Well Tex- If I have to have a colonoscopy I guess I will. I'm probably overly concerned.
I saw my doctor today. He has written me a prescription for sulfasalazine. He says to try that first, for inflammation and swelling. In the meantime, they are booking me appointments for an allergist and a GI doctor - as I have to fly south to Vancouver for those- I probably won't see anyone until sept or october they say (as they need to book them close together due to the trip involved). I showed my doctor the info on a higher risk of colon splitting with CC- so he said he prefered I'd have another, but would still book the appt with the GI doctor without it. His nurse told me that they can do it there if they really want one anyway. SO because of the drugs- I'm off Boswellin for now on the advice of the pharmacist ( during the pharmacist consultation when filling the drug- she went through all my vitamins and herbs that I take normally, letting me know which are ok, and which to stay away from while taking the drug)- blaah. They are also testing me for some basic allergins in foods here. I go tomorrow for that, but will see the specialist in Vancouver. So we'll see. Maybe I'll consider the colonoscopy . I can let him know when I return to see him about that I guess.
Do you guys think I should do it? Am I being overly concerned about it- is it even necessary in order to proceed with treatment?
Jeeze- I sure do appreciate all of you kindly helping me out - I mean really- there's no one who you can talk to about this - it's not exactly a comfortable topic for most people!
Mia
please give me advice/very confused
Moderators: Rosie, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Well, if you have a valid diagnosis of CC, made by a pathologist who examined your biopsy sides under a microscope, that diagnosis is not going to change - you will always have CC. Of course, you could develop some other disease, but while that is possible, it's a very low probability. Some GI docs still consider CC and LC to be rare diseases, and they doubt the validity of anyone else's diagnoses - they want to see for themselves. There are also GI docs who believe that the disease will go away on it's own after several years, and they are always trying to verify that with a colonoscopy, but doctors who have that attitude are usually inexperienced in treating the disease, and don't know what they're doing.Mia wrote:Do you guys think I should do it? Am I being overly concerned about it- is it even necessary in order to proceed with treatment?
Soooooo, whether or not you need another colonoscopy depends on why the doctor wants to do the exam. What is he searching for? If he suspects something new - OK. If he's still hung up on your original CC diagnosis, though, then another colonoscopy would probably be a waste of time and money.
No, it's not necessary to do another colonoscopy in order to proceed with treatment, because what could they find that would change the treatment? CC is not going to go away, so it is still there. If you have somehow developed another type of IBD, then the treatment is still the same, regardless of the diagnosis. UC would require a slightly different approach to delivering the treatment, but the drugs would be the same, and unless you are passing blood, it is not likely that you have developed another type of IBD, anyway, so probably, nothing has significantly changed.
On the other hand, from a practical consideration, if you haven't had a colonoscopy in roughly 10 years, then it's not unrealistic for a GI doc to request another colonoscopy, in order to evaluate any changes that have taken place, over that many years. Also, depending on your age, and family history, cancer screening might, or might not be a consideration. Ultimately, though, whether or not to have another colonoscopy exam, is your decision.
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.
Thanks Tex! You have a real skill for thinking things through clearly and precisely. I haven't had any bleeding- just the same old pattern/cycles. The meds seem to be working already- the churning/gurgling has gone/ I slept pretty comfortably last night. Is that possible after only one dose???
Hmm.
Mia
Hmm.
Mia
Some of us respond very quickly to meds - we're all different in that respect. Let's hope that your progress continues.
Good luck with this.
Tex
Good luck with this.
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, all.
I'm a newbie and confused. Just diagnosed with LC last week and put on Pentasa 500mgs tds by the consultant. Terminology and names of meds may be different as I'm in the UK. Not suffering too badly with up to 4 buts of D per day, no cramping or bloating. Started 4 months ago at the same time as severe flitting arthritic symptoms. No rheumatoid factor.
I have a history of heavy antibiotic therapy, having had complications following hip surgery which involved courses of antibiotics lasting up to 6 months inc. cephalexin and gentamycin(iv). My last antibiotic therapy was not so intensive, just cover when they put my hip back in last November. So my symptoms probably started about 3 months after finishing.
