Is it worth it
Moderators: Rosie, JFR, Gabes-Apg, grannyh, Mars, starfire, Polly, Joefnh
- Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Is it worth it
A chapter from the Gabes MC Journey:
In May/June this year when I had chronic acid reflux, very painful piles, discomfort and pain from C, issues with my teeth, and felt impact of some hormone medication changes, then I had to go and have upper and lower scopes to investigate the GERD and treat Piles (2nd lot of scopes in under 2 years) I got quite down and questioned ‘is all that I have done and what I do every week with my meals and lifestyle worth it?’ and ‘will I make it through the next 15 years of working and living life with MC?’ At that time i was a bit quiet on the forum, i found it hard to be upbeat about living with MC.
Like the rainbow after the storm things changed....
Just before the scopes I started having 5000iu of Vit D a day and the GERD improved amazingly, (thanks Tex)
After the scopes I started taking a children’s paraffin liquid and the C improved and most of the discomfort went away, and I started taking pure calcium carbonate powder and this also helped the GERD
There was a set back with the infected moler and the oral surgery,
I learnt that my body does not like infection or anaesthetic of any kind
I then started back on my supplement regime and 2 weeks post the surgery the oral surgeon asked me what i had done, as he had not seen any patient heal as well as I did. He thought me with MC that the wound healing would take longer. (All i did was low inflammation foods and have apple and blackcurrent juice for the Vit C, and 5ml of zinc per day)
At the time i didn’t fully appreciate that my diligent eating plan of low inflammation type foods was a key contributor to the good healing results.
2 months after the scopes i had the visit with the GI specialist (this was last week)
She asked me how the PPI meds were going for the GERD and i replied that i wasn’t taking them because I was having good outcomes from using high dose Vit D3 etc
She replied fair enough, and went on to say that the meds would not necessarily work that well given my symptoms (mmm so why did she prescribe them......any wonder I am skeptical of these medical unprofessionals)
now to the lower part of things, she did take quite a few biopsies and none of them showed a lymphocyte level to be MC, based on that in her opinion the MC is in remission.
It was also confirmed that the C issues are not MC related, there is a physical reason why that is occurring. at this stage i was hesitant to trust the MC is in remission statement.
Discussing the results with some of our wise original MC'ers – I know that the status of remission can be ‘fragile’ and can revert to a flare at any time.
There is still immune/adrenal/leaky gut/gerd issues that do cause some stress on my body, albeit the recovery after the oral surgery and the 'apparent' MC in remission status answered my question, yes it is worth it
Looking back to where i was mentally and emotionally 5 months ago
Is all that i have done and what i do every week with my meals and lifestyle worth it – Damn right it was/is worth it..
with diligent attention to my eating plan, changing jobs to one that doesnt require travel, moving from a 2.1 million city to a rural hub that is a 150,000 person city where life is less stressful, i have gained good control on the MC, and the eating plan and supplements are keeping the acid reflux at bay
Admittedly my life now is quite different to the one pre MC Dx, but that is not a bad thing, like how we repogramme our brain and tastebuds for the diet changes, it takes time (via a grieving process) to let go of some of the elements that were pre MC dx and to appreciate what is important in my life now.
Will I make it through the next 15 years – who knows??? Does any of us know where we will be in 2 years time or even in 2 months time. The important thing is to live in the now and appreciate what is around me, I am reasonable well, if i can trust the biopsy results then i have managed to reduce the inflammation and lymphocyte numbers considerably to what they were 22 months ago and that is something worth celebrating.....
I have pretty good quality of life, I enjoy my work, I like where I live and the lifestyle it gives me, I have enough money for my foods, supplements, treatments (acupuncture/BIA/massage) and treats like coconut icecream and rice milk chocolate.
I was very blessed, the journey to find what works for me was not too arduous,
- firstly the wonderful people on this site, the wealth of information, the laughs and the hugs that made the journey alot easier.
- I had been avoiding gluten, lactose and yeast for about 10 years before Dx so the adjustment to a 'pure' GF/SF/DF/YF lifestyle was not totally foreign.
- I have beautiful friends who are naturopaths who give me valuable advice and good quality supplements at cost
- access to great practitioners like Shauno acupuncturist extraordinaire and Helen for the BIA (which was like a blend of MRT testing and Acupuncture treatments) who have help me to support and nurture my body to all that is going on
next to the tag line of 'there is no right way or wrong way there is your way' - i think there is another ' you get what you give'
Hang in there, if you give your everything into finding what works for you, you support and nuture your body, things will improve, it is worth it and you will get your life back.
Me working in France, with a GF, DF, SF cake....
In May/June this year when I had chronic acid reflux, very painful piles, discomfort and pain from C, issues with my teeth, and felt impact of some hormone medication changes, then I had to go and have upper and lower scopes to investigate the GERD and treat Piles (2nd lot of scopes in under 2 years) I got quite down and questioned ‘is all that I have done and what I do every week with my meals and lifestyle worth it?’ and ‘will I make it through the next 15 years of working and living life with MC?’ At that time i was a bit quiet on the forum, i found it hard to be upbeat about living with MC.
Like the rainbow after the storm things changed....
Just before the scopes I started having 5000iu of Vit D a day and the GERD improved amazingly, (thanks Tex)
After the scopes I started taking a children’s paraffin liquid and the C improved and most of the discomfort went away, and I started taking pure calcium carbonate powder and this also helped the GERD
There was a set back with the infected moler and the oral surgery,
I learnt that my body does not like infection or anaesthetic of any kind
I then started back on my supplement regime and 2 weeks post the surgery the oral surgeon asked me what i had done, as he had not seen any patient heal as well as I did. He thought me with MC that the wound healing would take longer. (All i did was low inflammation foods and have apple and blackcurrent juice for the Vit C, and 5ml of zinc per day)
At the time i didn’t fully appreciate that my diligent eating plan of low inflammation type foods was a key contributor to the good healing results.
2 months after the scopes i had the visit with the GI specialist (this was last week)
She asked me how the PPI meds were going for the GERD and i replied that i wasn’t taking them because I was having good outcomes from using high dose Vit D3 etc
She replied fair enough, and went on to say that the meds would not necessarily work that well given my symptoms (mmm so why did she prescribe them......any wonder I am skeptical of these medical unprofessionals)
now to the lower part of things, she did take quite a few biopsies and none of them showed a lymphocyte level to be MC, based on that in her opinion the MC is in remission.
It was also confirmed that the C issues are not MC related, there is a physical reason why that is occurring. at this stage i was hesitant to trust the MC is in remission statement.
Discussing the results with some of our wise original MC'ers – I know that the status of remission can be ‘fragile’ and can revert to a flare at any time.
There is still immune/adrenal/leaky gut/gerd issues that do cause some stress on my body, albeit the recovery after the oral surgery and the 'apparent' MC in remission status answered my question, yes it is worth it
Looking back to where i was mentally and emotionally 5 months ago
Is all that i have done and what i do every week with my meals and lifestyle worth it – Damn right it was/is worth it..
with diligent attention to my eating plan, changing jobs to one that doesnt require travel, moving from a 2.1 million city to a rural hub that is a 150,000 person city where life is less stressful, i have gained good control on the MC, and the eating plan and supplements are keeping the acid reflux at bay
Admittedly my life now is quite different to the one pre MC Dx, but that is not a bad thing, like how we repogramme our brain and tastebuds for the diet changes, it takes time (via a grieving process) to let go of some of the elements that were pre MC dx and to appreciate what is important in my life now.
Will I make it through the next 15 years – who knows??? Does any of us know where we will be in 2 years time or even in 2 months time. The important thing is to live in the now and appreciate what is around me, I am reasonable well, if i can trust the biopsy results then i have managed to reduce the inflammation and lymphocyte numbers considerably to what they were 22 months ago and that is something worth celebrating.....
I have pretty good quality of life, I enjoy my work, I like where I live and the lifestyle it gives me, I have enough money for my foods, supplements, treatments (acupuncture/BIA/massage) and treats like coconut icecream and rice milk chocolate.
I was very blessed, the journey to find what works for me was not too arduous,
- firstly the wonderful people on this site, the wealth of information, the laughs and the hugs that made the journey alot easier.
- I had been avoiding gluten, lactose and yeast for about 10 years before Dx so the adjustment to a 'pure' GF/SF/DF/YF lifestyle was not totally foreign.
- I have beautiful friends who are naturopaths who give me valuable advice and good quality supplements at cost
- access to great practitioners like Shauno acupuncturist extraordinaire and Helen for the BIA (which was like a blend of MRT testing and Acupuncture treatments) who have help me to support and nurture my body to all that is going on
next to the tag line of 'there is no right way or wrong way there is your way' - i think there is another ' you get what you give'
Hang in there, if you give your everything into finding what works for you, you support and nuture your body, things will improve, it is worth it and you will get your life back.
Me working in France, with a GF, DF, SF cake....
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,
I am go happy to hear that you are feeling better. I often wonder how you are doing after your tough year.
You have been through so much, but have a strong will and determination, and came out on top. I for one certainly admire you for what you have overcome. Thank you so much for sharing your story with us. We all need to know there can be a light at the end of the tunnel.
I believe the acupuncturist is helping me a lot too. And, thanks to the information from Tex on Vitamin D I have also upped my dose to 5000 IU's.
I love that photo. You have a smile that lights up your face. By the way that cake looks scrumptious. Any chance of you sharing the recipe?
Love
Nancy
I am go happy to hear that you are feeling better. I often wonder how you are doing after your tough year.
You have been through so much, but have a strong will and determination, and came out on top. I for one certainly admire you for what you have overcome. Thank you so much for sharing your story with us. We all need to know there can be a light at the end of the tunnel.
I believe the acupuncturist is helping me a lot too. And, thanks to the information from Tex on Vitamin D I have also upped my dose to 5000 IU's.
I love that photo. You have a smile that lights up your face. By the way that cake looks scrumptious. Any chance of you sharing the recipe?
Love
Nancy
Beautifully said, Gabes!
You should be very proud of the treatment plan you carved out for yourself as well as the progress you have made. With MC, it is never easy. And often it takes quite some time before we can look back and truly appreciate the results. I like the way your treatment decisions were holistic - you used traditional medicine, alternative medicine, and made moves (even an actual physical move and new job, which could not have been easy) designed to reduce stress. And look at you......IT WORKED!
to the club for MCers who now have negative biopsy results. There aren't many of us here yet, but I know the numbers will be growing. You achieved "clean" microscopic results much faster than I did - remember, my biopsies were still positive after 5 years of MC and diet.
Please add this post to the "Success Stories" forum too - it is incredibly inspirational. You have always been the "poster child" here for each person finding out what works for them. And for exploring a myriad of approaches until you find the combination that works best. You have taught us the importance of being open-minded, eclectic, and relentless on the road to health.
I couldn't agree more with your statement that remission is fragile - we must remain vigilant at all times, not just with diet, but in avoiding antibiotics/PPIs/NSAIDs whenever possible, managing stress appropriately, and so on. But to have achieved this latest milestone, (negative biopsy) is undeniably worth a big celebration! CONGRATS!
Love,
Polly
You should be very proud of the treatment plan you carved out for yourself as well as the progress you have made. With MC, it is never easy. And often it takes quite some time before we can look back and truly appreciate the results. I like the way your treatment decisions were holistic - you used traditional medicine, alternative medicine, and made moves (even an actual physical move and new job, which could not have been easy) designed to reduce stress. And look at you......IT WORKED!
to the club for MCers who now have negative biopsy results. There aren't many of us here yet, but I know the numbers will be growing. You achieved "clean" microscopic results much faster than I did - remember, my biopsies were still positive after 5 years of MC and diet.
Please add this post to the "Success Stories" forum too - it is incredibly inspirational. You have always been the "poster child" here for each person finding out what works for them. And for exploring a myriad of approaches until you find the combination that works best. You have taught us the importance of being open-minded, eclectic, and relentless on the road to health.
I couldn't agree more with your statement that remission is fragile - we must remain vigilant at all times, not just with diet, but in avoiding antibiotics/PPIs/NSAIDs whenever possible, managing stress appropriately, and so on. But to have achieved this latest milestone, (negative biopsy) is undeniably worth a big celebration! CONGRATS!
Love,
Polly
Blessed are they who can laugh at themselves, for they shall never cease to be amused.
Hi Gabes,
You've been on my mind quite frequently lately, and I am elated to read your update . I LOVE your attitude - you listen to your body, take your own advise and don't hesitate to explore all possible ways of helping the healing process along. You are a true inspiration.
As we are learning, living with MC is a life long journey, and we sure have good company here . The fact that you now no longer have the MC markers is an awesome accomplishment, and you deserve several gold stars , as it is due to your own diligent efforts.
I truly hope that you will now enter a relatively stress-free and healthy chapter on your journey, so you will have a chance to focus on having fun and enjoying life, rather than spending your precious energy on coping with and managing tough health issues.
I agree with Polly that your inspirational update belongs in the Success Stories section!!!
Love and hugs,
Kari
You've been on my mind quite frequently lately, and I am elated to read your update . I LOVE your attitude - you listen to your body, take your own advise and don't hesitate to explore all possible ways of helping the healing process along. You are a true inspiration.
As we are learning, living with MC is a life long journey, and we sure have good company here . The fact that you now no longer have the MC markers is an awesome accomplishment, and you deserve several gold stars , as it is due to your own diligent efforts.
I truly hope that you will now enter a relatively stress-free and healthy chapter on your journey, so you will have a chance to focus on having fun and enjoying life, rather than spending your precious energy on coping with and managing tough health issues.
I agree with Polly that your inspirational update belongs in the Success Stories section!!!
Love and hugs,
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
- Joefnh
- Rockhopper Penguin
- Posts: 2478
- Joined: Wed Apr 21, 2010 8:25 pm
- Location: Southern New Hampshire
Gabes what fantastic news!! If I remember correctly you are a member of a very elite club, those who have reversed this awful disease. I believe there are only 2 or 3 that have achieved this amazing milestone.
This is certainly something to celebrate. You have used every tool at your disposal and harnessed your incredible personal discipline to achieve this milestone. I would imagine that climbing Mount Everest might be easier by comparison.
I think a simple...
YAHOO!!!
Is in order.
Thanks so much for sharing this great news
Joe
This is certainly something to celebrate. You have used every tool at your disposal and harnessed your incredible personal discipline to achieve this milestone. I would imagine that climbing Mount Everest might be easier by comparison.
I think a simple...
YAHOO!!!
Is in order.
Thanks so much for sharing this great news
Joe
Joe
Hi Gabes,
You've always been an expert at planning, organizing, and fulfilling those plans, so I was sure that you would be able to accomplish your goals. It's great to see that you've come so far, especially in the face of all those extra hardships that popped up along the way. It's never easy to stick to a plan, and continue to struggle to reach a goal, when so many things seem to go out of their way to make life more difficult, but you've proven that planning, dedication, and hard work will get the job done, despite all the problems that get in the way.
Thanks for such a motivating update. And thank you for sharing your ups, and your downs, and for showing us Gabe's Way. You're truly an inspiration.
Tex
You've always been an expert at planning, organizing, and fulfilling those plans, so I was sure that you would be able to accomplish your goals. It's great to see that you've come so far, especially in the face of all those extra hardships that popped up along the way. It's never easy to stick to a plan, and continue to struggle to reach a goal, when so many things seem to go out of their way to make life more difficult, but you've proven that planning, dedication, and hard work will get the job done, despite all the problems that get in the way.
Thanks for such a motivating update. And thank you for sharing your ups, and your downs, and for showing us Gabe's Way. You're truly an inspiration.
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.
So great to hear this, Gabes. You have always been such a giving and caring person and have personally inspired me many times.
I really wonder just how many of us who found this place and changed their diets would now test negative for MC. I'm pretty sure that I would.
Connie
I really wonder just how many of us who found this place and changed their diets would now test negative for MC. I'm pretty sure that I would.
Connie
Resolved MC symptoms successfully w/L-Glutamine, Probiotics and Vitamins, GF since 8/'09. DX w/MC 10/'09.
- Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Thank you all for your comments, and for being part of the journey
as I pondered 'life with MC' over my morning coffee, IMO, achieving norman doesnt have to be the main goal or the measurement of success.
and as per a recent discussion there are different opinions about what is normal.
I think the measurement of success is;
being well enough to live life,
being confident enough leave the house wearing white
not having to carry a spare set of clothes in the car,
that Mc Management is melded into your life and not awkward or obvious
as I pondered 'life with MC' over my morning coffee, IMO, achieving norman doesnt have to be the main goal or the measurement of success.
and as per a recent discussion there are different opinions about what is normal.
I think the measurement of success is;
being well enough to live life,
being confident enough leave the house wearing white
not having to carry a spare set of clothes in the car,
that Mc Management is melded into your life and not awkward or obvious
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
Nancy
the cake is the 'orgran vanilla cake mix' which i know is available at a few outlets in the USA (so it is GF/DF/SF and E/F)
the instructions include 165ml of water, i replace some of this with 30grams of pure cocoa butter, 30mls of coconut oil, 30-40grams of grated bonvita chocolate. with all the Orgran cake mixes, if I use some of the cocoa butter, coconut oil, bonvita chocolate, it makes the cake smooth not as gritty.
the cake is the 'orgran vanilla cake mix' which i know is available at a few outlets in the USA (so it is GF/DF/SF and E/F)
the instructions include 165ml of water, i replace some of this with 30grams of pure cocoa butter, 30mls of coconut oil, 30-40grams of grated bonvita chocolate. with all the Orgran cake mixes, if I use some of the cocoa butter, coconut oil, bonvita chocolate, it makes the cake smooth not as gritty.
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
And this is why I love you.Gabes-Apg wrote:Thank you all for your comments, and for being part of the journey
as I pondered 'life with MC' over my morning coffee, IMO, achieving norman doesnt have to be the main goal or the measurement of success.
and as per a recent discussion there are different opinions about what is normal.
I think the measurement of success is;
being well enough to live life,
being confident enough leave the house wearing white
not having to carry a spare set of clothes in the car,
that Mc Management is melded into your life and not awkward or obvious
Resolved MC symptoms successfully w/L-Glutamine, Probiotics and Vitamins, GF since 8/'09. DX w/MC 10/'09.
Gabes, when I am feeling the most down about this illness all I have to do is read one of your posts and I feel better IMMEDIATELY! Your absolute determination to beat this thing, and get in control of it inspires me to keep going.
I am still struggling with GERD and C, with an attack of D for a day or 2 every week or so. The GERD is still bad enough to make me cringe when anything goes down, to wake me at night, and to make me want to run to the drugstore to get some PPIs which would relieve it.
I am taking the Vit D3, the potassium and the calcium religiously, and have been helped immeasurable by it, though it doesn't last nearly long enough yet.
I can't get liquid paraffin (grew up on it) in the states. I am still trying to find a way to get it from Britain or Canada. Nothing I can get here really helps.
Still struggling with exhaustion, muscle pains, brain fog, etc., etc.
Right now I am eating beef, lamb, some turkey and potatoes. Veg, however well cooked, makes the GERD worse, and causes me to bloat and cramp horribly. But I find that if I do NOT eat the GERD gets worse. The best thing to get on top of the GERD is to take the supplements and to eat soon after.
And I agree. The people here on this board, the help, the advice the knowledge shared, the hugs, the laughter and tears, all are super wonderful.
Never ever did I think that I would be discussing poops and pharts in such detail with so many others.
I am still struggling with GERD and C, with an attack of D for a day or 2 every week or so. The GERD is still bad enough to make me cringe when anything goes down, to wake me at night, and to make me want to run to the drugstore to get some PPIs which would relieve it.
I am taking the Vit D3, the potassium and the calcium religiously, and have been helped immeasurable by it, though it doesn't last nearly long enough yet.
I can't get liquid paraffin (grew up on it) in the states. I am still trying to find a way to get it from Britain or Canada. Nothing I can get here really helps.
Still struggling with exhaustion, muscle pains, brain fog, etc., etc.
Right now I am eating beef, lamb, some turkey and potatoes. Veg, however well cooked, makes the GERD worse, and causes me to bloat and cramp horribly. But I find that if I do NOT eat the GERD gets worse. The best thing to get on top of the GERD is to take the supplements and to eat soon after.
And I agree. The people here on this board, the help, the advice the knowledge shared, the hugs, the laughter and tears, all are super wonderful.
Never ever did I think that I would be discussing poops and pharts in such detail with so many others.
you give great hope to me...
i enjoyed hearing your wonderful story/journey. i like that you can look back at the steps you took and say it was all worth it. I am in my first year of gluten free eating and already have experienced great results. My stomach churns less and the gut pain has receded. All this despite my many screw ups at social events. I'm an addict and it's been hard not picking up.
Today, I joined the Occupy Wall Street march in my town and when my friends wanted to go afterwards for brunch I was instead prepared to invite them to my house for home fries, egg substitute, and turkey bacon. I had the potatoes cooked and ready to dice up. My girlfriends liked it too. I'm growing and learning and making changes. That's LIFE!
Today, I joined the Occupy Wall Street march in my town and when my friends wanted to go afterwards for brunch I was instead prepared to invite them to my house for home fries, egg substitute, and turkey bacon. I had the potatoes cooked and ready to dice up. My girlfriends liked it too. I'm growing and learning and making changes. That's LIFE!
CoryGut
Age 71
Diagnosed with Lymphocytic Colitis Sept. 2010
On and off Entocort(Currently Off)
Age 71
Diagnosed with Lymphocytic Colitis Sept. 2010
On and off Entocort(Currently Off)