I hope I have ended up in the right place to introduce myself as a newbie. Would like to first say how incredible this forum is. I have been reading for days and have been blown away by how much information and how much caring is in this one place.
I was diagnosed in March after 2nd ER visit with MC and was relieved I had a name for what had been going on since Jan.1 '16. I figured out quickly that I was going to have to figure most of this out on my own because GI told me that it would go away on its own and there wasn't anything really wrong with me. Long story short: NP and I have been going through the list of meds one by one and nothing was helping until budesonide was offered as last chance. If I had not found this wonderful site and started taking care of myself I think I would still be in big trouble with wd. Ordered the book (have already read it twice), have gone GF and DF and actually had a norman this morning!
I know I still have a long way to go, but thanks to you guys I know I'll find my way. Sending my test kit off in the morning so I'll soon have more information to guide me.
Thanks for being here!!
First time poster
Moderators: Rosie, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hello LauraAnn,
Welcome to our Internet family. Congratulations on your fast results. You're obviously a self-starter and you're on the right track with your treatment program. Good for you.
As mentioned in the book (in chapter 10), please don't be discouraged if symptoms should return in a few weeks as your immune system begins to shift it's focus from gluten antibodies (as the anti-gliadin antibodies fade away) to other possible food sensitivities. But the budesonide should prevent that from happening in most cases. And before your budesonide treatment regimen ends, you will have your EnteroLab results, so you will be aware of any additional major food sensitivity issues that might need to be addressed before weaning off the budesonide.
Again, welcome aboard, and please feel free to ask anything. Thank you for posting, and for your kind words, and I hope that your recovery continues smoothly.
Tex
P. S. It's really a shame that all gastroenterologists who pretend that MC is a non-issue can't personally experience the pleasures of living with the disease for at least a few months in order to re-prioritize the way they think about the disease.
Welcome to our Internet family. Congratulations on your fast results. You're obviously a self-starter and you're on the right track with your treatment program. Good for you.
As mentioned in the book (in chapter 10), please don't be discouraged if symptoms should return in a few weeks as your immune system begins to shift it's focus from gluten antibodies (as the anti-gliadin antibodies fade away) to other possible food sensitivities. But the budesonide should prevent that from happening in most cases. And before your budesonide treatment regimen ends, you will have your EnteroLab results, so you will be aware of any additional major food sensitivity issues that might need to be addressed before weaning off the budesonide.
Again, welcome aboard, and please feel free to ask anything. Thank you for posting, and for your kind words, and I hope that your recovery continues smoothly.
Tex
P. S. It's really a shame that all gastroenterologists who pretend that MC is a non-issue can't personally experience the pleasures of living with the disease for at least a few months in order to re-prioritize the way they think about the disease.
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, LauraAnn. Welcome to our group! You're off to a great start. This group was a life saver for me as well. I figured out what works out on my own with Tex's book and all of the expert advice I found on here. My G.I. was no help whatsoever. It's hard to imagine when you're sick that you can lead a "normal" life again, but it is possible. Good luck to you on your journey.
Marcia
------------
My mission in life is not merely to survive, but to thrive and to do so with some passion, some compassion, some humor and some style. - M. Angelou
------------
My mission in life is not merely to survive, but to thrive and to do so with some passion, some compassion, some humor and some style. - M. Angelou
Thank you everyone for the welcome mat. I was reviewing what I have been through and realized that I misspoke in my original post. Seems I totally forgot that February happened when I wasn't paying attention. FYI: here's what really happened (good thing I took notes when I was so sick):
Aug 24 '15 - had endoscope for GERD and given omeprazole to take daily
Jan 1 '16 - cramping and diarrhea begins
Jan - called the doc and said it was giving me diarrhea. They didn't want to, but switched me to famotidine.
Feb 4 - went to my regular doc and she pulled me off losartan and vit D I was taking to see if that would help
Feb 9 - to the ER for pain and D and all the stool testing they normally do - all negative. Sent home after rehydrating no meds
Feb 15 - back to ER for Pain and D and GI doc decided to grace me with his presence and we did a colonoscopy with biopsy
Sent home with Bentyl
Feb 29 - Report from Colonoscopy came in: MC was the diagnosis. The nurse Pract gave me lomotil for D (didn't help)
Mar 3 - tried some pro biotics on my own (stopped after a month)
Nothing to this point had touched the extreme WD morning noon and night
Mar 14 - NP prescribed lailda
Mar 29 - Still no relief, so NP prescribe budesonide along with lailda
Apr 4 - Went GF, DF on my own
Apr 8 - Talked to NP again and said I didn't think lailda was doing anything and she told me stop. Also said it wouldn't
hurt to go GF or DF, but didn't think it would help
Apr 10 - had a norman in morning. Did have D this afternoon, but that's ok.
