Hi all
I went to my Gastro yesterday for my first check-up since being diagnosed. I have been awake most of the night, as I have come to the conclusion that she is not helping me at all.
I told her the medication she had put me on was not doing anything and that I have changed to a GF diet. Her response was that there is no real need for me to go GF as I am not Celiac, but if I want to go that way then it probably wouldn't hurt, but no real need. Because the medication had no effect she has decided to double the dose. She then said that she did not really believe the test results, even though when I had seen her for the results she said they showed in every section of my colon. She seems to think that I am suffering from stress and have IBS, so if the medication doesn't work, then I just have to live with D for the rest of my life.
I took in copies of peer reviewed research I had found and she didn't even want to look at it.
I went to the toilet 6 times yesterday and had pain in my stomach all night. I don't want to live this way, it is pissing me off.
Does anyone know of any Gastro's in Victoria, Australia? I would be prepared to travel to see one who had some better knowledge of MC and who would have me on the right treatment regime.
Cheers
Mim
Rant over my Doc
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi Mim,
Sorry you are having such difficulty with your doc.
There aren't many Aussies on this board, so I don't like your chances of finding a new doc this way. Many members have had trouble with their doctors, and often end up deciding they just need to ignore the doctors and resolve things themselves.
Well done on deciding to go GF.
Going GF, DF and SF all at once is usually the fastest way to put a stop to the D. Doing it using more basic foods, rather than swapping to the GF processed foods on the supermarket shelves usually helps as well.
Don't forget to check for additives in any vitamins or prescription meds you are taking as well.
Lyn
Sorry you are having such difficulty with your doc.
There aren't many Aussies on this board, so I don't like your chances of finding a new doc this way. Many members have had trouble with their doctors, and often end up deciding they just need to ignore the doctors and resolve things themselves.
Well done on deciding to go GF.
Going GF, DF and SF all at once is usually the fastest way to put a stop to the D. Doing it using more basic foods, rather than swapping to the GF processed foods on the supermarket shelves usually helps as well.
Don't forget to check for additives in any vitamins or prescription meds you are taking as well.
Lyn
Hi Mim,
I'm sorry, but I believe you are quite correct -- your Gastro is totally lost, and competely out of her league attempting to treat someone who has MC. My gastro was just as lost. It's very tough to find qualified GI docs anywhere in the world, and I'm not aware of any who are practicing in Oz. Maybe one of our members from there will be able to suggest a doctor who at least realizes that MC is an inflammatory bowel disease.
Tex
I'm sorry, but I believe you are quite correct -- your Gastro is totally lost, and competely out of her league attempting to treat someone who has MC. My gastro was just as lost. It's very tough to find qualified GI docs anywhere in the world, and I'm not aware of any who are practicing in Oz. Maybe one of our members from there will be able to suggest a doctor who at least realizes that MC is an inflammatory bowel disease.
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
Hi Mim
greetings from Qld.
if you visit the Crohns/colitis association website/forums you may find a GI in Victoria that is proactive about IBD's.
Most GI's in Brisbane are not looking for MC in patients under the age of 55, i lucked out big time that the GI i went to is one of the only ones who does take biopsies during colonscopy for all patients, albeit he does not believe that diet is a means of attaining remission.
my next HUGE piece of luck was finding this forum the next day and it has proven more valuable than any specialist or GP (and i have tried a few) in the past 2.5 years.
the crap (pun intended) part of MC, is that we are all different. Some people can have fantastic results within 4 weeks of going GF, and others it can take 6 months (or more) to determine the major triggers and minimise the symptoms.
this may not be what you want to hear today after your crap visit with the GI. 'Self Management' has been the key to success for most, using the knowledge of the fantastic people on this forum, you can do this without having a pro-active GI specialist.
Be assured that all the time, energy, patience you apply to figuring out what works for you is worth it,you can be D free and pain free!
greetings from Qld.
if you visit the Crohns/colitis association website/forums you may find a GI in Victoria that is proactive about IBD's.
Most GI's in Brisbane are not looking for MC in patients under the age of 55, i lucked out big time that the GI i went to is one of the only ones who does take biopsies during colonscopy for all patients, albeit he does not believe that diet is a means of attaining remission.
my next HUGE piece of luck was finding this forum the next day and it has proven more valuable than any specialist or GP (and i have tried a few) in the past 2.5 years.
the crap (pun intended) part of MC, is that we are all different. Some people can have fantastic results within 4 weeks of going GF, and others it can take 6 months (or more) to determine the major triggers and minimise the symptoms.
this may not be what you want to hear today after your crap visit with the GI. 'Self Management' has been the key to success for most, using the knowledge of the fantastic people on this forum, you can do this without having a pro-active GI specialist.
