Hello,
As I stated on 5/26/21, my husband was diagnosed several months ago with MC after taking a study drug for Bladder Cancer.
He is on his second round of Budesonide (because we did not know about this site or diet during that first round, so during weaning of the last week he relapsed). Started diet on 5/9/21 (fourth day into second round).
Now during second round of Budesonide he is tolerating chicken, turkey, potatoes (yellow, red, white and sweet potatoes), squash, olive oil, coconut oil, Rice Chex (we eliminated the Almond milk because he felt bad at least twice afterward), green beans, fresh cooked applesauce, bananas, Olive Oil Potato Chips he dissolves in homemade Bone Broth for flavor and small amounts of regular chicken broth we use on potatoes for flavor. Tried baked speckled trout with a little lemon yesterday. No reactions at this time. He drinks water mostly, a little brewed decaffeinated tea maybe on weekends, 2 ounces at a time of Gatorade a few times. He eats 6 times throughout the day whether we are home or not. He is taking D3 - 5000 IUs morning and evening, B-12 2500 mcg Fast Dissolve with folic acid 400 mcg daily and a magnesium bath every other day.
At least three weeks into 9 mg Budesonide daily he was still having "D". We stopped Imodium and Pepto 5/27/21. By 6/2/21 and every day since, he has had good formed stools. 6/5/21 down to 6 mg/daily. Will confer with GI doctor one week before 7/5/21 to discuss weaning when he is scheduled to go down to 3 mg/daily for 1 month.
He is 5'8" and used to weigh around 150 when MC started but not diagnosed. He stopped the "study drug" in January 2021 when he lost 5 pounds from frequent diarrhea. By 5/6/21 he was 132 pounds and is now 121.5 pounds. He is feeling good enough to go out on one or two hour trips, however, he gains one or two pounds and loses back to 121.5, so not gaining any weight back.
We have both been vaccinated 5/20/21 and 6/10/21 with no side effects for either of us. (Pfizer).
We are sending in his specimen to EnteroLab tomorrow.
Is there anything recommended that we should change, eliminate, or add to the diet in reference to his weight at this time, before we get the results from EnteroLab?
Thank you for any input.
Linda
Where do I start - EnteroLab Results are Depressing!
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Re: Where do I start - EnteroLab Results are Depressing!
Hi Linda,
Reading your post, it looks to me as though you have him on the right track, and recovering well. His diet looks good, but of course the EnteroLab test results should allow you to fine tune that, if needed. All in all, I get the impression that you're doing everything right.
Tex
Reading your post, it looks to me as though you have him on the right track, and recovering well. His diet looks good, but of course the EnteroLab test results should allow you to fine tune that, if needed. All in all, I get the impression that you're doing everything right.
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: Where do I start - EnteroLab Results are Depressing!
Tex,
Thank you so much for the reply. If we have any questions after results we will certainly ask.
We will stay status quo, but I was curious if we could try adding another safe meat to switch between...either grass fed beef, venison or bacon....or too soon?
Thanks again.
Linda
Thank you so much for the reply. If we have any questions after results we will certainly ask.
We will stay status quo, but I was curious if we could try adding another safe meat to switch between...either grass fed beef, venison or bacon....or too soon?
Thanks again.
Linda
Re: Where do I start - EnteroLab Results are Depressing!
Venison is always a safe choice. And virtually no one reacts to lamb. Duck, goose, pheasant, quail, etc., should be safe, also. Shellfish, including shrimp, prawns, mussels, oysters, clams, etc., should be safe also, unless he had an allergy to them before he developed MC.
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: Where do I start - EnteroLab Results are Depressing!
Tex,
Thank you for the reply. He did not have an allergy to shellfish before MC.
We will be careful bringing those in and we will see in a few weeks what his EnteroLab results are.
I worry about the weight fluctuating around 121 to 124.5, but not sticking, not inching up.
Patience is important as long as no other health issue arises. He is eating very well and quite a bit each sitting.
We appreciate you, this support site, and any information or thoughts, anytime!
Linda
Thank you for the reply. He did not have an allergy to shellfish before MC.
We will be careful bringing those in and we will see in a few weeks what his EnteroLab results are.
I worry about the weight fluctuating around 121 to 124.5, but not sticking, not inching up.
Patience is important as long as no other health issue arises. He is eating very well and quite a bit each sitting.
We appreciate you, this support site, and any information or thoughts, anytime!
Linda
Re: Where do I start - EnteroLab Results are Depressing!
I was also down to hide and bones before I started healing so that my digestion improved. That's very, very common with MC , until we get our symptoms under control, so that we're able to absorb the nutrients in our food, again.
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: Where do I start - EnteroLab Results are Depressing!
Hello again....
I was called back to work, so I am a little late getting my husbands Enterolab results posted and hope to get some input or interpretation.
These were A1 and C1. He is weaning off Budesonide with 25 days of 3 mg to go and feeling pretty good, about five weeks of formed stools, but tired.
He is Eating: Chicken, pork, home made chicken bone broth, home made pork bone broth, red potato, yellow potato, minute rice, rice Chex, cashew milk (stopped almond milk), green beans, well cooked apples, bananas, olive oil potato chips, olive oil, coconut oil, D3 5000 2X a day, B12 2500 1X daily and a mag bath every other day. He is eating a lot every meal, every day. It is hard to keep up cooking meat and bone broth.
Any feedback or guidance is appreciated. Thank you!