And here we are.
I should mention too, I have been using magnesium spray for over a year for hip pain (it really helps), so I was one up on that front. Added D3 today (doc had me on D2 before all this).
I have a question regarding budesconide. Since I have not been on it long, do you think I could start weaning myself off of it asap? I don't want to depend on meds - not my cup of tea. As soon as I get my stool test results back, I feel like I can conquer this monster.
Aug 24 '15 - had endoscope for GERD and given omeprazole to take daily
Jan 1 '16 - cramping and diarrhea begins
Jan - called the doc and said it was giving me diarrhea. They didn't want to, but switched me to famotidine.
Feb 4 - went to my regular doc and she pulled me off losartan and vit D I was taking to see if that would help
Feb 9 - to the ER for pain and D and all the stool testing they normally do - all negative. Sent home after rehydrating no meds
Feb 15 - back to ER for Pain and D and GI doc decided to grace me with his presence and we did a colonoscopy with biopsy
Sent home with Bentyl
Feb 29 - Report from Colonoscopy came in: MC was the diagnosis. The nurse Pract gave me lomotil for D (didn't help)
Mar 3 - tried some pro biotics on my own (stopped after a month)
Nothing to this point had touched the extreme WD morning noon and night
Mar 14 - NP prescribed lailda
Mar 29 - Still no relief, so NP prescribe budesonide along with lailda
Apr 4 - Went GF, DF on my own
Apr 8 - Talked to NP again and said I didn't think lailda was doing anything and she told me stop. Also said it wouldn't
hurt to go GF or DF, but didn't think it would help
Apr 10 - had a norman in morning. Did have D this afternoon, but that's ok.
And here we are.
I should mention too, I have been using magnesium spray for over a year for hip pain (it really helps), so I was one up on that front. Added D3 today (doc had me on D2 before all this).
I have a question regarding budesconide. Since I have not been on it long, do you think I could start weaning myself off of it asap? I don't want to depend on meds - not my cup of tea. As soon as I get my stool test results back, I feel like I can conquer this monster.
Hi LauraAnn,
Sadly, you're another victim of a proton pump inhibitor. If your doctor had prescribed famotidine in the first place, instead of omeprazole, you probably wouldn't have MC today. PPIs have caused more cases of MC than you can shake a stick at. IMO PPIs are one of the most iatrogenic drugs ever marketed, and it should be illegal for physicians to prescribe them unless it's to treat a life-threatening issue. And yet most doctors will prescribe a PPI at the drop of a hat.
Not to worry — brain fog is a common problem when MC is active, so it's not unusual to temporarily forget details.
And of course your NP was half-right about avoiding gluten and dairy — it certainly can't hurt.
You've only been using budesonide for slightly less than 2 weeks, so there's no risk that it might have affected your adrenal function at this point. Therefore you can safely stop using it if you wish, without any risk of withdrawal side effects. A short dose taper would probably be best, but you could stop cold turkey if you preferred, without any adverse effects.
That said, please be aware that your "Normans" may disappear as soon as most of the budesonide clears your system. It takes time for the diet changes to stop the inflammation and promote healing because the immune system continues to produce antibodies for a significant length of time after a food (such as gluten) is removed from the diet. That's why many members here prefer to use budesonide to mask their symptoms until their diet changes can take over.
That's assuming that the budesonide is working for you. Typically, it takes a few months (or longer) for the diet changes to produce symptom relief. But in a few uncommon cases, diet changes can bring big improvements within a week or 2 (without budesonide). So it's difficult to guess whether the budesonide is responsible for your improvment or you are simply responding to the diet changes sooner than average.
But I understand your desire to avoid drugs as much as possible. Many of us here (including me) have never taken any medications to treat the disease.
