Hi all
Still dealing with a flare, pcp will not,prescribe me budesonide and wants me to go back to GI doctor. Mind you, this is the doctor who, 7 years ago, laughed in my face when I told her Of my plans for diet change and stress reduction and said that I would be back in her office in 3 months. So, good news, this did NOT happen but I refuse to see anyone in the practice. I looked at recommendations for doctors near me and Dr. NAGRI in NH comes highly recommended. Asked to be referred to his office.....we will see what happens. Anyone else been to see him.
Flare and referral
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
I believe Joe (Joefnh) and Nancy (nancyl) have seen him (if my memory is correct). There may be others.
Tex
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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Hi Cathy-
You’ve probably checked into this but just in case you have brain fog and didn’t think of it- see if Dr Nagri has a cancellation list. It takes months to get in to see my functional med doc but I got in within 5-6 weeks because I had them put me on the cancellation list. Especially if your schedule is flexible and you can be there on short-notice.
I hope everything works out and this resolves quickly.
Carol
You’ve probably checked into this but just in case you have brain fog and didn’t think of it- see if Dr Nagri has a cancellation list. It takes months to get in to see my functional med doc but I got in within 5-6 weeks because I had them put me on the cancellation list. Especially if your schedule is flexible and you can be there on short-notice.
I hope everything works out and this resolves quickly.
Carol
“.... people will forget what you said, people will forget what you did, but people will never forget how you made them feel.” Maya Angelou
Hi Cathy,
So sorry you're dealing with a flare. I have a feeling that no matter how much time goes by, we are never "safe". Have you considered buying Budesonide from All Day Chemist? I healed with diet alone for 9 years, and finally decided I needed something that could help if things got really bad, so I ordered 90 3 mg pills of Budesonide. Over a year went by before I finally decided to take one. Talk about miracle, my colon calmed down overnight, and I have been taking one pill a day ever since - about 2.5 months by now.
I paid a little over 60 dollars, and have now bought another 90 in case I'm unable to get off it. One thing I discovered quickly, is that I need to be just as strict with my diet as I was before. When I had one firm BM every morning for close to 2 months, I thought I could allow myself a little more freedom, so I ate out a few times at supposedly "safe" restaurants - always talking to the Manager or Chef to explain my situation. I should have know better, and soon lost the firm BM's and started sliding. Needless to say, that was a stupid mistake that I will not repeat.
Anyhow, I wish you the best and hope you'll get out of the flare soon. Glad you were able to get the GI appointment relatively quickly.
Love,
Kari
So sorry you're dealing with a flare. I have a feeling that no matter how much time goes by, we are never "safe". Have you considered buying Budesonide from All Day Chemist? I healed with diet alone for 9 years, and finally decided I needed something that could help if things got really bad, so I ordered 90 3 mg pills of Budesonide. Over a year went by before I finally decided to take one. Talk about miracle, my colon calmed down overnight, and I have been taking one pill a day ever since - about 2.5 months by now.
I paid a little over 60 dollars, and have now bought another 90 in case I'm unable to get off it. One thing I discovered quickly, is that I need to be just as strict with my diet as I was before. When I had one firm BM every morning for close to 2 months, I thought I could allow myself a little more freedom, so I ate out a few times at supposedly "safe" restaurants - always talking to the Manager or Chef to explain my situation. I should have know better, and soon lost the firm BM's and started sliding. Needless to say, that was a stupid mistake that I will not repeat.
Anyhow, I wish you the best and hope you'll get out of the flare soon. Glad you were able to get the GI appointment relatively quickly.
Love,
Kari
"My mouth waters whenever I pass a bakery shop and sniff the aroma of fresh bread, but I am also grateful simply to be alive and sniffing." Dr. Bernstein
Kari,
That example about eating at restaurants, even supposedly "safe restaurants", is priceless. Thank you, thank you, thank you for sharing.
Love,
Tex
That example about eating at restaurants, even supposedly "safe restaurants", is priceless. Thank you, thank you, thank you for sharing.
Love,
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.
Thank you Kari- I had also thought of suggesting ordering Budesonide from All Day Chemist but then questioned whether I was remembering accurately. I’m glad to hear that’s still an option.
Carol
Carol
“.... people will forget what you said, people will forget what you did, but people will never forget how you made them feel.” Maya Angelou
I've discovered that the price of Entocort (generic Budesonide) has really plummeted, I have a Medicare Part D plan, and I just checked the cost with my plan. It is $62.86 for 90 capsules after the plan deductible has been paid. I checked other plans on the medicare.gov web site and there is a huge variation in cost with the cheapest I found $12.78 and the most expensive plan being $513.31 for 90 capsules. If you aren't on Medicare or have a plan that charges a lot for budesonide, Good Rx offers coupons at various pharmacies between $95 and $100.
Alldaychemist charges $53.63 for 90 capsules, plus a shipping charge that can vary. You don't need a prescription, and it takes several weeks to receive your order. So there are more options now, depending on your circumstances.
Rosie
Alldaychemist charges $53.63 for 90 capsules, plus a shipping charge that can vary. You don't need a prescription, and it takes several weeks to receive your order. So there are more options now, depending on your circumstances.
