Visit the Microscopic Colitis Foundation Website
I was recently 'diagnosed' with Collagenous Colitis but my GI wants a second opinion of the biopsies. This is not because the biopsies were not positive for the disease - they were, but for the fact "That so Few Men Have This Disease". He will not start treatment (Entocort) until the results return in another - 3 weeks AARRGGHH. Not to mention the symptoms are textbook
Sorry about the rant, I am just feeling so miserable during this flare and to know that you 'have' the diagnosis but treatment is being withheld because they cannot believe their eyes astounds me. I do have pain meds etc. but they are a poor substitute for proper treatment at best.
This site has been great for the information and I'm not sure how I would make it through this without all of the friendly people here
Take Care and thanks to all for your responses
--Joe
Help I am Going Nuts - Waiting For Treatment
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
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Gabes-Apg
- Emperor Penguin
- Posts: 8367
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Joe
do you have a good GP? is it worth taking the results and your knowledge from this site and talking to your GP about any meds you might consider using
if you have read the posts on this site, majority of us have had issues with Specialists and GP's. They have limited knowledge of this condition and not very many will accept or acknowledge diet as a key management tool.
Self management is the key to success for this demon, it is your body, your life, you have to make the decisions that suit your lifestyle and get quality of life. (work/family/budget etc)
Rant away - this is the place to do it!
do you have a good GP? is it worth taking the results and your knowledge from this site and talking to your GP about any meds you might consider using
if you have read the posts on this site, majority of us have had issues with Specialists and GP's. They have limited knowledge of this condition and not very many will accept or acknowledge diet as a key management tool.
Self management is the key to success for this demon, it is your body, your life, you have to make the decisions that suit your lifestyle and get quality of life. (work/family/budget etc)
Rant away - this is the place to do it!
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Joe,
I have some bad news for you - your GI doc is either an alien from outer space, or he lives in a cave, somewhere way back in the hills, with very little contact with the outside world.
Or maybe he's just a little nutty. 
This board has many members who are men, (including at least one who is an MD), and their diagnosing GI docs never questioned their qualifications for receiving treatment. If I were in your shoes, I would try Gabes' suggestion, and ask your PCP for a prescription to Entocort, while you ask him or her for a recommendation for a new GI doc. Your current GI doc apparently knows less about MC, than your dog, (if you have a dog). Unfortunately, though, dogs are not allowed to write prescriptions, so that's why you need another GI doc.
Sorry to hear that your GI doc has chosen to punish you because of his ignorance. That totally sucks. I feel sorry for him, because he obviously has no confidence at all, in his ability to treat you - another good reason to switch GI docs, ASAP.
Tex
I have some bad news for you - your GI doc is either an alien from outer space, or he lives in a cave, somewhere way back in the hills, with very little contact with the outside world.
Or maybe he's just a little nutty. This board has many members who are men, (including at least one who is an MD), and their diagnosing GI docs never questioned their qualifications for receiving treatment. If I were in your shoes, I would try Gabes' suggestion, and ask your PCP for a prescription to Entocort, while you ask him or her for a recommendation for a new GI doc. Your current GI doc apparently knows less about MC, than your dog, (if you have a dog). Unfortunately, though, dogs are not allowed to write prescriptions, so that's why you need another GI doc.
Sorry to hear that your GI doc has chosen to punish you because of his ignorance. That totally sucks. I feel sorry for him, because he obviously has no confidence at all, in his ability to treat you - another good reason to switch GI docs, ASAP.
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.
if I haven't welcomed you previously. Have you gone gluten free, yet?-
Joefnh
- Rockhopper Penguin
- Posts: 2478
- Joined: Wed Apr 21, 2010 8:25 pm
- Location: Southern New Hampshire
Tex I agree. After posting this I did call my PCP. He was upset that the GI doc was waiting and immediately called in Entocort 9mg a day (3x 3mg pills) each morning for 3 months. I agree its time to look for a new GI. Of course I just started going to him, but this does not bode well.
My pharmacy is charging me $25.00 for a 90 day supply (270 pills) isn't that kind of expensive?
Fortunately I do have a dog.. a wonderful empathetic female golden retriever Nestle. This dog is definitely one of Gods finer creatures. I call her Nurse Nestle
Thanks for the encouraging posts, I am not gluten free yet but am starting to learn about this. I did find a good book titled "The Makers Diet" which covers this topic quite well.
Thanks again. I will be taking the Entocort 9mg this evening for the first time
--Joe
My pharmacy is charging me $25.00 for a 90 day supply (270 pills) isn't that kind of expensive?
Fortunately I do have a dog.. a wonderful empathetic female golden retriever Nestle. This dog is definitely one of Gods finer creatures. I call her Nurse Nestle
Thanks for the encouraging posts, I am not gluten free yet but am starting to learn about this. I did find a good book titled "The Makers Diet" which covers this topic quite well.
Thanks again. I will be taking the Entocort 9mg this evening for the first time
--Joe
Joe,
Good for your PCP. He obviously cares about his patients.