Tex
Sadly, you're another victim of a proton pump inhibitor. If your doctor had prescribed famotidine in the first place, instead of omeprazole, you probably wouldn't have MC today. PPIs have caused more cases of MC than you can shake a stick at. IMO PPIs are one of the most iatrogenic drugs ever marketed, and it should be illegal for physicians to prescribe them unless it's to treat a life-threatening issue. And yet most doctors will prescribe a PPI at the drop of a hat.
Not to worry — brain fog is a common problem when MC is active, so it's not unusual to temporarily forget details.
Your NP was right about the Lialda — there's little point in taking mesalamine when taking budesonide. It's very unlikely to help, but it carries a significant risk of preventing the budesonide from working if the patient happens to be sensitive to mesalamine. IMO physicians who prescribe using the two together don't understand either drug, let alone the effects of the combination.LauraAnn wrote:Apr 8 - Talked to NP again and said I didn't think lailda was doing anything and she told me stop. Also said it wouldn't
hurt to go GF or DF, but didn't think it would help
And of course your NP was half-right about avoiding gluten and dairy — it certainly can't hurt.
You've only been using budesonide for slightly less than 2 weeks, so there's no risk that it might have affected your adrenal function at this point. Therefore you can safely stop using it if you wish, without any risk of withdrawal side effects. A short dose taper would probably be best, but you could stop cold turkey if you preferred, without any adverse effects.
That said, please be aware that your "Normans" may disappear as soon as most of the budesonide clears your system. It takes time for the diet changes to stop the inflammation and promote healing because the immune system continues to produce antibodies for a significant length of time after a food (such as gluten) is removed from the diet. That's why many members here prefer to use budesonide to mask their symptoms until their diet changes can take over.
That's assuming that the budesonide is working for you. Typically, it takes a few months (or longer) for the diet changes to produce symptom relief. But in a few uncommon cases, diet changes can bring big improvements within a week or 2 (without budesonide). So it's difficult to guess whether the budesonide is responsible for your improvment or you are simply responding to the diet changes sooner than average.
But I understand your desire to avoid drugs as much as possible. Many of us here (including me) have never taken any medications to treat the 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.
Welcome LauraAnn,
Gee I wish I had responded to my initial prognosis when it first hit me and I was diagnosed with LC in 2012. No one could help me, direct me or let me know if food elimination was important or not, not even my GI. I got the biggest run around in my entire life so I just did NOTHING.
Jump ahead to Spring of 2015 and I finally got serious about my body because it was truly deteriorating right before my eyes. I found this great forum, did all the testing and probably more so and now I am in the throes of healing. I am so glad you jumped on your diagnosis as quickly as you have, you surely will be able to get a good grip on this MC and begin the proper healing.
Cheers!
Erica
Gee I wish I had responded to my initial prognosis when it first hit me and I was diagnosed with LC in 2012. No one could help me, direct me or let me know if food elimination was important or not, not even my GI. I got the biggest run around in my entire life so I just did NOTHING.
Jump ahead to Spring of 2015 and I finally got serious about my body because it was truly deteriorating right before my eyes. I found this great forum, did all the testing and probably more so and now I am in the throes of healing. I am so glad you jumped on your diagnosis as quickly as you have, you surely will be able to get a good grip on this MC and begin the proper healing.
Cheers!
Erica
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,
Thank you for your comments. I've read all your past posts and feel like I know you. It was stories like yours that inspired me to jump into this healing path on my own (sans Dr.) and be pro-active.
Tex,
You gave me a lot to think about and I've decided to calm down and take this a little slower re: budesonide withdraw. I think I need to relax and enjoy the lack of D for a while and do some more healing. I have only been taking 3mg a day from the beginning so maybe when I feel ready the tapering off will not be too harsh.
I haven't been out of the house for over 3 months, so maybe I can enjoy a little of life I can while I can! Need some new pants that fit my weight loss and need to go back to my Tai Chi classes asap to get some muscle strength back. Really have missed Tai Chi the most of everything.
Waiting for Enterolab test results- hope they come this week.
Thank you to everyone for being here. Love to all.
Thank you for your comments. I've read all your past posts and feel like I know you. It was stories like yours that inspired me to jump into this healing path on my own (sans Dr.) and be pro-active.
