First, I would like to say this forum has been a godsend for me. I started experiencing loose bowels and D last summer(1-2x daily). After testing and a colonoscopy, I was diagnosed with colon cancer and CC. In January I had surgery to remove the tumor(low anterior resection; 6" of colon). Cancer was Stage 1 and required no further treatment. I was overjoyed. I thought I had dodged a bullet. A week after surgery I started experiencing uncontrollable D(12-15x). I didn't know much about MC at the time. In a follow-up with the GI 4 wks ago, I was given a prescription(Uceris) and was told it was my new normal. He said he had never seen a case like mine, tumor and CC. Coming home, I started researching the medication and did not like what I saw(not to mention the cost of the drug, $5000 for 3 months). YIKES. Research continued and I found this community. I have been reading everything since. It has been eye opening(and overwhelming); there is so much information.
I immediately started taking some of the recommendations that everyone has offered. I'm trying to be proactive with this disease.
Diet: Eliminated gluten, dairy, soy, eggs, sweeteners, fiber. (per Gabes) Started elimination diet eating only beef, turkey, pork, cooked carrots, green beans, squash, sweet potato, banana, rice chex and homemade applesauce. Also beef bone broth.
Supplements: I have been taking a multivitamin, COQ10, Vit. C, Super B complex, Glucosamine/MSM. Changed any with the offending ingredients. Changed/Increased Magnesium glycinate 400mg and increased D3 to 5000iu. Also started taking a probiotic(Culterelle). Also taking turmeric for a couple of years.
I send away for the Enterolabs test(A1 &C1) and returned it this week. Waiting on results.
Like most newbies here, I am overwhelmed with what is happening. A part of my life has been taken away from me. I'm also perplexed and angry as to why this is happening. I have been relatively healthy most of my life. Nine years ago I was diagnosed with Stage 1 breast cancer. After surgery, chemo and radiation, I survived and felt great. I changed my diet to a low carb(no flour and sugar, high fiber), didn't eat processed foods and exercised. I'm not a pill popper(although I would occasionally take Advil for Restless Legs).
So far, in the last 3 weeks, not much has changed. I had a couple of good days this week(2-5x D) but today has been difficult. I know I need to be patient(not my strong suit). Whenever I feel bad, I come to this community and read the hopeful messages.
I would appreciate any advise on whether I'm on the right track. Is there anything I've missed? Should I eliminate any supplements? Add anything? There is much to learn here and I'm still discovering.
Again, Thank you for being here. I don't know what I would have done if not for this forum.
Yet Another Newbie...
Hello Alla,
Welcome to our Internet family. Good for you. You are very proactive, and Yes, you are definitely on the right track. The EnteroLab results will tell you if the beef or pork are a problem, otherwise your recovery diet looks good. My main suggestion would be to try a recovery diet without the probiotic. Very, very few of us see any benefits from probiotics or prebiotics, and more than a few of us react adversely to them. Even the American Gastroenterological Association Institute now agrees with us and they have released new guidelines (in December, 2016) that recommend against the use of a probiotic.
http://www.gastrojournal.org/article/S0 ... 1625-X/pdf
I would also recommend that you test your vitamin D blood level because both colon cancer and CC are associated with vitamin D deficiency. If your level is deficient, it might be helpful to double the amount of vitamin D you are taking for a few months. l'm guessing that your restless leg syndrome is better now because that's one of the symptoms of magnesium deficiency.
Again, welcome aboard, and please feel free to ask anything.
Tex
Welcome to our Internet family. Good for you. You are very proactive, and Yes, you are definitely on the right track. The EnteroLab results will tell you if the beef or pork are a problem, otherwise your recovery diet looks good. My main suggestion would be to try a recovery diet without the probiotic. Very, very few of us see any benefits from probiotics or prebiotics, and more than a few of us react adversely to them. Even the American Gastroenterological Association Institute now agrees with us and they have released new guidelines (in December, 2016) that recommend against the use of a probiotic.
http://www.gastrojournal.org/article/S0 ... 1625-X/pdf
I would also recommend that you test your vitamin D blood level because both colon cancer and CC are associated with vitamin D deficiency. If your level is deficient, it might be helpful to double the amount of vitamin D you are taking for a few months. l'm guessing that your restless leg syndrome is better now because that's one of the symptoms of magnesium deficiency.
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.
Thanks for your quick response Tex. I will stop the probiotics, not sure if it did anything anyway. My restless legs have subsided but I had been using magnesium oil prior to my illness. I didn't want to continue taking Advil and research showed the oil would help and it did.(even recommended it to my oncologist who also suffers RLS; don't if he tried it) I'll ask my Dr. to order the D3 deficiency test.
Alla
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Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Welcome Alla
glad you have found this group, the info and discussions helpful.
and you are on the right track - based on what you have shared here are my thoughts on some of the items that may still be causing issues for you
- beef - quite a few MC'ers react to beef, do you know if it is grass fed beef? I ask as we can have reactions to meat /protein products that have been feed high amounts of wheat, sugar, soy, GMO corn based feeds. it is very common for beef to be fed reject batches of cake mix, breakfast cereals and even skittles! moving across to meat sources that are wild caught/game or that only thrive on being grass fed like lamb, venison, etc may work better for you.
- turmeric, this is another item that when we are inflamed in flare status that I have not seen many MC'ers tolerate. I also heard a podcast the other day that for turmeric/ curcumin to help inflammation that it needs other ingredients at the same time to get the anti-inflammatory benefits.
- probioitics which Tex has mentioned and you have replied to
given your enthusiasm for doing the elimination eating plan I would swap out the beef and turmeric.
what type of drinks are you having throughout the day??
as you may have read in some of the posts already, the other aspect for managing flares/inflammation levels is the non food/drink triggers. excess histamine is common, have you been reactive to things like pollen before you got the MC?
stress - whether it be emotional, and/or physical, and/or mental can also be a major trigger. many here have implemented lifestyle changes to reduce stress, do meditative/calming activities and ensure they get good quality rest/sleep etc
hope this helps
glad you have found this group, the info and discussions helpful.
and you are on the right track - based on what you have shared here are my thoughts on some of the items that may still be causing issues for you
- beef - quite a few MC'ers react to beef, do you know if it is grass fed beef? I ask as we can have reactions to meat /protein products that have been feed high amounts of wheat, sugar, soy, GMO corn based feeds. it is very common for beef to be fed reject batches of cake mix, breakfast cereals and even skittles! moving across to meat sources that are wild caught/game or that only thrive on being grass fed like lamb, venison, etc may work better for you.
- turmeric, this is another item that when we are inflamed in flare status that I have not seen many MC'ers tolerate. I also heard a podcast the other day that for turmeric/ curcumin to help inflammation that it needs other ingredients at the same time to get the anti-inflammatory benefits.
- probioitics which Tex has mentioned and you have replied to
given your enthusiasm for doing the elimination eating plan I would swap out the beef and turmeric.
what type of drinks are you having throughout the day??
as you may have read in some of the posts already, the other aspect for managing flares/inflammation levels is the non food/drink triggers. excess histamine is common, have you been reactive to things like pollen before you got the MC?
stress - whether it be emotional, and/or physical, and/or mental can also be a major trigger. many here have implemented lifestyle changes to reduce stress, do meditative/calming activities and ensure they get good quality rest/sleep etc
hope this helps
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Thanks for your response Gabes. The beef and beef bones have been what I can find at the market or had in my freezer so I don't think it's grass fed. I should be able to find some grass fed at our health food markets; it's just been difficult going out these days.
I did some research before starting turmeric a while back and discovered that it requires black pepper (piperine) to be absorbed by the body. I had a warts on my hand before starting turmeric and could not get rid of them despite everything I tried. Soon after starting on turmeric, they faded away and have not come back. Don't know if this was a coincidence but I was excited. I stopped as of this morning, will see what happens. I would appreciate if you can link the podcast you watched. Never hurts to learn something new.
As for drinks, I had been having a cup of coffee(black no cream or sugar) in the morning but I quit 2 days ago. Now it's a mug of tea in the morning and evening and just water the rest of the day.
I've never been reactive to pollen or any allergies.
The stress has been palatable. Aside from the dealing with an entirely new way of life and preparing everything from scratch and the monitoring what I put in my mouth, my husband keeps trying to get to take new things and it's exhausting dealing with that. He has his own medical issues, Parkinson's and heart problems, so it's stress there also. But I have to say whenever I feel down or sorry for myself, I come to this forum and find it therapeutic and comforting. Thank goodness for that.
Oh and I just got my results from Enterolabs, digesting them and will post the results soon. I'm sure I'll have questions.
I did some research before starting turmeric a while back and discovered that it requires black pepper (piperine) to be absorbed by the body. I had a warts on my hand before starting turmeric and could not get rid of them despite everything I tried. Soon after starting on turmeric, they faded away and have not come back. Don't know if this was a coincidence but I was excited. I stopped as of this morning, will see what happens. I would appreciate if you can link the podcast you watched. Never hurts to learn something new.
As for drinks, I had been having a cup of coffee(black no cream or sugar) in the morning but I quit 2 days ago. Now it's a mug of tea in the morning and evening and just water the rest of the day.
I've never been reactive to pollen or any allergies.
The stress has been palatable. Aside from the dealing with an entirely new way of life and preparing everything from scratch and the monitoring what I put in my mouth, my husband keeps trying to get to take new things and it's exhausting dealing with that. He has his own medical issues, Parkinson's and heart problems, so it's stress there also. But I have to say whenever I feel down or sorry for myself, I come to this forum and find it therapeutic and comforting. Thank goodness for that.
Oh and I just got my results from Enterolabs, digesting them and will post the results soon. I'm sure I'll have questions.
Alla
-
Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Alla
depending on how much reading you have done, the suggestions we provide about low inflammation eating plan along with Vit D3 and magnesium will also help your husband and his health issues.
drinks wise - you are doing really really well! I am ok with two black coffee's a day, but others here do have issues with coffee.
I understand it is hard to get out and source 'safe ingredients' when D is happening. sometimes it is worth paying the extra costs to get items delivered. less stress and having reliable products is worth the extra outlay.
Look forward to seeing your enterolab results and seeing if we can help you further
depending on how much reading you have done, the suggestions we provide about low inflammation eating plan along with Vit D3 and magnesium will also help your husband and his health issues.
drinks wise - you are doing really really well! I am ok with two black coffee's a day, but others here do have issues with coffee.
I understand it is hard to get out and source 'safe ingredients' when D is happening. sometimes it is worth paying the extra costs to get items delivered. less stress and having reliable products is worth the extra outlay.
Look forward to seeing your enterolab results and seeing if we can help you further
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Thanks Gabes. I have started giving my husband the magnesium as I read it helps with his heart condition. Now just have to get him to take the D3. It would help if I can get him to do a low inflammation eating plan. It would help him and take the pressure off cooking different meals.
By the way I just posted my results. I've read the report several times and am encouraged. I see the light at the end of the tunnel.
By the way I just posted my results. I've read the report several times and am encouraged. I see the light at the end of the tunnel.
Alla
-
Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
These articles may be of interest to your hubby - that the suggestions made here are not just for MC
long story short - high inflammation in the body depletes Magnesium and Vit D3 - so following low inflammation eating plan is highly beneficial for anyone with ongoing health issues
this one about magnesium
http://www.nutritionalmagnesium.org/mag ... s-disease/
Vit D3
https://www.drperlmutter.com/vitamin-d- ... s-disease/
and these about low inflammation eating
https://www.mindbodygreen.com/0-17100/1 ... sease.html
http://www.foodforthebrain.org/nutritio ... sease.aspx
** modern day wheat has high levels of pesticides - one of the reasons it is highly inflammatory...
long story short - high inflammation in the body depletes Magnesium and Vit D3 - so following low inflammation eating plan is highly beneficial for anyone with ongoing health issues
this one about magnesium
http://www.nutritionalmagnesium.org/mag ... s-disease/
Vit D3
https://www.drperlmutter.com/vitamin-d- ... s-disease/
and these about low inflammation eating
https://www.mindbodygreen.com/0-17100/1 ... sease.html
http://www.foodforthebrain.org/nutritio ... sease.aspx
** modern day wheat has high levels of pesticides - one of the reasons it is highly inflammatory...
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Yes, that effect (from the feed ration) would still be the same, but with your EnteroLab test results I really doubt that you will ever notice any effect from any type of beef, pork, or poultry, regardless of what they have been eating. That's just my opinion, but if you discover that I'm wrong, please don't hesitate to point out to me that I don't know what I'm talking about.Alla wrote:Do chicken and pork have the same grass fed requirements for us? I've been checking on the beef and the prices are pretty steep; may have to stay with chicken and pork.
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.