My anniversary update.
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
My anniversary update.
Hi all,
Usually at the anniversary of my diagnosis of LC , I get on here and reflect back. I have met a new milestone, since I am almost 10 years post diagnosis- I am happy to report that I feel as good today as I did prior to developing LC. The fine-tuning takes time and persistence and thinking ‘outside of the box’. My message here: don’t give up.
Using the diet plan I found here, I reached remission within 3 years, with biopsies to prove it. But I still had inconsistent gut motility and developed an odd pattern of C for 6-7 days then a day of cramping and numerous bms. I felt horrid on these days and it would often cause me to cancel activities I had planned. Then the pattern started over for the next week. I tried different things for the next 5 years but none had great success and I thought my persistent C pattern was just part of having a damaged gut. The other accompanying features were significant daily fatigue and reflux often with nausea. Fast forward to 2 years ago when I decided to start seeing a functional med doc. We found Mthfr a1298c, Vit D deficiency, and B12 deficiency. While working on those issues I decided to get my Enterolab tests repeated. The unexpected discovery was that I had a fat malabsorption disorder caused by a pancreatic enzyme deficiency. In other words, I can’t breakdown and process fats. With this new info I started taking pancreatic enzymes, cut down the fat in my diet, and now that I’m a few months into this plan the change is remarkable. My fatigue is virtually gone, my gut motility is no longer sluggish, I’m regular for the first time in years, my appetite is back and I enjoy a wider variety of foods now (but will always be gluten free, soy free and dairy free).
While most of us will have fat malabsorption when we flare, it doesn’t usually continue after remission. My pancreatic enzyme deficiency is not typical of MC/LC and took some focused drilling-down to find it.
The bottom line: My fine tuning efforts had to address my unique individual needs after remission and it’s likely yours will too. You may have to look at several trusted sources for help. Don’t give up.
If I hadn’t persisted I would not have reached this point. I truly do feel as good as I did before I was hit with LC and I did not think it would happen....until it did.
All along the way was the never-ending support from Tex, Brandy, Polly, Gabes, and so many others who kept me moving forward even when I felt I was spinning my wheels.
So, this is my ‘anniversary share’ for 2021. Now I really do feel like a success story! What a journey it’s been. Looking forward to the future.
Best wishes to all,
Carol
Usually at the anniversary of my diagnosis of LC , I get on here and reflect back. I have met a new milestone, since I am almost 10 years post diagnosis- I am happy to report that I feel as good today as I did prior to developing LC. The fine-tuning takes time and persistence and thinking ‘outside of the box’. My message here: don’t give up.
Using the diet plan I found here, I reached remission within 3 years, with biopsies to prove it. But I still had inconsistent gut motility and developed an odd pattern of C for 6-7 days then a day of cramping and numerous bms. I felt horrid on these days and it would often cause me to cancel activities I had planned. Then the pattern started over for the next week. I tried different things for the next 5 years but none had great success and I thought my persistent C pattern was just part of having a damaged gut. The other accompanying features were significant daily fatigue and reflux often with nausea. Fast forward to 2 years ago when I decided to start seeing a functional med doc. We found Mthfr a1298c, Vit D deficiency, and B12 deficiency. While working on those issues I decided to get my Enterolab tests repeated. The unexpected discovery was that I had a fat malabsorption disorder caused by a pancreatic enzyme deficiency. In other words, I can’t breakdown and process fats. With this new info I started taking pancreatic enzymes, cut down the fat in my diet, and now that I’m a few months into this plan the change is remarkable. My fatigue is virtually gone, my gut motility is no longer sluggish, I’m regular for the first time in years, my appetite is back and I enjoy a wider variety of foods now (but will always be gluten free, soy free and dairy free).
While most of us will have fat malabsorption when we flare, it doesn’t usually continue after remission. My pancreatic enzyme deficiency is not typical of MC/LC and took some focused drilling-down to find it.
The bottom line: My fine tuning efforts had to address my unique individual needs after remission and it’s likely yours will too. You may have to look at several trusted sources for help. Don’t give up.
If I hadn’t persisted I would not have reached this point. I truly do feel as good as I did before I was hit with LC and I did not think it would happen....until it did.
All along the way was the never-ending support from Tex, Brandy, Polly, Gabes, and so many others who kept me moving forward even when I felt I was spinning my wheels.
So, this is my ‘anniversary share’ for 2021. Now I really do feel like a success story! What a journey it’s been. Looking forward to the future.
Best wishes to all,
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
Re: My anniversary update.
Congratualtions!!!