Tex,
You gave me a lot to think about and I've decided to calm down and take this a little slower re: budesonide withdraw. I think I need to relax and enjoy the lack of D for a while and do some more healing. I have only been taking 3mg a day from the beginning so maybe when I feel ready the tapering off will not be too harsh.
I haven't been out of the house for over 3 months, so maybe I can enjoy a little of life I can while I can! Need some new pants that fit my weight loss and need to go back to my Tai Chi classes asap to get some muscle strength back. Really have missed Tai Chi the most of everything.
Waiting for Enterolab test results- hope they come this week.
Thank you to everyone for being here. Love to all.
Your welcome LauraAnn,
I'm humbled by your comments...
This is a great place to speak our truth about ourselves and what is going on with the MC world we have been plunged into.
Good Luck to you, I know you can do this, even with its ups and downs it will be so worth every effort you can give it
Hugs
Erica
I'm humbled by your comments...
This is a great place to speak our truth about ourselves and what is going on with the MC world we have been plunged into.
Good Luck to you, I know you can do this, even with its ups and downs it will be so worth every effort you can give it
Hugs
Erica
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
-
Tired and upset
- Posts: 1
- Joined: Thu Apr 28, 2016 4:52 pm
- Location: New Zealand
Hi
Am a newbie to this site, I have read many articles re: Microscopic Colitis on this site and many others, trying to find out as much information I can about my IBD. I have had MC for approx 2 years after a colonoscopy which showed a mild infection. I'm i the care of a holistic/GP doctor and he is awesome. I've had the ups and down over the past two years, but for the past 2 weeks it has been the worst I've experienced. Finally I contacted my doctor last night and I have just started on a course on endocort only this morning after 2 weeks of chronic, extremely watery diarrhea which I have lost 8 kilograms (4kg's in 2 days) and have no appetite, as well as this I am gluten free, which makes it for me extremely hard to find something I can eat and also have adrenal fatigue which makes matters worst. No matter what I eat or lack of it, the diarrhea keeps coming and coming, since 8pm yesterday I have been around 13 times!
I'm drinking plenty of fluids (dehydration sachets from chemist), I'm afraid that if I don't get food into me I might end up in hospital and can't afford that as I'm self-employed, there must be countless others out there who have experienced what I am going through at present, any advice would be awesome, Cheers
Am a newbie to this site, I have read many articles re: Microscopic Colitis on this site and many others, trying to find out as much information I can about my IBD. I have had MC for approx 2 years after a colonoscopy which showed a mild infection. I'm i the care of a holistic/GP doctor and he is awesome. I've had the ups and down over the past two years, but for the past 2 weeks it has been the worst I've experienced. Finally I contacted my doctor last night and I have just started on a course on endocort only this morning after 2 weeks of chronic, extremely watery diarrhea which I have lost 8 kilograms (4kg's in 2 days) and have no appetite, as well as this I am gluten free, which makes it for me extremely hard to find something I can eat and also have adrenal fatigue which makes matters worst. No matter what I eat or lack of it, the diarrhea keeps coming and coming, since 8pm yesterday I have been around 13 times!
I'm drinking plenty of fluids (dehydration sachets from chemist), I'm afraid that if I don't get food into me I might end up in hospital and can't afford that as I'm self-employed, there must be countless others out there who have experienced what I am going through at present, any advice would be awesome, Cheers
Hi Tired,
Welcome to our Internet family. Yes, your experience is typical of MC — if it's not controlled, it can be a very cruel disease after it fully develops. If it's any consolation, some of the worst cases have had to make up to 50 trips per day to the loo.
I too have always been self-employed and I found that being self-employed has at least 1 huge advantage for an MC patient — you don't have to ask anyone for permission when the time comes to sprint for the loo.
You're correct that you need to eat, or things can only get worse. Back when I was recovering, on my worst days I ate chicken soup or something similar that was easy to digest and easier to get down when I didn't feel like eating. Most of us can tolerate rice, and adding that to chicken or turkey soup can provide some extra energy.
How long have you been on a gluten-free diet? The Entocort should begin to help in a day so.
Again, welcome aboard and please feel free to ask anything.
Tex
Welcome to our Internet family. Yes, your experience is typical of MC — if it's not controlled, it can be a very cruel disease after it fully develops. If it's any consolation, some of the worst cases have had to make up to 50 trips per day to the loo.