I'm hoping the Pentasa does the trick as we are off to Greece in a couple of weeks' time, going to a beach with no facilities (just the bushes on the hillside! ) But I'm mindful that diet is going to play a part, just don't know where to start and don't know what I can find out in 2 weeks. Also wondering what effect Greek food is likely to have on the LC.
Look forward to hearing your ideas on all this.
Brenda
I'm a newbie and confused. Just diagnosed with LC last week and put on Pentasa 500mgs tds by the consultant. Terminology and names of meds may be different as I'm in the UK. Not suffering too badly with up to 4 buts of D per day, no cramping or bloating. Started 4 months ago at the same time as severe flitting arthritic symptoms. No rheumatoid factor.
I have a history of heavy antibiotic therapy, having had complications following hip surgery which involved courses of antibiotics lasting up to 6 months inc. cephalexin and gentamycin(iv). My last antibiotic therapy was not so intensive, just cover when they put my hip back in last November. So my symptoms probably started about 3 months after finishing.
I'm hoping the Pentasa does the trick as we are off to Greece in a couple of weeks' time, going to a beach with no facilities (just the bushes on the hillside! ) But I'm mindful that diet is going to play a part, just don't know where to start and don't know what I can find out in 2 weeks. Also wondering what effect Greek food is likely to have on the LC.
Look forward to hearing your ideas on all this.
Brenda
Brenda
Hello Brenda welcome on this MC message board. Badyjou have MC too. I have no experience with pentasa, so I can't give you any advice on that. I use budenofalk, another brand of the entocort. A lot of people here use entocort and are doing quite well on it. Most important part in controlling the MC is diet. Most members here are gluten and dairy free, about half is also soy free and a minority is also egg and yeast free. It is possible to get yourself tested for this intolerances. For more information about that first you can take a random look around on this board, quite a view did this testing. You can also go straight to dry fine's website, www.enterolab.com. Dr fine is one of the view researchers that has done research into the field of mc, also he does have MC himself. He is the first scientist that made the connection between MC and gluten.
The Greece diet won't affect in a better or worse way as if you were staying at home. A lot depends on food choice and if you will capable of preparing your own food on holiday.
Despite your MC I hope you will have a great holiday in Greece.
harma
The Greece diet won't affect in a better or worse way as if you were staying at home. A lot depends on food choice and if you will capable of preparing your own food on holiday.
Despite your MC I hope you will have a great holiday in Greece.
harma
Brenda the enterolab testing is a gluten stool test. This specific test is only done by Enterolab in Dallas US. Oversees testing (for example the UK) is possible too, I did it from the Netherlands, other members did it from Spain and Hong Kong. I thought also other members here from the UK did it too. The difference between the regular blood - gluten- celiac test is, is that this stool -gluten -test is much more sensitive. A non-celiac gluten sensitivity is most of the time not picked up by the celiac blood test. That is why Dr Fine developed a stool test.
If your are interested in the diet approach, another thing you could do is eliminate gluten and milk from your diet and see what happens. If you see after a while no improvement, also eliminate the soy.
some choose to deal with this disease with medications alone, other choose to do it with diet alone and also the combination diet and medication is a common choice for a lot of members here.
What's important is, you find a way dealing with this disease where you are comfortable with. This board is very useful for gathering your information, ask your questions (please feel free to ask as many questions as you want, and don't be afraid of asking silly or inappropriate questions), share your experiences and learn from experiences of others.
What I have learned the last year (it is almost a year ago now I got my diagnoses) is that dealing with MC is mainly self management. For most GI docs, MC is a rare disease. My GI sees only 3 MC patients a year. Most of the information of this disease you have to collect yourself. My best source of information (by far) is this board. I have learned so much here. The only thing mainstream medicine have to offer is medication. Here I found out about the diet (gluten, milk, soy), enterolab testing, but also that osteoporoses can be one of the side effects of this disease. And also that it is important to have your vitamin B en D levels checked. My experience is that it is not a lot of work to get these additional tests, only I (and a lot of other members) had to bring it up them selves, just had to ask for it.
Take your time, it takes a while to get used having this disease and finding a way of living and dealing with it.
But again, self management plays a very important role in curing this disease. a 100% recovery (or almost 100%) or at least (almost) symptom free is possible, with the right medication and the right diet.