Be assured that all the time, energy, patience you apply to figuring out what works for you is worth it,you can be D free and pain free!
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Oh my God, he actually said that?! So sorry about what you are going through. My doc didn't know much either, but he was willing to give me the drug that DOES WORK ( at least for many of us). It's budesonide ( Entocort). I also have gone gluten, dairy, and soy free. And when I am in a flare, I also stay away from fresh fruit and veggies. They are just too hard on an inflamed system. Keep it very simple at first ( maybe protein, c0oked veggies, and rice) It's tough to do, but feeling better is so worth it.
Good luck Mim.
Leah
Good luck Mim.
Leah
Thanks for your support guys
I have just sent an email off to:
Dr Miles Sparrow, FRACP
Trained in Melbourne and then at the University of Chicago and Mount Sinai Medical Centre. I hold an appointment at Box Hill Hospital where I am the Director of Inflammatory Bowel Disease Clinical Trials.
I provide general gastroenterological services including gastroscopy and colonoscopy and my area of interest is inflammatory bowel disease (Crohn’s disease and ulcerative colitis).
Hopefully I will hear something back from him soon. I will keep you informed.
Mim
I have just sent an email off to:
Dr Miles Sparrow, FRACP
Trained in Melbourne and then at the University of Chicago and Mount Sinai Medical Centre. I hold an appointment at Box Hill Hospital where I am the Director of Inflammatory Bowel Disease Clinical Trials.
I provide general gastroenterological services including gastroscopy and colonoscopy and my area of interest is inflammatory bowel disease (Crohn’s disease and ulcerative colitis).
Hopefully I will hear something back from him soon. I will keep you informed.
Mim
Hi Mim,
So sorry to hear of your frustrating doctor visit. FWIW, the GI doc I see also trained at MT Sinai (in NYC, if that's the one he's talking about). She has been extremely on target with meds and support of GF/DF/SF diet, which brought me great relief in what I feel was a relatively short time (4-6 months) though there have been occasional flares and other issues. I did take budesonide/Entocort for over a year, tapering off it VERY gradually and am now taking balsalazide with good results.
Like Leah, an abundance of fiber is NOT my friend. I limit salad to a moderate portion once every day or two, and if things are "upset" I avoid it. Thankfully, I seem to be able to eat a small quantity of various fruits each day.
I'm not saying I feel terrific every day, but I feel pretty good most days, which is a vast improvement over where I was 18 months ago.
I wish you relief from your symptoms, and success with the potential new doc.
So sorry to hear of your frustrating doctor visit. FWIW, the GI doc I see also trained at MT Sinai (in NYC, if that's the one he's talking about). She has been extremely on target with meds and support of GF/DF/SF diet, which brought me great relief in what I feel was a relatively short time (4-6 months) though there have been occasional flares and other issues. I did take budesonide/Entocort for over a year, tapering off it VERY gradually and am now taking balsalazide with good results.
Like Leah, an abundance of fiber is NOT my friend. I limit salad to a moderate portion once every day or two, and if things are "upset" I avoid it. Thankfully, I seem to be able to eat a small quantity of various fruits each day.
I'm not saying I feel terrific every day, but I feel pretty good most days, which is a vast improvement over where I was 18 months ago.
I wish you relief from your symptoms, and success with the potential new doc.
Suze
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MBombardier
- Rockhopper Penguin
- Posts: 1523
- Joined: Thu Oct 14, 2010 10:44 am
- Location: Vancouver, WA
The first time I read the subject line, I thought it said, "Ran over my doc." 
You'd be justified if you did. Well, sort of... Good for you taking charge of your wellness and doing what you know is best for yourself!!
You'd be justified if you did. Well, sort of... Good for you taking charge of your wellness and doing what you know is best for yourself!!Marliss Bombardier
Dum spiro, spero -- While I breathe, I hope
Psoriasis - the dark ages
Hashimoto's Thyroiditis - Dec 2001
Collagenous Colitis - Sept 2010
Granuloma Annulare - June 2011
Dum spiro, spero -- While I breathe, I hope
Psoriasis - the dark ages
Hashimoto's Thyroiditis - Dec 2001
Collagenous Colitis - Sept 2010
Granuloma Annulare - June 2011
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Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
marliss
great idea but I am not sure how the jail (or gaol) system would cope with an inmate with multiple intolerences.....
Mim
i hope dr sparrow works out for you. dont build up expectations too high before the appointment. Finding a pro-active Specialist or GP is like finding a pink diamond.
if you have the time, do a google search on Dr Sparrow and see if there is any published articles or studies that he participated in etc and that might give you an indication of his approach to IBD's
great idea but I am not sure how the jail (or gaol) system would cope with an inmate with multiple intolerences.....
Mim
i hope dr sparrow works out for you. dont build up expectations too high before the appointment. Finding a pro-active Specialist or GP is like finding a pink diamond.
if you have the time, do a google search on Dr Sparrow and see if there is any published articles or studies that he participated in etc and that might give you an indication of his approach to IBD's
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Hi guys,
Latest update.
I took Gabes advice and had a look at the Crohns/colitis association website, that was where I found Dr Sparrow. I also phoned their helpline and spoke to a nurse and she suggested I contact the major teaching hospitals in Melbourne as the best specialists are there. I phoned the Royal Melbourne Hospital and ended up speaking to one of the IBD nurses. She told me that Prof Finlay Macrae (inflammatory bowel disease clinic) runs clinics on a Thurday night and to get my GP to send a referral. She was very positive that they would be able to help me.
Later that evening I received an email back from Dr Sparrow asking me to phone him on Mon or Tues to have a chat.
I went to see my GP today and she was very happy that I am seeking another opinion and was not overly happy with what the Gastro had said to me and said she would not be sending patients to her for IBD. She also said that if I wanted to see Dr Sparrow she would be happy to video conference with him so that she could be informed and help as much as she can.
My GP also said that I am too young to have to live with this when it can be managed and that it definitely isn't IBS. She asked if I was planning on having any more children, I said no way, I am too old for that and am happy being a young Nanny to Rob's (my partner) beautiful grand children. She explained that some of the treatment that might be used could be similar to some cancer treatments, but not to worry at this stage and that it is only a maybe.
I am feeling a lot happier today (apart from a minor accident when I got home from town, was glad to be home when that happened).
I will keep you up-to-date with how I go.
Mim
Latest update.
I took Gabes advice and had a look at the Crohns/colitis association website, that was where I found Dr Sparrow. I also phoned their helpline and spoke to a nurse and she suggested I contact the major teaching hospitals in Melbourne as the best specialists are there. I phoned the Royal Melbourne Hospital and ended up speaking to one of the IBD nurses. She told me that Prof Finlay Macrae (inflammatory bowel disease clinic) runs clinics on a Thurday night and to get my GP to send a referral. She was very positive that they would be able to help me.
Later that evening I received an email back from Dr Sparrow asking me to phone him on Mon or Tues to have a chat.
I went to see my GP today and she was very happy that I am seeking another opinion and was not overly happy with what the Gastro had said to me and said she would not be sending patients to her for IBD. She also said that if I wanted to see Dr Sparrow she would be happy to video conference with him so that she could be informed and help as much as she can.
My GP also said that I am too young to have to live with this when it can be managed and that it definitely isn't IBS. She asked if I was planning on having any more children, I said no way, I am too old for that and am happy being a young Nanny to Rob's (my partner) beautiful grand children. She explained that some of the treatment that might be used could be similar to some cancer treatments, but not to worry at this stage and that it is only a maybe.
I am feeling a lot happier today (apart from a minor accident when I got home from town, was glad to be home when that happened).
I will keep you up-to-date with how I go.
Mim
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Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
This is great news, woo hoo!!
to have your GP on your side is a huge win in itself!
the fact that dr sparrow replied so quickly is a positive step.
take a few deep breathes and relax knowing it will get better
and none of us deserve this crappy condition, young or old.
to have your GP on your side is a huge win in itself!
the fact that dr sparrow replied so quickly is a positive step.
take a few deep breathes and relax knowing it will get better
and none of us deserve this crappy condition, young or old.
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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draperygoddess
- Rockhopper Penguin
- Posts: 558
- Joined: Mon Aug 29, 2011 6:49 am
- Location: Tennessee
I wish my GP understood that. Whenever I complain about aches or pains, or brittle hair, or neurological issues, or whatever, he points out that's just part of growing older.Cynthia wrote:Being a certain age shouldn't mean it's okay for you to be miserable!
I'm pretty sure that observation is based on his own experience, because he's older than I am, and probably loaded with aches and pains, because he's been taking a statin ever since they became available. 
Since the predominant items on most doctors' radar are cholesterol and blood pressure, my last several sets of test results have been superb (in his view), and I notice that he hasn't scheduled any tests for an upcoming appointment. When the date is only a few days away, I believe I'll call and cancel that appointment. With no test results to discuss, what would we talk about? I really don't need a doctor just to point out that I'm gettin' older -- I already noticed that.
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.