While I don’t post on here much at all, I log in regularly for updates, news and general support. So thank you to all of you for being here!
End June will be a year since I was diagnosed with LC and started Entocort. I then went GF from September 2015 and subsequently started tapering off the Entocort from beginning January 2016. As of May, I am down to 1 tablet every second week. Soon to stop completely and only have the meds on stand-by for a flare up. I’m taking lots of Magnesium and Vit D, which helps a lot, as well as keeping to a relatively strict eating plan of what does and doesn’t work for me. Overall, I am pleased to say that it is much much better! I have only had 1 bad flare up in the last 5 months and that was due to throwing caution to the wind and indulging in a dish of sweet melon. I paid the price and learnt the lesson!
While my BM’s still are not ‘normal’ (not sure if they ever will be again), the urgency is thankfully gone and my toilet trips are now manageable, with no more 2am wakeup’s from hell. I seem to rotate between being constipated for a week or two and then loose stools for the next couple of weeks. Not ideal but still a vast improvement to where I was a year ago. My only real concern now is that I can’t seem to get my energy level back up to where it was. I’m still pretty knackered by the end of each work day and in bed by 8:30pm at the latest. If I do anything physical over and above my normal daily routine (ie go riding with friends or attempt a jog), I’m finished for the next 2 days. I’m also still unable to gain weight, despite eating well and regularly.
Any thoughts on getting the energy level up? I would love to be able to get more active again without feeling like a zombie afterwards.
Thanks in advance
Roxanne
Update and a question on energy levels
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hello Roxanne,
I also alternated between D and C when I was reacting and during my recovery period, at about the same cyclic rate that you mentioned. That pattern finally faded away as my gut healed, but it took a long time. For most of us, our energy is usually one of the last things to return to normal. Brain fog (if you have it) also takes a long time to fade away. Magnesium plays a huge role in energy levels, and for some reason or other, some of us have a lot of trouble absorbing magnesium. And many things deplete it, such as many medications (especially antibiotics, corticosteroids, PPIs, cholestyramine, etc.), coffee, and other things. I also suspect that some of us have a problem absorbing magnesium because of genetics, or possibly methylation issues.
Of course MC itself is probably the biggest energy consumer because our immune system requires most of the energy that we have available just to fight the inflammation in our intestines.
All that said, it sounds as though you are doing all of the most important things to support recovery. It's possible that you may just need more healing time, or there might be something sneaking into your diet to cross-contaminate it. I've had that problem myself in the past. Sometimes we have to recheck everything, to make sure that our diet is actually as safe as we think it is, because some of us can react to the tiniest amounts of cross-contamination, especially if it occurs regularly.
I hope that some of this is helpful.
Tex
I also alternated between D and C when I was reacting and during my recovery period, at about the same cyclic rate that you mentioned. That pattern finally faded away as my gut healed, but it took a long time. For most of us, our energy is usually one of the last things to return to normal. Brain fog (if you have it) also takes a long time to fade away. Magnesium plays a huge role in energy levels, and for some reason or other, some of us have a lot of trouble absorbing magnesium. And many things deplete it, such as many medications (especially antibiotics, corticosteroids, PPIs, cholestyramine, etc.), coffee, and other things. I also suspect that some of us have a problem absorbing magnesium because of genetics, or possibly methylation issues.
Of course MC itself is probably the biggest energy consumer because our immune system requires most of the energy that we have available just to fight the inflammation in our intestines.
All that said, it sounds as though you are doing all of the most important things to support recovery. It's possible that you may just need more healing time, or there might be something sneaking into your diet to cross-contaminate it. I've had that problem myself in the past. Sometimes we have to recheck everything, to make sure that our diet is actually as safe as we think it is, because some of us can react to the tiniest amounts of cross-contamination, especially if it occurs regularly.
I hope that some of this is helpful.
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.
Roxanne,
I about where you are time wise........at the end of June, it will have been one full year for me, and I've been gluten, soy, dairy, and egg free since about the 3rd of July last summer.............I know I'm in remission........I feel better.........I've had no D in ages, and most days, I feel pretty darn good! However, like you, I'm also struggling with my energy level............I keep up with my D3, magnesium, and B vitamins...............
I've chalked it up to the things in our life that we can't control (stress, allergies, etc.).........For me, it's primarily those two things..............I try to keep my stress level even keeled most days, but when I don't, I can certainly tell a difference............and this has been one of the worst years for allergies that I can ever remember!
I often take a little power nap early evening, and I'm still in bed around 8 or 8:30.......9:00 is late for me! :) I've learned to just go with the flow and I'm a powerhouse in the morning, and by late afternoon, I'm a wilting flower.
I just don't know if I'll ever get my energy totally back, but in the meantime, I'm thankful to be feeling good and able to do most everything again!
I about where you are time wise........at the end of June, it will have been one full year for me, and I've been gluten, soy, dairy, and egg free since about the 3rd of July last summer.............I know I'm in remission........I feel better.........I've had no D in ages, and most days, I feel pretty darn good! However, like you, I'm also struggling with my energy level............I keep up with my D3, magnesium, and B vitamins...............
I've chalked it up to the things in our life that we can't control (stress, allergies, etc.).........For me, it's primarily those two things..............I try to keep my stress level even keeled most days, but when I don't, I can certainly tell a difference............and this has been one of the worst years for allergies that I can ever remember!
I often take a little power nap early evening, and I'm still in bed around 8 or 8:30.......9:00 is late for me! :) I've learned to just go with the flow and I'm a powerhouse in the morning, and by late afternoon, I'm a wilting flower.
I just don't know if I'll ever get my energy totally back, but in the meantime, I'm thankful to be feeling good and able to do most everything again!
Jari
Diagnosed with Collagenous Colitis, June 29th, 2015
Gluten free, Dairy free, and Soy free since July 3rd, 2015
Diagnosed with Collagenous Colitis, June 29th, 2015
Gluten free, Dairy free, and Soy free since July 3rd, 2015
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Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
well done on your progress thus far!
energy wise, this is a tricky area as it can be soo many things... and there is no easy way or tests to confirm exactly what it might be.
some ideas to ponder
one common issues amongst those with chronic illness, is adrenal fatigue
http://www.amymyersmd.com/2013/10/every ... l-fatigue/
this is a good article to read and see what you think...
(there are saliva tests to check for adrenal fatigue)
Dr Wahl talks a bit about mitochrondria in her books etc
here is a starting article to see what you think
https://experiencelife.com/article/the- ... ochondria/
long story short, you have to listen to your body fine tune your eating plan to eat what suits your body best
(easier said than done I know... but we are getting into the nitty gritty of cell health here!)
for me increased energy came when I fixed the magnesium deficiency first off - and later when I resolved methylation issues and resolved CoQ10 deficiency (which is linked to my non MC health issues)
when i checked the nutrient bible (nutritional textbook used by naturopaths/nutritionists etc) and looked up fatigue
it can a deficiency of any, some or all of the following
CoEnzyme Q10, Folic Acid, methionine, B12, B5, B6, C, magnesium, carnitine, B1, glycine, leucine, iodine, iron, phosphate, potassium
things like iodine are linked to thyroid imbalance
(checking iodine level can be done with not too expensive (ie $60) iodine urine test
Have you had your blood levels checked in the last 3-6 months for B12, iron, Vit D etc?
it will be a process of elimination type thing to figure out your root cause of energy issues, each person is different. so many things can affect root cause deficiencies, where you grew up, where you work, climate, other health issues etc
given your reaction to the bike ride my top pick would be Adrenals,
then B group, iodine, CoQ10...
energy wise, this is a tricky area as it can be soo many things... and there is no easy way or tests to confirm exactly what it might be.
some ideas to ponder
one common issues amongst those with chronic illness, is adrenal fatigue
http://www.amymyersmd.com/2013/10/every ... l-fatigue/
this is a good article to read and see what you think...
