most of us would advise you it is a worthwhile investment out-of-pocket.
Good for you for keeping a food journal! A great start to designing a treatment plan that works for you! And good for you for thinking of eliminating some other foods. I would suggest gluten next, since virtually 99.9% of us here are sensitive to gluten. The "big three" that folks here are most likely sensitive to are, in order of frequency: gluten, dairy, and soy. The quickest way to health is to eat whole foods as much as possible. Avoid like the plague processed foods - anything in cellophane bags or cardboard boxes. LOL.
I don't know where you can get asacol the cheapest, but I know some here do. They will jump in, I'm sure. Many here have had success with budesonide, although it is important also to avoid problem foods during treatment so that hopefully, when you discontinue the med, you can maintain remission by diet alone. Although it is a steroid, the great majority of it remains in the GI tract and is not absorbed systemically. Thus, there is less concern about any long-term effects.
I hear you about what a rough road this is. The good news is that we all understand and can support each other. No one without MC can truly understand what it is like to live with it.
Hang in there.....it WILL get better!
Polly
Blessed are they who can laugh at themselves, for they shall never cease to be amused.
Welcome WWWB!
Like Polly said, you will learn more here than from the Doctors. Most just throw drugs at us and think you will spontaneously go into remission. Ha ha ha. The connection to food is obvious to all of us here. We all differ In what we can and can not eat, but gluten is the most common denominator and the antibodies we produce from it causes inflammation and can live up to 120 days in our gut! That's why it is so important to be 100% GF. Dairy is the next offender. Soy and Eggs follow.
I am one of us who took Entocort ( for 6 months). It worked great for me with no side effects…except constipation when I needed to lower the dose. That was more then two years ago for me. What's important to do with Entocort is stay on it for at least 4 months ( weaning the dose as you go). Too short a time on it usually ends in relapse. Another is to eliminate all foods you think COULD be an issue. All the drugs we take will mask our intolerances to a point. So, your food diary will only help a little while taking drugs. You will notice more food reactions as you wean off the drugs. I didn't notice my soy reaction until I was on a very low dose ( which also meant peanut butter, which is a legume)
Some other foods that can cause problems while we are trying to heal are: the fiber in RAW fruits and veggies, and beans and legumes. Acid foods like citrus and tomato. Too much sugar and artificial sweeteners. Spicy foods.
So, what do we eat when we are still trying to heal? a high protein diet (meats). Some of us can eat white rice and/or potatoes, others can't have grains at all. Well cooked veggies like carrots, squash, green beans, and sweet potatoes. Home made broth soups.I was able to eat eggs and GF Chex cereal with almond milk. I was also able to eat almond butter ( on rice cakes) and eat some cashews and almonds, but some of us can't eat nuts. I was also eating avocados and olives. It's also a good idea to stick to either olive oil or coconut oil for cooking.
Sems daunting, I know. But the good news is once you heal your gut, you can test all these foods back in. Since being off the Budesonide, I have been able to add all my veggies back in, some beans, white potatoes, dark soy free chocolate, decaf coffee and tea, and even spicy foods! The key is to heal first. It takes time and patience, but it's so worth it in the end.
Good luck. Ask anything and keep us posted.
Leah
Like Polly said, you will learn more here than from the Doctors. Most just throw drugs at us and think you will spontaneously go into remission. Ha ha ha. The connection to food is obvious to all of us here. We all differ In what we can and can not eat, but gluten is the most common denominator and the antibodies we produce from it causes inflammation and can live up to 120 days in our gut! That's why it is so important to be 100% GF. Dairy is the next offender. Soy and Eggs follow.
I am one of us who took Entocort ( for 6 months). It worked great for me with no side effects…except constipation when I needed to lower the dose. That was more then two years ago for me. What's important to do with Entocort is stay on it for at least 4 months ( weaning the dose as you go). Too short a time on it usually ends in relapse. Another is to eliminate all foods you think COULD be an issue. All the drugs we take will mask our intolerances to a point. So, your food diary will only help a little while taking drugs. You will notice more food reactions as you wean off the drugs. I didn't notice my soy reaction until I was on a very low dose ( which also meant peanut butter, which is a legume)
Some other foods that can cause problems while we are trying to heal are: the fiber in RAW fruits and veggies, and beans and legumes. Acid foods like citrus and tomato. Too much sugar and artificial sweeteners. Spicy foods.