What an uplifting post, for those of us just starting out on this journey!
I am so happy to read that you feel so great, really gives me hope.
Thank you for continuing to inspire me.
I wish you long lasting good health,Carol!
jen
What an uplifting post, for those of us just starting out on this journey!
I am so happy to read that you feel so great, really gives me hope.
Thank you for continuing to inspire me.
I wish you long lasting good health,Carol!
jen
Re: My anniversary update.
Thanks Jen, it took me awhile. Many people get there sooner I think, but if it feels like ‘slow going’ that doesn’t mean you won’t get there.
My measuring stick these days was when I started working out with a 30 minute walk followed by about 15-20 minutes of weight lifting and I didn’t have to nap afterward. It’s the same workout routine I used 10-12 years ago and I’m able to tackle it without exhausting myself. I honestly did not think I would get to this point—and I was okay with that— then just a few weeks ago realized I had gradually arrived!
The other thing is that I rarely have anxiety anymore. I am a classic example of the influence of the brain-gut connection.
Take care- Carol
My measuring stick these days was when I started working out with a 30 minute walk followed by about 15-20 minutes of weight lifting and I didn’t have to nap afterward. It’s the same workout routine I used 10-12 years ago and I’m able to tackle it without exhausting myself. I honestly did not think I would get to this point—and I was okay with that— then just a few weeks ago realized I had gradually arrived!
The other thing is that I rarely have anxiety anymore. I am a classic example of the influence of the brain-gut connection.
Take care- 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
Re: My anniversary update.
Great post Carol. You've definitely demonstrated that persistence pays off. And you've certainly earned complete remission. Congratulations on your success.
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.
Re: My anniversary update.
Thank you, Tex!
Looking back, I wonder if my pancreatic enzyme deficiency was already happening when I developed LC. There wasn’t a cause-and-effect but I think it was an added complication and that made it hard to separate the two.
I had my daughter complete a DNA test to see if she had two copies of the MTHFR mutation (she has 1), and one thing that showed up was the possibility of developing a syndrome that will not allow her to process fats. I’m pretty sure I know where she inherited that. . Knowledge is power and hopefully knowing these things will help in the long run.
Take care and stay warm! This arctic blast has gripped us here in Kansas City as I know it has in Texas.
Carol
Looking back, I wonder if my pancreatic enzyme deficiency was already happening when I developed LC. There wasn’t a cause-and-effect but I think it was an added complication and that made it hard to separate the two.
I had my daughter complete a DNA test to see if she had two copies of the MTHFR mutation (she has 1), and one thing that showed up was the possibility of developing a syndrome that will not allow her to process fats. I’m pretty sure I know where she inherited that. . Knowledge is power and hopefully knowing these things will help in the long run.
Take care and stay warm! This arctic blast has gripped us here in Kansas City as I know it has in Texas.
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
Re: My anniversary update.
Hi, Carol. Thank you for sharing your wonderful update! I'm so happy that you are feeling so well. Your post will certainly give hope to those who are just starting this journey. I remember how helpful I felt when I first joined this awesome group. While I am in remission some days are better than others with energy, etc. and I will look into some of the things that you mentioned. Take care!
Marcia
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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
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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
Re: My anniversary update.
Hi Carol,
You weren't kidding. We had a huger ice storm followed by 6 or 7 inches of snow, followed by another ice storm. We finally got our power back yesterday, but the power was out, and so was the water, when the temperature got down to two degrees below zero. It will take days to clean up all the broken down tree limbs. I hope your part of the world fared better.
Tex
You weren't kidding. We had a huger ice storm followed by 6 or 7 inches of snow, followed by another ice storm. We finally got our power back yesterday, but the power was out, and so was the water, when the temperature got down to two degrees below zero. It will take days to clean up all the broken down tree limbs. I hope your part of the world fared better.
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.
Re: My anniversary update.
Wow Tex, I meant to ask how you are faring as I've been seeing how bad it is there. I'm glad you finally got your power restored. I feel badly for everyone who has been affected by the storm. It makes me very appreciative of all of the things that I take for granted. Take care!
Marcia
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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
Re: My anniversary update.
Hi Tex,
We fared okay. In Kansas we are used to extremes (although not 10 days of 0 and below temps) and we have snow removal equipment and contingency plans for when power systems get strained (which can happen in summer or winter). There were planned ‘rolling blackouts’ across the metro, lasting from 30-60 minutes, alternating locations for 3-4 days. We were asked to lower our thermostats to 66-68 and not run dishwashers or washers and dryers for a couple of days. I’m sure there were probably people with frozen pipes but in general, it was inconvenient but not devastating like it was in most of Texas. It will take some folks there quite awhile to recover. And the fact that people lost their lives due to this winter storm is heartbreaking.