(there are saliva tests to check for adrenal fatigue)
Dr Wahl talks a bit about mitochrondria in her books etc
here is a starting article to see what you think
https://experiencelife.com/article/the- ... ochondria/
long story short, you have to listen to your body fine tune your eating plan to eat what suits your body best
(easier said than done I know... but we are getting into the nitty gritty of cell health here!)
for me increased energy came when I fixed the magnesium deficiency first off - and later when I resolved methylation issues and resolved CoQ10 deficiency (which is linked to my non MC health issues)
when i checked the nutrient bible (nutritional textbook used by naturopaths/nutritionists etc) and looked up fatigue
it can a deficiency of any, some or all of the following
CoEnzyme Q10, Folic Acid, methionine, B12, B5, B6, C, magnesium, carnitine, B1, glycine, leucine, iodine, iron, phosphate, potassium
things like iodine are linked to thyroid imbalance
(checking iodine level can be done with not too expensive (ie $60) iodine urine test
Have you had your blood levels checked in the last 3-6 months for B12, iron, Vit D etc?
it will be a process of elimination type thing to figure out your root cause of energy issues, each person is different. so many things can affect root cause deficiencies, where you grew up, where you work, climate, other health issues etc
given your reaction to the bike ride my top pick would be Adrenals,
then B group, iodine, CoQ10...
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Tex, Jari, Gabes, thank you so much for the feedback! It helps to know that I am on the right track and what I am experiencing is normal.
Jari,
I think you hit the nail on the head with stress and allergies. Thanks to my job (I'm in a production environment, never a dull moment), and living/working in an area surrounded by working farms, I suffer from occasional flares of both stress and allergies (especially when they spray the crops). But as Tex mentioned, I do believe that it now comes down to giving ourselves more time to heal and to keep our stress levels down as much as possible. I am also just incredibly grateful to be feeling better and able to do most normal things again! I'm glad that you are feeling better too :)
Tex/Gabes,
I'm definitely going to look into possible cross contamination (I still get the brain fog, suspect now that might be due to cross contamination) and it's definitely worth getting my adrenals checked, as well as getting bloods checked for B12, iron etc. I haven't had these checked in the last 6 months, so I am due again. I actually chatted to my GP about this yesterday (he is more interested and involved than my specialist...) and he also suggested I look at my calorie intake. Since cutting out gluten and most high fat/oil foods, he suspects this might also be where I am lacking diet wise. I also think I'm going to increase my magnesium even more now that I am almost completely off of the Entocort.
Gabes, thank you for the articles! Have you perhaps tried any Adaptogenic herbs for adrenal fatigue? I'm always keep to try the natural route and this sounds like it is worth trying.
Again, thank you all! It helps so much to be able to speak to people with personal experience :)
Jari,
I think you hit the nail on the head with stress and allergies. Thanks to my job (I'm in a production environment, never a dull moment), and living/working in an area surrounded by working farms, I suffer from occasional flares of both stress and allergies (especially when they spray the crops). But as Tex mentioned, I do believe that it now comes down to giving ourselves more time to heal and to keep our stress levels down as much as possible. I am also just incredibly grateful to be feeling better and able to do most normal things again! I'm glad that you are feeling better too :)
Tex/Gabes,
I'm definitely going to look into possible cross contamination (I still get the brain fog, suspect now that might be due to cross contamination) and it's definitely worth getting my adrenals checked, as well as getting bloods checked for B12, iron etc. I haven't had these checked in the last 6 months, so I am due again. I actually chatted to my GP about this yesterday (he is more interested and involved than my specialist...) and he also suggested I look at my calorie intake. Since cutting out gluten and most high fat/oil foods, he suspects this might also be where I am lacking diet wise. I also think I'm going to increase my magnesium even more now that I am almost completely off of the Entocort.
Gabes, thank you for the articles! Have you perhaps tried any Adaptogenic herbs for adrenal fatigue? I'm always keep to try the natural route and this sounds like it is worth trying.
Again, thank you all! It helps so much to be able to speak to people with personal experience :)
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Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
not herbs persay... moreso looking at key nutrients/vitamins like B6 Vit C, magnesium, potassium, manganese etc. and the methylation cycle.
if the methylation cycle is 'in flow' there is less strain on adrenal reactions.
the other thing that helps adrenal fatigue is reducing inflammation, relaxation and meditation, having quality relax time, no EMF/WIFI, time in nature, calming the mind and the body etc.
for whatever reason, i can not tolerate herbs since having MC. prior to MC I used potent liquid herbs alot, had no issues... now I struggle quite a bit
not sure if it is a MC thing or just me...
checking the bloods via the GP is a good idea.. and if there are no indicators in those, then consider adrenal testing
good luck!
if the methylation cycle is 'in flow' there is less strain on adrenal reactions.
the other thing that helps adrenal fatigue is reducing inflammation, relaxation and meditation, having quality relax time, no EMF/WIFI, time in nature, calming the mind and the body etc.
for whatever reason, i can not tolerate herbs since having MC. prior to MC I used potent liquid herbs alot, had no issues... now I struggle quite a bit
not sure if it is a MC thing or just me...
checking the bloods via the GP is a good idea.. and if there are no indicators in those, then consider adrenal testing
good luck!