Rosie
Our greatest weakness lies in giving up. The most certain way to succeed is always to try just one more time………Thomas Edison
Hi Kari,Kari wrote:Hi Cathy,
So sorry you're dealing with a flare. I have a feeling that no matter how much time goes by, we are never "safe". Have you considered buying Budesonide from All Day Chemist? I healed with diet alone for 9 years, and finally decided I needed something that could help if things got really bad, so I ordered 90 3 mg pills of Budesonide. Over a year went by before I finally decided to take one. Talk about miracle, my colon calmed down overnight, and I have been taking one pill a day ever since - about 2.5 months by now.
I paid a little over 60 dollars, and have now bought another 90 in case I'm unable to get off it. One thing I discovered quickly, is that I need to be just as strict with my diet as I was before. When I had one firm BM every morning for close to 2 months, I thought I could allow myself a little more freedom, so I ate out a few times at supposedly "safe" restaurants - always talking to the Manager or Chef to explain my situation. I should have know better, and soon lost the firm BM's and started sliding. Needless to say, that was a stupid mistake that I will not repeat.
Anyhow, I wish you the best and hope you'll get out of the flare soon. Glad you were able to get the GI appointment relatively quickly.
Love,
Kari
I have debated getting the med from ALL Day to have it just in case. I am almost glad though now that my PCP would not prescribe it as i've been able to get myself out of a flare with alternative treatments and Immodium. I am cancelling my appointment with the new GI this week. I THINK this may have started with eating out in the dominican republic over Christmas/New Years. I too, tried to give myself freedom and ate things that I normally don't eat (loads of nuts, etc.) and I think I may have triggered something, then when I got back, it put me into a flare. Another reminder that this disease is always there, even when we think we're past it.
Hi Cathy,
I haven't been to a GI in 7 years, and would hate to go see one just to get a script, so All Day Chemist is a blessing. Suppose I should have a colonoscopy again, but would just as soon skip it. Unfortunately, I agree that what most of us are dealing with is for life
.
So glad to hear you've gotten the flare under control. Having a supply of Budesonide as a back stop may give you an extra sense of security, which will lessen the stress from this awful disease.
All the best,
Kari
I haven't been to a GI in 7 years, and would hate to go see one just to get a script, so All Day Chemist is a blessing. Suppose I should have a colonoscopy again, but would just as soon skip it. Unfortunately, I agree that what most of us are dealing with is for life
. So glad to hear you've gotten the flare under control. Having a supply of Budesonide as a back stop may give you an extra sense of security, which will lessen the stress from this awful disease.
All the best,
Kari
"My mouth waters whenever I pass a bakery shop and sniff the aroma of fresh bread, but I am also grateful simply to be alive and sniffing." Dr. Bernstein
HI...even after my healing stint of 5 years now....I finally ordered from Allday Chemist recently (all they needed was my drivers license - its a proof of person thing) as I don't intend to go back to my primary unless I absolutely have to for any reason. I'll have to have some major bacterial issue that I can't resolve using my Nano Silver before I will visit my Dr again.
I plan to only take 1 - 3mg each morning to keep 'things' going along accordingly. I think tension and stressful moments are what trigger my bathroom episodes and they are few and far between....but still I get them. LC is very annoying but I am determined to not let it get in my way anymore. I am working on TMS - Tension syndrome and it does work as long as I keep reminding myself to not let pain or discomfort be my keeper any longer. I'm doing tons better! I do have more 4-5 than 6-7 Bristols these days
I plan to only take 1 - 3mg each morning to keep 'things' going along accordingly. I think tension and stressful moments are what trigger my bathroom episodes and they are few and far between....but still I get them. LC is very annoying but I am determined to not let it get in my way anymore. I am working on TMS - Tension syndrome and it does work as long as I keep reminding myself to not let pain or discomfort be my keeper any longer. I'm doing tons better! I do have more 4-5 than 6-7 Bristols these days
To Succeed you have to Believe in something with such a passion that it becomes a Reality - Anita Roddick
Dx LC April 2012 had symptoms since Aug 2007
Dx LC April 2012 had symptoms since Aug 2007
Erica P-G wrote:HI...even after my healing stint of 5 years now....I finally ordered from Allday Chemist recently (all they needed was my drivers license - its a proof of person thing) as I don't intend to go back to my primary unless I absolutely have to for any reason. I'll have to have some major bacterial issue that I can't resolve using my Nano Silver before I will visit my Dr again.
I plan to only take 1 - 3mg each morning to keep 'things' going along accordingly. I think tension and stressful moments are what trigger my bathroom episodes and they are few and far between....but still I get them. LC is very annoying but I am determined to not let it get in my way anymore. I am working on TMS - Tension syndrome and it does work as long as I keep reminding myself to not let pain or discomfort be my keeper any longer. I'm doing tons better! I do have more 4-5 than 6-7 Bristols these days
So great to hear that you're doing better. I also think your attitude is key with this disease and it sounds like you've got a good one! Sleep is also so very important to EVERY thing and I have sleeping like a rock.
Good to know that there is an option for the budesonide....I am feeling SO much better and would just as soon not see a doctor if I don't have to.