Actually, $25 for a 90-day supply of Entocort, is extremely cheap. You must have good insurance. That's several thousands of dollars worth of Entocort, believe it or not, (from roughly $1,500 to over $2,500, depending on where you buy it), in this country.
Tex
Good for your PCP. He obviously cares about his patients.
Actually, $25 for a 90-day supply of Entocort, is extremely cheap. You must have good insurance. That's several thousands of dollars worth of Entocort, believe it or not, (from roughly $1,500 to over $2,500, depending on where you buy it), in this country.
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.
Gabes,
You're right, of course - it was rather inconsiderate of me to compare that GI doc with our canine friends, and I do apologize to the dogs of the world, but you will notice that I did place more value in the dog's knowledge and compassion then the GI doc at issue here. Unfortunately, of course, the medical lobby has been quite successful in getting laws passed that make it illegal for dogs to practice medicine, anywhere in the world, so they have managed to keep both us, and dogs, behind the 8-ball.
Tex
You're right, of course - it was rather inconsiderate of me to compare that GI doc with our canine friends, and I do apologize to the dogs of the world, but you will notice that I did place more value in the dog's knowledge and compassion then the GI doc at issue here. Unfortunately, of course, the medical lobby has been quite successful in getting laws passed that make it illegal for dogs to practice medicine, anywhere in the world, so they have managed to keep both us, and dogs, behind the 8-ball. 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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Joefnh
- Rockhopper Penguin
- Posts: 2478
- Joined: Wed Apr 21, 2010 8:25 pm
- Location: Southern New Hampshire
Tex Endocort is that much!! - wow.
Overall MIT has been very good to me; plus its a good place to work.
Thanks to all on this site you are making this a lot more bearable.
I took my first dose of the Entocort tonight, so far I seem to tolerate it well
Nestle will be sad (no dogs in medicine)...she has been studying for her RN... lol
--Joe
Overall MIT has been very good to me; plus its a good place to work.
Thanks to all on this site you are making this a lot more bearable.
I took my first dose of the Entocort tonight, so far I seem to tolerate it well
Nestle will be sad (no dogs in medicine)...she has been studying for her RN... lol
--Joe
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Gabes-Apg
- Emperor Penguin
- Posts: 8367
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
in the MC family, you dont need formal qualifications.....
I am not a old timer of this family but i think sharing knowledge,and a kind and generous heart is the only pre-requisite, from the sound of it, nurse nestle meets that criteria
fingers and toes crossed that you see improvement in the short term
I am not a old timer of this family but i think sharing knowledge,and a kind and generous heart is the only pre-requisite, from the sound of it, nurse nestle meets that criteria
fingers and toes crossed that you see improvement in the short term
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Welcome Joe,
I pay $50 for a 180 pill supply of Entocort. My insurance plan pays the remaining $1756.76, meaning it costs about $10 a pill. I have never had any side effects from using it. It can take up to 4 weeks to see any improvement, but once it works, it is very effective.
I hope you begin to feel better soon.
Gloria
I pay $50 for a 180 pill supply of Entocort. My insurance plan pays the remaining $1756.76, meaning it costs about $10 a pill. I have never had any side effects from using it. It can take up to 4 weeks to see any improvement, but once it works, it is very effective.
I hope you begin to feel better soon.
Gloria
You never know what you can do until you have to do it.
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MaggieRedwings
- King Penguin
- Posts: 3865
- Joined: Tue May 31, 2005 3:16 am
- Location: SE Pennsylvania
Welcome Joe.
You have a great Rx policy if you only have to pay $25. Tex and Gloria are totally correct in the estimated cost of this med. I took it but unfortunately had to stop due to some side effects of the drug.
Nestle and your wife are gorgeous and ditch your GI - he is definitely not what you need. Congrats to your PCP - he/she is a keeper.
Maggie
You have a great Rx policy if you only have to pay $25. Tex and Gloria are totally correct in the estimated cost of this med. I took it but unfortunately had to stop due to some side effects of the drug.
Nestle and your wife are gorgeous and ditch your GI - he is definitely not what you need. Congrats to your PCP - he/she is a keeper.
Maggie
Maggie Scarpone
___________________
Resident Birder - I live to bird and enjoy life!
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Resident Birder - I live to bird and enjoy life!
Dear Joe
Welcome!!! As one of the men on this board let me raise the BS flag to your current GI
Conventional "wisdom" also thinks MC is for "older" people. Well, there seems to be more and more young people joining this board Dx with MC. So certain conventional GIs may soon have to rethink that myth too. (By-the-way everyone on this board is young 'cos (led by young Tex) we have attitude and open minds and do not stop learning and listening to all).
All the best, Ant
Welcome!!! As one of the men on this board let me raise the BS flag to your current GI
Conventional "wisdom" also thinks MC is for "older" people. Well, there seems to be more and more young people joining this board Dx with MC. So certain conventional GIs may soon have to rethink that myth too. (By-the-way everyone on this board is young 'cos (led by young Tex) we have attitude and open minds and do not stop learning and listening to all).
All the best, Ant