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, thank you! I am going to read up more on the methylation cycle and take it from there :)
I am making an effort to have more quiet relax time. I now switch the phone off in the evenings (less distractions) and have also started playing around with adult coloring in books. Sounds daft but it's a great way to switch off from everything around you and get creative. Weekends are mainly quiet. I breed finches (one main one being your beautiful Gouldian finch), so I spend a lot of time in the garden fiddling with the birds in the aviaries and playing with my dogs.
The big pain is my social life though. My friends think I am being anti-social and don't understand that I just don't have the energy for doing day trips or evening functions. But right now, getting my health back on track is more important than socializing, so they must just deal with my absence from high energy events.
I am making an effort to have more quiet relax time. I now switch the phone off in the evenings (less distractions) and have also started playing around with adult coloring in books. Sounds daft but it's a great way to switch off from everything around you and get creative. Weekends are mainly quiet. I breed finches (one main one being your beautiful Gouldian finch), so I spend a lot of time in the garden fiddling with the birds in the aviaries and playing with my dogs.
The big pain is my social life though. My friends think I am being anti-social and don't understand that I just don't have the energy for doing day trips or evening functions. But right now, getting my health back on track is more important than socializing, so they must just deal with my absence from high energy events.
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Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
far far from being daft!! I love my adult colouring in books! have been doing them for over 12 months. night time i play podcasts/audiobooks etc and do colouring in.
i have a fantastic book at the moment that is birds on bloomed flowers! I have been copying the pages to do the colouring so i can keep the originals in the book.
how wonderful that you breed gouldian finches.. I live semi-rural and am surrounded by lots of aussie native birds.
the social life thing is 'tricky' my MC and chronic illness journey was a major filter in my life. I distanced myself from toxic people and those that 'didnt get it.
and I value the ones that have embraced my modified lifestyle.
The occasional car show every month or two months is enough for me!
listen to your heart and nurture you body and soul
healing hugs
i have a fantastic book at the moment that is birds on bloomed flowers! I have been copying the pages to do the colouring so i can keep the originals in the book.
how wonderful that you breed gouldian finches.. I live semi-rural and am surrounded by lots of aussie native birds.
the social life thing is 'tricky' my MC and chronic illness journey was a major filter in my life. I distanced myself from toxic people and those that 'didnt get it.
and I value the ones that have embraced my modified lifestyle.
The occasional car show every month or two months is enough for me!
listen to your heart and nurture you body and soul
healing hugs
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Rox, adult coloring certainly isn't daft! I find it very relaxing. In fact I haven't bought an adult coloring book yet, I've been using a child's book that I bought for $1.00 at CVS. After coloring with my niece on Christmas Eve I realized how relaxing coloring is. I plan to purchase an adult coloring book now. Whatever it takes to help you on your journey to health is what you need to do. I find that's one of the perks of getting older - I do what I need to do and really don't worry what anyone thinks. I still have the same friends as before but I don't do as much with them. So many things involve eating out before/after and I just don't want to deal with that all of the time.
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
Gabes and Marcia, I'm so glad to hear of others enjoying coloring in! I am thoroughly loving it and my pencil collection is growing 
Gabes, you are spot on with illness (or any other major life changing event) being a 'filter' for people in your life. You definitely end up knowing where you stand with your friends and who is in it for the long haul. I'm just grateful for the few that have stuck it out with me. Those ones are the keepers
Gabes, you are spot on with illness (or any other major life changing event) being a 'filter' for people in your life. You definitely end up knowing where you stand with your friends and who is in it for the long haul. I'm just grateful for the few that have stuck it out with me. Those ones are the keepers
I color too!... 
I love working with colors....music...quiet time.
My body can certainly tell when I am about to embark on something and when I don't have to think or plan on anything.
Erica
I love working with colors....music...quiet time.
My body can certainly tell when I am about to embark on something and when I don't have to think or plan on anything.
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