So, what do we eat when we are still trying to heal? a high protein diet (meats). Some of us can eat white rice and/or potatoes, others can't have grains at all. Well cooked veggies like carrots, squash, green beans, and sweet potatoes. Home made broth soups.I was able to eat eggs and GF Chex cereal with almond milk. I was also able to eat almond butter ( on rice cakes) and eat some cashews and almonds, but some of us can't eat nuts. I was also eating avocados and olives. It's also a good idea to stick to either olive oil or coconut oil for cooking.
Sems daunting, I know. But the good news is once you heal your gut, you can test all these foods back in. Since being off the Budesonide, I have been able to add all my veggies back in, some beans, white potatoes, dark soy free chocolate, decaf coffee and tea, and even spicy foods! The key is to heal first. It takes time and patience, but it's so worth it in the end.
Good luck. Ask anything and keep us posted.
Leah
Hi WWWB,
Welcome aboard. For a reliable source of Asacol 400 mg, at a price that makes a lot more sense ($42.15 for 90 tablets, plus shipping), try the link below. Most members here who do not have insurance, get their generic Entocort (Budez CR) from this vendor. Please be aware that since this supplier is overseas, shipping can typically run $30-$40, so it pays to order a 3-month supply, if you will have a need for that much, because the shipping will probably be pretty much the same. Since a doctor's prescription is invalid across borders, no prescription is needed when ordering.
FWIW, generic budesonide (Entocort), known as Budez CR is priced almost the same from this supplier, but it's very expensive in the U. S.
http://www.alldaychemist.com/asacol.html
Tex
Welcome aboard. For a reliable source of Asacol 400 mg, at a price that makes a lot more sense ($42.15 for 90 tablets, plus shipping), try the link below. Most members here who do not have insurance, get their generic Entocort (Budez CR) from this vendor. Please be aware that since this supplier is overseas, shipping can typically run $30-$40, so it pays to order a 3-month supply, if you will have a need for that much, because the shipping will probably be pretty much the same. Since a doctor's prescription is invalid across borders, no prescription is needed when ordering.
FWIW, generic budesonide (Entocort), known as Budez CR is priced almost the same from this supplier, but it's very expensive in the U. S.
http://www.alldaychemist.com/asacol.html
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.
I have used this company for things other than entocort and have found them very good. I place an order, they call to verify my payment (I do an e-check which sometimes gives me a further discount), they then call at least once again to verify my order, I receive an email that my order has been shipped and I usually get my order within 10 days. In fact, I just received an order yesterday. I figure the e-check is no different than sending them a check as they have my routing and account number either way. Deb
-
Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
G'day from Aus
Be prepared for a bit more rough and tough as you figure out what works best for you.
There is no quick fix or guaranteed to work solution. What works for some doesn't work for others, so it is a case of trial and error persay, there is no right way or wrong way, there is your way.
Have faith that you can figure this out, and improve wellness and quality of life, with the support of this wonderful bunch of people.
Take care
We hear ya!! Many here have traversed a rough, long constantly testing road, and there are some that get stuck in the rough stuff almost permanently.This has been a tough road
Be prepared for a bit more rough and tough as you figure out what works best for you.
There is no quick fix or guaranteed to work solution. What works for some doesn't work for others, so it is a case of trial and error persay, there is no right way or wrong way, there is your way.
Have faith that you can figure this out, and improve wellness and quality of life, with the support of this wonderful bunch of people.
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
Thanks for the supportive words Gabes Ryan. I have been a bit down feeling like my body is completely out of control. But tomorrow I have a dr appointment and am very anxious to hear her response to my many questions about gluten, Enterolabs, mast cells, etc. I am hoping that we can have an intelligent discussion about new directions because my current drug route is not working at all. Wish me luck!
.jpg){kind=avatar}
I hope your doctor is responsive to you but don't be surprised if she isn't. What we suggest on this forum is contrary to what most doctors believe. The good news is that you do not need your doctors permission to change your diet. or to order the Enterolab testing, although the money may have to come out of your pocket rather than the insurance company's. What you eat is entirely in your control. I wish you luck with your doctor but more than that I wish you the fortitude to go your own route if you find that your doctor has little to nothing to offer. We are warned against getting advice off the internet but in this case the advice you get here is much better than what most doctors can offer.WWWB wrote:Thanks for the supportive words Gabes Ryan. I have been a bit down feeling like my body is completely out of control. But tomorrow I have a dr appointment and am very anxious to hear her response to my many questions about gluten, Enterolabs, mast cells, etc. I am hoping that we can have an intelligent discussion about new directions because my current drug route is not working at all. Wish me luck!
Jean
Hi WWWB,
Welcome, I totally get where you are coming from. I joined this group in Sept. And had a hard time keeping my spirits up and being patient while my body made what seemed like forever to make adjustments and heal. I researched what these people said and went through with the Panels A and C from Endolabs. I knew gluten had to go but I was surprised to find out that cassein (dairy) and soy had to get the boot too. The road was bumpy from early Nov. (after lab results came in) to mid January, but things have smoothed out and I am so much better. I am off Endocort and managing OK without it now. I have accepted the restrictions and slowly it has become "no big deal." Good luck. Listen to the experienced people here for suggestions and have faith....Things do get better.
Jean
Welcome, I totally get where you are coming from. I joined this group in Sept. And had a hard time keeping my spirits up and being patient while my body made what seemed like forever to make adjustments and heal. I researched what these people said and went through with the Panels A and C from Endolabs. I knew gluten had to go but I was surprised to find out that cassein (dairy) and soy had to get the boot too. The road was bumpy from early Nov. (after lab results came in) to mid January, but things have smoothed out and I am so much better. I am off Endocort and managing OK without it now. I have accepted the restrictions and slowly it has become "no big deal." Good luck. Listen to the experienced people here for suggestions and have faith....Things do get better.
Jean
Everything will be ok in the end, if it's not ok, it's not the end.
I didn't have much luck on asacol either. I'm currently weaning off entocort and it runs over $1,000 to get it filled (without insurance coverage). Crazy.
Deb
"Do not follow where the path may lead. Go instead, where there is no path, and leave a trail.
-Ralph Waldo Emerson
2007 CC
2013 thyroid cancer- total thyroidectomy
2013 Hashimoto's - numbers always "normal"
2017 Lyme's Disease
"Do not follow where the path may lead. Go instead, where there is no path, and leave a trail.
-Ralph Waldo Emerson
2007 CC
2013 thyroid cancer- total thyroidectomy
2013 Hashimoto's - numbers always "normal"
2017 Lyme's Disease
Thanks everyone. My doc and I had a good conversation and she acknowledged that what I was saying is very controversial. She recommended that I also eliminate hot foods (stab in the heart) and get some standard blood tests and try entocort, which I am willing to do. Of course I hope that the drug route works because, in truth, I really don't want to change my diet. I just got Tex's book in the mail so I will pore over it knowing it may hold the key to my recovery. One day at a time....
Very wishful thinking to hope that the drug will work ( long term) without diet changes. What usually will happen with Entocort, is that you will feel better as long as you are on it ( if it works for you), but when you wean off of it, all your symptoms will slowly ( or quickly) come back simply because you haven't addressed any foods that you may be having an inflammatory response to. Also, unfortunately with this drug, many of us have discovered that with every subsequent try to go back on the drug after a relapse, it doesn't work as well as the time before.
We all have to make our own decisions, so I hope that after you read the book, you make some wise ones.
Good luck and keep us posted on your progress
Leah
We all have to make our own decisions, so I hope that after you read the book, you make some wise ones.
Good luck and keep us posted on your progress
Leah
This is my first post... Here goes.... I was diagnosed June 2012 with type 2 diabetes. I took metformin 4 months, cut all sugar out of my diet(except fruit). Lost 48lbs in 6 mths. I now weigh 133lbs. take no meds,do well on my diet& exercise daily. Was laid off my job August 2013 after 32 yrs.... Depressed& Drank much coffee at home & ate too many diabetic candies. Oct 2013 the diarrhea(10-15xday)began. Jan 9th I started taking Metamucil. Jan.23/2014 I had colonoscopy. Feb 25 I got diagnosis of microscopic colitis. Doc was no help except to suggest I take pepto bismol for diarrhea and to call him if symptom didn't resolve he could prescribe meds. I have recently taken myself off sugar,alcohol,artificial sweetener, gluten,dairy, soy, fruit, coffee,tea &spices. I'm eating poached egg whites & gluten free oatmeal for breakfast with almond milk. Meat&white rice for lunch. Supper is salad,meat and white rice or Occasional potato & steamed veg. I take 3 capsules Metamucil with each meal. I am almost finished a one month stint on Ultimate Flora 80billion probiotic Colon Care. I'm hoping now that I have eliminated more from diet this week BM will consistently have some form. Today I cut out salads. I'm gonna miss my salads! I am down to 2-6 BM per day with little or no form. I have occasional days of normalcy mixed in with days of runs. That's what brought me to your sight in hopes of finding suggestions of what I'm eating that is causing my runs. I am trying to be patient as I know my gut is gonna take time to heal but as a diabetic nutrition is crucial ! Thanks for your help.hugs