I too have always been self-employed and I found that being self-employed has at least 1 huge advantage for an MC patient — you don't have to ask anyone for permission when the time comes to sprint for the loo.
You're correct that you need to eat, or things can only get worse. Back when I was recovering, on my worst days I ate chicken soup or something similar that was easy to digest and easier to get down when I didn't feel like eating. Most of us can tolerate rice, and adding that to chicken or turkey soup can provide some extra energy.
How long have you been on a gluten-free diet? The Entocort should begin to help in a day so.
Again, welcome aboard 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.
-
Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Hey there Tired!
hello from across the ditch.
sadly there are a couple of thousand of others that have had similar situation to you (hence why the logo has a person on the loo!)
in line with what Tex has mentioned how long have you been avoiding Gluten and Soy?
the other highly inflammatory diet item is dairy and alcohol - hope you are avoiding these two as well.
when things are bad like they are for you now, we find the best thing is bland well cooked meals based on small amount of ingredients - protein and rice or protein and 1 or 2 safe veges. well cooked makes it easier to digest (less inflammation)
make sure you avoid fruit, salad, raw or just cooked veges, nuts. the fibre is too harsh when we are inflammed.
The satchets from chemist may also have some ingredients that could be contributing to the inflammation
This post has a formula for a homemade dehydration drink - sugar free and no additives
http://www.perskyfarms.com/phpBB2/viewtopic.php?t=992
not sure how may of the posts and discussions you have read here, I do encourage you to read the posts aimed at new people, they contain good info that will answer your questions. a bit of long story short to help you;
medication - what we have found is that a medication that works really well for one person can cause total chaos for another. there is no guaranteed solution or treatment plan that works for everyone - there are good number that have success with entocort
Inflammation - we have to do what we can to minimise inflammation triggers, food /drink items, external enviro triggers, stress,
Vit D3 - although you are a golf pro and spend time outside, you still may need to supplement with Vit D. ongoing inflammation depletes it big time. Has your holistic GP tested your VitD3 levels recently?
while there is lots of inflammation - it is best to stop other supplements/herbals etc based on the experience of members here (over 2000) when things are like they are for you at the moment, bland diet and Vit D3 only is best option. as things improve then you can slowly introduce other key essential vitamins/minerals.
hope this helps
feel free to ask questions, or use the search function.
regards
Gabes
PS I note that one of your interests is Car Racing - do you race? or are you a keen spectator?
hello from across the ditch.
sadly there are a couple of thousand of others that have had similar situation to you (hence why the logo has a person on the loo!)
in line with what Tex has mentioned how long have you been avoiding Gluten and Soy?
the other highly inflammatory diet item is dairy and alcohol - hope you are avoiding these two as well.
when things are bad like they are for you now, we find the best thing is bland well cooked meals based on small amount of ingredients - protein and rice or protein and 1 or 2 safe veges. well cooked makes it easier to digest (less inflammation)
make sure you avoid fruit, salad, raw or just cooked veges, nuts. the fibre is too harsh when we are inflammed.
The satchets from chemist may also have some ingredients that could be contributing to the inflammation
This post has a formula for a homemade dehydration drink - sugar free and no additives
http://www.perskyfarms.com/phpBB2/viewtopic.php?t=992
not sure how may of the posts and discussions you have read here, I do encourage you to read the posts aimed at new people, they contain good info that will answer your questions. a bit of long story short to help you;
medication - what we have found is that a medication that works really well for one person can cause total chaos for another. there is no guaranteed solution or treatment plan that works for everyone - there are good number that have success with entocort
Inflammation - we have to do what we can to minimise inflammation triggers, food /drink items, external enviro triggers, stress,
Vit D3 - although you are a golf pro and spend time outside, you still may need to supplement with Vit D. ongoing inflammation depletes it big time. Has your holistic GP tested your VitD3 levels recently?
while there is lots of inflammation - it is best to stop other supplements/herbals etc based on the experience of members here (over 2000) when things are like they are for you at the moment, bland diet and Vit D3 only is best option. as things improve then you can slowly introduce other key essential vitamins/minerals.
hope this helps
feel free to ask questions, or use the search function.
regards
Gabes
PS I note that one of your interests is Car Racing - do you race? or are you a keen spectator?
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama