Newly diagnosed and confused
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Newly diagnosed and confused
Hello everyone! As one who was always enjoyed great health, I find myself struggling with this "monkey on my back." After 3 months of D, I was diagnosed with MC (Collagenous Colitis). Have been on 60 mg Prednisone for one week + 5 days at 50 mg and symptoms are starting to improve. I am not yet sure about what I can eat although know that certain foods make me feel really sick. I was only told to avoid fat, spices and fiber. The doctor is now talking about putting me on Purinethol and I have just found out this is a cancer drug. I am quite scared and confused about the whole situation. Does anyone know about Purinethol?
DMarcus. You have found the best place in the world for MC information and support.Tex may be able to answer your question. I don't remember hearing about that drug in my 2 years as a PP. You can do a PP search as will I after I finish writing this.
If you read the info for newbies, you'll find that Entocort is the drug the is most often used to treat MC. Some of us use diet alone to control the the D. We eliminate gluten first, casein (the protein in dairy) second and about half of us have to eliminate soy. Some others have to eliminate more. There are some PP who do not react to gluten.
Was MC your only diagnosis?
Read as much as you can here and at www.finerhealth.com and or www.enterolab.com
As Tex says, you can get your life back.
DISCLAIMER: I am not a doctor and don't play one on TV.
LDN July 18, 2014
Joan
LDN July 18, 2014
Joan
This is what I found on the PP for Purinethol
"Thu Feb 28, 2008 8:50 pm Post subject:
I googled 6MP and APC 2059. 6MP is Purinethol and is used for UC like Imuran is used, to get people off steroids. I cannot find where APC 2059 went any further than Phase ll clinical trial. Doesn't look like the side effects of Purinethol are any better than Imuran. I'm really at the doctor's mercy. I can ask though.
Pat"
I googled 6MP and APC 2059. 6MP is Purinethol and is used for UC like Imuran is used, to get people off steroids. I cannot find where APC 2059 went any further than Phase ll clinical trial. Doesn't look like the side effects of Purinethol are any better than Imuran. I'm really at the doctor's mercy. I can ask though.
Pat"
DISCLAIMER: I am not a doctor and don't play one on TV.
LDN July 18, 2014
Joan
LDN July 18, 2014
Joan
Hi,
Welcome aboard.
Frankly, your doctor scares the crap out of me. First he, (or she), starts you out on Prednisone, (which is plenty bad enough), and then he, (or she), wants you to move on to Purinetol next?
Either he, (or she), doesn't care what happens to his, (or her), patients, or he/she is nuts.
Unless I had leukemia, or lymphoma, I wouldn't even consider touching Purinetol with anything shorter than a 10-foot pole. The problem with that drug, (and many of the "big gun" drugs, is that not only does it destroy the cancer cells, (which you do not have), but it affects normal cells as well. Since you don't have any cancer cells, what type of cells do you think it will affect/destroy? The dietary advice to avoid fat, spices, and fiber was basically correct, as far as it goes, but his/her recommendations for medications to use to treat MC, totally suck.
IMO, you desperately need a new GI doc, or else you should at the very least, stay as far away from the one you have, as you possibly can, and go to your PCP, and see if he or she will write you a prescription for Entgocort EC, if you want to take a drug to control your symptoms. If you don't want to take a drug, you can control the disease by diet modifications, as many of us here, have done, as Joan mentioned, above. Diet is obviously the safest treatment. The most effective treatment, (and still relatively safe), of course, is a combination of diet changes and Entocort EC.
Again welcome to the group, and please feel free to ask anything.
Tex
Welcome aboard.
Frankly, your doctor scares the crap out of me. First he, (or she), starts you out on Prednisone, (which is plenty bad enough), and then he, (or she), wants you to move on to Purinetol next?
Either he, (or she), doesn't care what happens to his, (or her), patients, or he/she is nuts.Unless I had leukemia, or lymphoma, I wouldn't even consider touching Purinetol with anything shorter than a 10-foot pole. The problem with that drug, (and many of the "big gun" drugs, is that not only does it destroy the cancer cells, (which you do not have), but it affects normal cells as well. Since you don't have any cancer cells, what type of cells do you think it will affect/destroy? The dietary advice to avoid fat, spices, and fiber was basically correct, as far as it goes, but his/her recommendations for medications to use to treat MC, totally suck.
IMO, you desperately need a new GI doc, or else you should at the very least, stay as far away from the one you have, as you possibly can, and go to your PCP, and see if he or she will write you a prescription for Entgocort EC, if you want to take a drug to control your symptoms. If you don't want to take a drug, you can control the disease by diet modifications, as many of us here, have done, as Joan mentioned, above. Diet is obviously the safest treatment. The most effective treatment, (and still relatively safe), of course, is a combination of diet changes and Entocort EC.
Again welcome to the group, 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.
Dear DMarcus
from Hong Kong. My goodness, I totally agree with Tex, you GI doc sounds dangerous. Do try and get a second opinion about your meds. The phrase "sledgehammer to crack a nut" comes to mind.
There is lots of great knowledge and understanding here. In fact it is the most comprehensive knowledge bank about MC anywhere on this planet.
Wishing you all the best on your journey to remission, Ant
from Hong Kong. My goodness, I totally agree with Tex, you GI doc sounds dangerous. Do try and get a second opinion about your meds. The phrase "sledgehammer to crack a nut" comes to mind. There is lots of great knowledge and understanding here. In fact it is the most comprehensive knowledge bank about MC anywhere on this planet.
Wishing you all the best on your journey to remission, Ant
Welcome DMarcus,
I agree with the others - there are better ways to treat this. Have you explored diet yet? Most of us ar on a gluten free diet, as well as dairy free and soy free. There's lots of good diet info on tis site - take some time and look at old posts.
Good luck and welcome aboard.
Mary Beth
I agree with the others - there are better ways to treat this. Have you explored diet yet? Most of us ar on a gluten free diet, as well as dairy free and soy free. There's lots of good diet info on tis site - take some time and look at old posts.
Good luck and welcome aboard.
Mary Beth
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Joefnh
- Rockhopper Penguin
- Posts: 2478
- Joined: Wed Apr 21, 2010 8:25 pm
- Location: Southern New Hampshire
Welcome DMarcus
I fully agree with Tex, find a new GI doctor. First the use of prednisone, which is a systemic steroid will help, but there is a much better and widely used alternative called Entocort. Entocort is also a steroid but it is designed to mostly stay in the GI tract with only about 10 - 15% of the steroid actually making it into the rest of the body; this is far better than using prednisone.
Depending on the individual, and how severe the symptoms, many of the members on this site have used diet alone to control MC successfully. I would certainly look into finding out which dietary items might be aggravating the MC symptoms that you have. Most of us seem to be sensitive to gluten (wheat) which is in almost all breads pastas etc, soy and for some dairy.
I cannot believe the use of Purinethol for the control of MC. The phrase that comes to mind is "To use a cannon to kill a mosquito" Unfortunately you are the mosquito in this case. No the med won't kill you (too quickly) but there are many other less toxic choices that are more than effective.
I would get a full copy of your records including any pathology reports and find another GI doctor ASAP. I cannot see the logic for his choice of treatment.
Best wishes
--Joe
I fully agree with Tex, find a new GI doctor. First the use of prednisone, which is a systemic steroid will help, but there is a much better and widely used alternative called Entocort. Entocort is also a steroid but it is designed to mostly stay in the GI tract with only about 10 - 15% of the steroid actually making it into the rest of the body; this is far better than using prednisone.
Depending on the individual, and how severe the symptoms, many of the members on this site have used diet alone to control MC successfully. I would certainly look into finding out which dietary items might be aggravating the MC symptoms that you have. Most of us seem to be sensitive to gluten (wheat) which is in almost all breads pastas etc, soy and for some dairy.
I cannot believe the use of Purinethol for the control of MC. The phrase that comes to mind is "To use a cannon to kill a mosquito" Unfortunately you are the mosquito in this case. No the med won't kill you (too quickly) but there are many other less toxic choices that are more than effective.
I would get a full copy of your records including any pathology reports and find another GI doctor ASAP. I cannot see the logic for his choice of treatment.
Best wishes
--Joe
Joe
Newly diagnosed
Joan, Tex, Ant, Mary Beth and Joe... thank you so very much! This is hugely helpful!
I have just requested an ASAP meeting with the doctor in question to sit down and discuss his course of action. It is now clear to me that a more organized and gentle approach is badly needed. When I first met with him, he gave me Turmeric while conducting blood and stool tests. He also had some sort of breathing test done which consisted in blowing in little baggies for 2 hours. Since Turmeric did nothing, he put me on Colazal (3X3) and this made me feel actually worse and very tired. I stayed on Colazal for 3 weeks while visiting my family in Europe. (Actually the trip was extremely stressful -- as you can imagine). I am now on Prednisone (50mg trying to taper off since I am starting to feel better and Prednisone freaks me out). However, the Purinethol suggestion really scared me when I researched it.
I feel that I need to come down to earth, regroup, make sure the diagnosis is accurate and, if so, follow a more gentle course of action. The information on this forum is, I believe, invaluable and I am going to spend the time and read.
Again, Thank you everyone!
Diane
I have just requested an ASAP meeting with the doctor in question to sit down and discuss his course of action. It is now clear to me that a more organized and gentle approach is badly needed. When I first met with him, he gave me Turmeric while conducting blood and stool tests. He also had some sort of breathing test done which consisted in blowing in little baggies for 2 hours. Since Turmeric did nothing, he put me on Colazal (3X3) and this made me feel actually worse and very tired. I stayed on Colazal for 3 weeks while visiting my family in Europe. (Actually the trip was extremely stressful -- as you can imagine). I am now on Prednisone (50mg trying to taper off since I am starting to feel better and Prednisone freaks me out). However, the Purinethol suggestion really scared me when I researched it.
I feel that I need to come down to earth, regroup, make sure the diagnosis is accurate and, if so, follow a more gentle course of action. The information on this forum is, I believe, invaluable and I am going to spend the time and read.
Again, Thank you everyone!
Diane
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Joefnh
- Rockhopper Penguin
- Posts: 2478
- Joined: Wed Apr 21, 2010 8:25 pm
- Location: Southern New Hampshire
Dianne I'm glad that you will be dealing with the medication choices directly with your doctor, don't be afraid to get a second opinion. I am concerned that this doctor really chose some less than ideal meds as the first line of treatment.
Since the doctor only addressed the dietary part of this disease with the restriction list that is generally used for irritable bowel syndrome, I would think that this doctor may not be informed about MC and the treatments overall. I cannot say this enough, the dietary aspect of managing this disease is as important as the medications.
I am currently taking Entocort 9mg a day which has helped quite a bit, but a restrictive diet free of gluten, soy, dairy and very low yeast has helped even more. I only started taking the Entocort in that my symptoms came on so suddenly that I could not retain any food for close to a month.
Overall everyone is different in what they can tolerate but most of us have found that gluten is the big offender with soy and dairy troubling most of us as well.
There are several very informed individuals on this site including at least 2 physicians that I know of. Don't be afraid to ask any question or address any topic. Fortunately nothing is too gross here...
♦
--Joe
Since the doctor only addressed the dietary part of this disease with the restriction list that is generally used for irritable bowel syndrome, I would think that this doctor may not be informed about MC and the treatments overall. I cannot say this enough, the dietary aspect of managing this disease is as important as the medications.
I am currently taking Entocort 9mg a day which has helped quite a bit, but a restrictive diet free of gluten, soy, dairy and very low yeast has helped even more. I only started taking the Entocort in that my symptoms came on so suddenly that I could not retain any food for close to a month.
Overall everyone is different in what they can tolerate but most of us have found that gluten is the big offender with soy and dairy troubling most of us as well.
There are several very informed individuals on this site including at least 2 physicians that I know of. Don't be afraid to ask any question or address any topic. Fortunately nothing is too gross here...
♦
--Joe
Joe
Joe,
I suspect that you may have misread her doctor's dietary recommendations. He suggested that she avoid fiber. That's contrary to conventional recommendations, regarding IBS treatments, (and, of course, it's a correct recommendation for treating MC) - an observation that most GI docs are totally unaware of. And, turmeric is a proven "natural" anti-inflammatory for treating IBDs.
Because of those facts, (and other clues), I get the impression that he does indeed understand MC better than most GI docs, (he recognizes it as a major, debilitating disease), rather than as a "nuisance" disease, the way that most GI specialists view it, (but I do obviously agree with you that his treatment hierarchy leaves a lot to be desired). I don't question his familiarity with the disease, I just think that he is pretty aggressive with his treatment regimen, (although the updated information that he had previously prescribed Colazal, with no success), certainly tempers my opinion of his approach, somewhat.
Maybe his problem is that he doesn't understand how Entocort EC works. He may consider budesonide and prednisolone to be equivalent corticisteroids, and they most certainly are not.
Diane,
When you meet with him, please ask if he would be willing to prescribe a course of Entocort EC, (in lieu of any other medications), for a while, to give your gut some time to heal. Entocort is basically just as effective as Prednisone, for treating the IBDs, except that it does not carry anywhere near the risk of Draconian side effects, as Joe mentioned, previously. If you will begin the diet, then eventually, you should be able to taper off the Entocort EC, and maintain remission by diet alone. If you are reluctant to adopt the diet, then you would probably require a maintenance dose of Entocort, for an indefinite period. The point is, Entocort is a much safer drug than what you are taking now, and what he is currently proposing. At maintenance dosage levels, Entocort has been proven safe to use for long-term treatment, (unlike the other corticosteroids).
The point is, without the proper diet changes, the drugs will temporarily relieve the inflammation, and thereby stop the symptoms, but as soon as the drugs are discontinued, the inflammation will return, (if you continue to eat the foods that you are sensitive to), and you will promptly relapse. Most GI docs don't recognize that food sensitivities are the cause of the inflammation, with MC. They incorrectly think that they can "cure" the disease, with a drug regimen.
Tex
I suspect that you may have misread her doctor's dietary recommendations. He suggested that she avoid fiber. That's contrary to conventional recommendations, regarding IBS treatments, (and, of course, it's a correct recommendation for treating MC) - an observation that most GI docs are totally unaware of. And, turmeric is a proven "natural" anti-inflammatory for treating IBDs.
Because of those facts, (and other clues), I get the impression that he does indeed understand MC better than most GI docs, (he recognizes it as a major, debilitating disease), rather than as a "nuisance" disease, the way that most GI specialists view it, (but I do obviously agree with you that his treatment hierarchy leaves a lot to be desired). I don't question his familiarity with the disease, I just think that he is pretty aggressive with his treatment regimen, (although the updated information that he had previously prescribed Colazal, with no success), certainly tempers my opinion of his approach, somewhat.
Maybe his problem is that he doesn't understand how Entocort EC works. He may consider budesonide and prednisolone to be equivalent corticisteroids, and they most certainly are not.
Diane,
When you meet with him, please ask if he would be willing to prescribe a course of Entocort EC, (in lieu of any other medications), for a while, to give your gut some time to heal. Entocort is basically just as effective as Prednisone, for treating the IBDs, except that it does not carry anywhere near the risk of Draconian side effects, as Joe mentioned, previously. If you will begin the diet, then eventually, you should be able to taper off the Entocort EC, and maintain remission by diet alone. If you are reluctant to adopt the diet, then you would probably require a maintenance dose of Entocort, for an indefinite period. The point is, Entocort is a much safer drug than what you are taking now, and what he is currently proposing. At maintenance dosage levels, Entocort has been proven safe to use for long-term treatment, (unlike the other corticosteroids).
The point is, without the proper diet changes, the drugs will temporarily relieve the inflammation, and thereby stop the symptoms, but as soon as the drugs are discontinued, the inflammation will return, (if you continue to eat the foods that you are sensitive to), and you will promptly relapse. Most GI docs don't recognize that food sensitivities are the cause of the inflammation, with MC. They incorrectly think that they can "cure" the disease, with a drug regimen.
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.
Joe,
Maybe GI docs are changing their thinking about recommending fiber for IBS.
I've always questioned the wisdom of that claim.
Traditionally, a diet with increased fiber was a mainstay of "official" recommendations for treating IBS. (But does it actually work for anyone with IBS?)
Tex
Maybe GI docs are changing their thinking about recommending fiber for IBS.
I've always questioned the wisdom of that claim.Traditionally, a diet with increased fiber was a mainstay of "official" recommendations for treating IBS. (But does it actually work for anyone with IBS?)
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.
Newly diagnosed
Thank you Tex and Joe! I feel I am now armed with some good knowledge and feel that I can now logically discuss a plan of action with the GI (hopefully Entecort after Prednisone). Before reading your forum, I did not even know that this disease was really a chronic situation! I can understand that the GI is trying to stop the high level inflammation with Prednisone (after failing with Colazal) but I also understand that it is a life-style change that I need to contemplate while making new careful dietary choices.
Diane
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Diane
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Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Diane
gday from australia
one of the key elements to 'beating' the MC demon is self management. research treatment options, do back ground checks on any meds the doctor or specialist recommends, and look at the long term effects.
there is no right way or wrong way - there is what works for you.
figuring that out may take time, so take a deep breath and get ready for a bit of a journey.
you have to make decisions on the treatement elements how it works best for you
- lifestyle (home, family, work)
- monetary (doing what you can afford)
- acceptance (doing things that you are 100% accepting of)
There are lots of wise wonderful caring people on this site.
as Tex told me 7 months ago 'you will get your life back' and i reiterate this statement!
take care
good luck and we are there on the journey with you
gday from australia
one of the key elements to 'beating' the MC demon is self management. research treatment options, do back ground checks on any meds the doctor or specialist recommends, and look at the long term effects.
there is no right way or wrong way - there is what works for you.
figuring that out may take time, so take a deep breath and get ready for a bit of a journey.
you have to make decisions on the treatement elements how it works best for you
- lifestyle (home, family, work)
- monetary (doing what you can afford)
- acceptance (doing things that you are 100% accepting of)
There are lots of wise wonderful caring people on this site.
as Tex told me 7 months ago 'you will get your life back' and i reiterate this statement!
take care
good luck and we are there on the journey with you
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