Glad to hear that you at least have power back on. A warming trend is expected next week and I hope that allows people to get repairs and clean-up done, and get clean water back online.
Stay safe-
Carol
We fared okay. In Kansas we are used to extremes (although not 10 days of 0 and below temps) and we have snow removal equipment and contingency plans for when power systems get strained (which can happen in summer or winter). There were planned ‘rolling blackouts’ across the metro, lasting from 30-60 minutes, alternating locations for 3-4 days. We were asked to lower our thermostats to 66-68 and not run dishwashers or washers and dryers for a couple of days. I’m sure there were probably people with frozen pipes but in general, it was inconvenient but not devastating like it was in most of Texas. It will take some folks there quite awhile to recover. And the fact that people lost their lives due to this winter storm is heartbreaking.
Glad to hear that you at least have power back on. A warming trend is expected next week and I hope that allows people to get repairs and clean-up done, and get clean water back online.
Stay safe-
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
Re: My anniversary update.
Marcia and Carol,
Yep — this far south in Texas we're naive enough to believe that extreme weather such as that only happens way north of here. We had to find out the hard way that's not always true.
Tex
Yep — this far south in Texas we're naive enough to believe that extreme weather such as that only happens way north of here. We had to find out the hard way that's not always true.
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.
Re: My anniversary update.
Congratulations Carol
It's been a while since I visited this site....been doing some experimenting on my own since I explanted July 2019) and I think I am feeling some of the corner turning that you have felt. It's been 6 years this Spring for me since I joined this group and this last year and a half of healing and detoxing from the explant I realize I have more tolerance to things, foods and people, plus I can do more things without fatiguing the energy level is night and day from when I first joined here. Also (because I had to know) I tried a proclaimed heritage hard red winter wheat variety out of Minnesota and can't say I react to it, but at the same time can't prove that it hasn't built up in my system over time since I don't make a meal out of it every day. Anyway I think my knees are finally saying I have some inflammation and I am 53 and have never had this feeling before even pre-LC. So I think another change in diet is calling my name
I am very happy to hear you are having a success story even after all this time....there sure is a lot of learning that goes on individually for us all.
Hugs
Erica
It's been a while since I visited this site....been doing some experimenting on my own since I explanted July 2019) and I think I am feeling some of the corner turning that you have felt. It's been 6 years this Spring for me since I joined this group and this last year and a half of healing and detoxing from the explant I realize I have more tolerance to things, foods and people, plus I can do more things without fatiguing the energy level is night and day from when I first joined here. Also (because I had to know) I tried a proclaimed heritage hard red winter wheat variety out of Minnesota and can't say I react to it, but at the same time can't prove that it hasn't built up in my system over time since I don't make a meal out of it every day. Anyway I think my knees are finally saying I have some inflammation and I am 53 and have never had this feeling before even pre-LC. So I think another change in diet is calling my name
I am very happy to hear you are having a success story even after all this time....there sure is a lot of learning that goes on individually for us all.
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
Re: My anniversary update.
What a fabulous update - thank you for sharing and Happy Anniversary! ;)
I found it interesting that you mentioned that everyone will have a fat malabsorption issue when flaring, as I can't recall having read that before (I am sure I did, but I can't remember) and it makes so much sense. I am currently in a small flare (my first since my initial one) and I noticed that it seemed that I wasn't absorbing fat properly even before I realised it was a flare, as my BMs were sticky and just not right. I had a really bad cold virus and thought it was just that and perhaps everyone with a virus goes through that (I think it has always happened to me when sick), but then it didn't stop. Now having read your post it reminded me of how I was at the beginning and how it did in fact improve (the fat malabsorption), so I have to have hope that this time will be the same.
I found it interesting that you mentioned that everyone will have a fat malabsorption issue when flaring, as I can't recall having read that before (I am sure I did, but I can't remember) and it makes so much sense. I am currently in a small flare (my first since my initial one) and I noticed that it seemed that I wasn't absorbing fat properly even before I realised it was a flare, as my BMs were sticky and just not right. I had a really bad cold virus and thought it was just that and perhaps everyone with a virus goes through that (I think it has always happened to me when sick), but then it didn't stop. Now having read your post it reminded me of how I was at the beginning and how it did in fact improve (the fat malabsorption), so I have to have hope that this time will be the same.