What I also can advice you, if the pentasa is not working asked your doctor for prescribe you entocort.
harma
If your are interested in the diet approach, another thing you could do is eliminate gluten and milk from your diet and see what happens. If you see after a while no improvement, also eliminate the soy.
some choose to deal with this disease with medications alone, other choose to do it with diet alone and also the combination diet and medication is a common choice for a lot of members here.
What's important is, you find a way dealing with this disease where you are comfortable with. This board is very useful for gathering your information, ask your questions (please feel free to ask as many questions as you want, and don't be afraid of asking silly or inappropriate questions), share your experiences and learn from experiences of others.
What I have learned the last year (it is almost a year ago now I got my diagnoses) is that dealing with MC is mainly self management. For most GI docs, MC is a rare disease. My GI sees only 3 MC patients a year. Most of the information of this disease you have to collect yourself. My best source of information (by far) is this board. I have learned so much here. The only thing mainstream medicine have to offer is medication. Here I found out about the diet (gluten, milk, soy), enterolab testing, but also that osteoporoses can be one of the side effects of this disease. And also that it is important to have your vitamin B en D levels checked. My experience is that it is not a lot of work to get these additional tests, only I (and a lot of other members) had to bring it up them selves, just had to ask for it.
Take your time, it takes a while to get used having this disease and finding a way of living and dealing with it.
But again, self management plays a very important role in curing this disease. a 100% recovery (or almost 100%) or at least (almost) symptom free is possible, with the right medication and the right diet.
What I also can advice you, if the pentasa is not working asked your doctor for prescribe you entocort.
harma
Hi Brenda,
Welcome to the board. Harma is right - there are stool tests available in Europe, (I know that Germany offers them), and there may even be some stool tests available in England, for all I know, but I can guarantee you that their test results will not be accurate, and they will not be reliable, for determining food intolerances. Here is the conclusion from a research project designed to determine the reliability for detecting gluten sensitivity, using two different stool tests available in Europe:
There is only one lab in the world, where accurate, reliable stool tests for food sensitivities are available, and that lab is in Dallas, Texas. Dr. Fine holds the world-wide patents on these tests, and so no other lab can perform these particular tests, unless Dr. Fine should choose to license them to do so. That may not happen, though, because tests such as these require critical operator judgment, and at Enterolab, only one individual does all the testing, and that person holds a PhD. That way, operator judgment is never an issue in the results. The reason why most lab tests at other labs is not repeatable, (not reliable), is because different operators interpret critical steps of various test procedures in a different manner, and so they get different results. That cannot happen at Enterolab. Their accuracy record is the best in the world.
It takes about 3 weeks to get results back, (after the samples are sent to Dallas, TX), so those tests won't do you any good before your trip to Greece, but the test results could certainly simply your life after you return, by removing any question about whether or not you're sensitive to the same foods that most of us are sensitive to.
Again, welcome aboard, and please feel free to ask any questions that come to mind.
Tex (Wayne)
Welcome to the board. Harma is right - there are stool tests available in Europe, (I know that Germany offers them), and there may even be some stool tests available in England, for all I know, but I can guarantee you that their test results will not be accurate, and they will not be reliable, for determining food intolerances. Here is the conclusion from a research project designed to determine the reliability for detecting gluten sensitivity, using two different stool tests available in Europe:
http://www.bmj.com/cgi/content/abstract/332/7535/213Conclusions Neither stool test was suitable for screening for coeliac disease in children with symptoms.
There is only one lab in the world, where accurate, reliable stool tests for food sensitivities are available, and that lab is in Dallas, Texas. Dr. Fine holds the world-wide patents on these tests, and so no other lab can perform these particular tests, unless Dr. Fine should choose to license them to do so. That may not happen, though, because tests such as these require critical operator judgment, and at Enterolab, only one individual does all the testing, and that person holds a PhD. That way, operator judgment is never an issue in the results. The reason why most lab tests at other labs is not repeatable, (not reliable), is because different operators interpret critical steps of various test procedures in a different manner, and so they get different results. That cannot happen at Enterolab. Their accuracy record is the best in the world.
It takes about 3 weeks to get results back, (after the samples are sent to Dallas, TX), so those tests won't do you any good before your trip to Greece, but the test results could certainly simply your life after you return, by removing any question about whether or not you're sensitive to the same foods that most of us are sensitive to.
Again, welcome aboard, and please feel free to ask any questions that come to mind.
Tex (Wayne)
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-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
hi there Brenda
greetings from Australia
Re your questions about Diet and eating. there is no one eating sytle that works or doesnt work. If using diet as your main management tool, you will find that you will adapt your meals to suit what ingredients work best.
there are things like Gluten and Yeast hidden in all sorts of items. In Australia it was quite difficult for me to find a balsomic vinegar that does not have wheat or gluten. I have also found that i dont tolerate olive oil or grapeseed oil very well, so use only rice bran oil.
Accepting the MC diagnosis is a big thing, the next big thing is adapting aspects of your life to live with MC.
Using diet management will most likely mean you have to say goodbye to some of your favourite ingredients and meals.
I recently did the 30hr plus transit from Australia to France for 3 weeks for work reasons, this was quite stressful due to my limited diet (no gluten, yeast, dairy, soy, No fruit, no salad)
Depending on what foods/ingredients you want to eliminate - quite a few of us, use chef cards. We have typed up cards that we hand to the waitress to pass onto the chef with our cooking instructions, i had mine translated into French.
I survived the trip (just) there were times that i lived on rice cakes and apple juice for a few days. I suggest you research before you go (via the web) find outlets that sell food items that you want etc.
Hope the meds help you soon
take care
greetings from Australia
Re your questions about Diet and eating. there is no one eating sytle that works or doesnt work. If using diet as your main management tool, you will find that you will adapt your meals to suit what ingredients work best.
there are things like Gluten and Yeast hidden in all sorts of items. In Australia it was quite difficult for me to find a balsomic vinegar that does not have wheat or gluten. I have also found that i dont tolerate olive oil or grapeseed oil very well, so use only rice bran oil.
Accepting the MC diagnosis is a big thing, the next big thing is adapting aspects of your life to live with MC.
Using diet management will most likely mean you have to say goodbye to some of your favourite ingredients and meals.
I recently did the 30hr plus transit from Australia to France for 3 weeks for work reasons, this was quite stressful due to my limited diet (no gluten, yeast, dairy, soy, No fruit, no salad)
Depending on what foods/ingredients you want to eliminate - quite a few of us, use chef cards. We have typed up cards that we hand to the waitress to pass onto the chef with our cooking instructions, i had mine translated into French.
I survived the trip (just) there were times that i lived on rice cakes and apple juice for a few days. I suggest you research before you go (via the web) find outlets that sell food items that you want etc.
Hope the meds help you soon
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
-
Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Brenda
it does take time to figure it all out. and like most things in life, you get back what you put into it.
unfortunately there are no short cuts or easy ways when MC is in your life.
i am 7.5 months post diagnosis, I am using diet as my main management tool, the only meds i am using is small amounts of cholestraimine when i have had food items that dont agree with me.
If i stick to the foods and ingredients that suit me, i have no D issues and no supplementry symptoms.
it does take time to figure it all out. and like most things in life, you get back what you put into it.
unfortunately there are no short cuts or easy ways when MC is in your life.
i am 7.5 months post diagnosis, I am using diet as my main management tool, the only meds i am using is small amounts of cholestraimine when i have had food items that dont agree with me.
If i stick to the foods and ingredients that suit me, i have no D issues and no supplementry symptoms.
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
-
Joefnh
- Rockhopper Penguin
- Posts: 2478
- Joined: Wed Apr 21, 2010 8:25 pm
- Location: Southern New Hampshire
Hi Brenda, this can be quite unsettling. For me this all come on somewhat suddenly this past April. I went from being achy and sore for years to having increasing amounts of D during last winter. Last April everything went nuts and I ended up with the diagnosis of MC and Crohns. Like many on this site, major diet changes have been whats worked the best. I am also taking the Entocort and that too has been quite helpful.
Overall this is a life changer, but this can be dealt with. There are days though that I do miss the breads and pastries.
Best wishes Brenda
--Joe
Overall this is a life changer, but this can be dealt with. There are days though that I do miss the breads and pastries.
Best wishes Brenda
--Joe
Joe