Linda
Fecal Anti-gliadin IgA 114 Units (Normal Range is less than 10 Units)
Fecal Anti-casein (cow’s milk) IgA 32 Units (Normal Range is less than 10 Units)
Fecal Anti-ovalbumin (chicken egg) IgA 62 Units (Normal Range is less than 10 Units)
Fecal Anti-soy IgA 67 Units (Normal Range is less than 10 Units)
Mean Value 11 Antigenic Foods 57 Units (Normal Range is less than 10 Units)
While all of the foods tested can be immune-stimulating, the hierarchy of reactions detected were as follows:
Food to which there was no significant immunological reactivity: None
Food to which there was some immunological reactivity (1+): None
Food to which there was moderate immunological reactivity (2+): Oat. Rice. Beef. Chicken. Pork. Walnut. Cashew
Food to which there was significant and/or the most immunological reactivity (3+): Corn. Tuna. Almond. White potato
Within each class of foods to which you displayed multiple reactions, the hierarchy of those reactions detected were as follows:
Grains:
Grain toward which you displayed the most immunologic reactivity: Corn
Grain toward which you displayed intermediate immunologic reactivity: Oat
Grain toward which you displayed the least immunologic reactivity: Rice
Meats:
Meat toward which you displayed the most immunologic reactivity: Tuna
Meat toward which you were next most immunologically reactive: Beef
Meat toward which you displayed intermediate immunologic reactivity: Chicken
Meat toward which you displayed the least immunologic reactivity: Pork
Nuts:
Nut toward which you displayed the most immunologic reactivity: Almond
Nut toward which you displayed intermediate immunologic reactivity: Walnut
Nut toward which you displayed the least immunologic reactivity: Cashew
Nightshades:
You displayed immunologic reactivity to white potato, the member of the nightshade family usually consumed most often and in greatest quantities. While this does not necessarily mean you would react to all other nightshade foods (tomatoes, peppers, eggplant), it is possible. In the realm of elimination diets for immunologic disorders, nightshades are usually eliminated as the entire food class (i.e., all four previously mentioned foods in this class). This is especially important to the clinical setting of arthritis.
I was called back to work, so I am a little late getting my husbands Enterolab results posted and hope to get some input or interpretation.
These were A1 and C1. He is weaning off Budesonide with 25 days of 3 mg to go and feeling pretty good, about five weeks of formed stools, but tired.
He is Eating: Chicken, pork, home made chicken bone broth, home made pork bone broth, red potato, yellow potato, minute rice, rice Chex, cashew milk (stopped almond milk), green beans, well cooked apples, bananas, olive oil potato chips, olive oil, coconut oil, D3 5000 2X a day, B12 2500 1X daily and a mag bath every other day. He is eating a lot every meal, every day. It is hard to keep up cooking meat and bone broth.
Any feedback or guidance is appreciated. Thank you!
Linda
Fecal Anti-gliadin IgA 114 Units (Normal Range is less than 10 Units)
Fecal Anti-casein (cow’s milk) IgA 32 Units (Normal Range is less than 10 Units)
Fecal Anti-ovalbumin (chicken egg) IgA 62 Units (Normal Range is less than 10 Units)
Fecal Anti-soy IgA 67 Units (Normal Range is less than 10 Units)
Mean Value 11 Antigenic Foods 57 Units (Normal Range is less than 10 Units)
While all of the foods tested can be immune-stimulating, the hierarchy of reactions detected were as follows:
Food to which there was no significant immunological reactivity: None
Food to which there was some immunological reactivity (1+): None
Food to which there was moderate immunological reactivity (2+): Oat. Rice. Beef. Chicken. Pork. Walnut. Cashew
Food to which there was significant and/or the most immunological reactivity (3+): Corn. Tuna. Almond. White potato
Within each class of foods to which you displayed multiple reactions, the hierarchy of those reactions detected were as follows:
Grains:
Grain toward which you displayed the most immunologic reactivity: Corn
Grain toward which you displayed intermediate immunologic reactivity: Oat
Grain toward which you displayed the least immunologic reactivity: Rice
Meats:
Meat toward which you displayed the most immunologic reactivity: Tuna
Meat toward which you were next most immunologically reactive: Beef
Meat toward which you displayed intermediate immunologic reactivity: Chicken
Meat toward which you displayed the least immunologic reactivity: Pork
Nuts:
Nut toward which you displayed the most immunologic reactivity: Almond
Nut toward which you displayed intermediate immunologic reactivity: Walnut
Nut toward which you displayed the least immunologic reactivity: Cashew
Nightshades:
You displayed immunologic reactivity to white potato, the member of the nightshade family usually consumed most often and in greatest quantities. While this does not necessarily mean you would react to all other nightshade foods (tomatoes, peppers, eggplant), it is possible. In the realm of elimination diets for immunologic disorders, nightshades are usually eliminated as the entire food class (i.e., all four previously mentioned foods in this class). This is especially important to the clinical setting of arthritis.
-
Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Re: Where do I start - EnteroLab Results are Depressing!
Few observations / suggestions based on the results and the eating plan you are currently doing
Chicken is fed alot of grain (soy and gluten) if you can swap across to a more wild game type meat that are generally grass fed you it will provide benefit -
chicken and pork also came up in the moderate reaction so another reason to consider other meat sources.
Given the soy result - I would be cautious about introducing any process food items that may have soy
re the olive oil - are you buying a mainstream common brand or are you buying reliable known producer? reason I ask this, it is common for olive oil to not be 100% olive oil and have fillers such as soy (and given the soy result be super careful of hidden soy!!)
there are better oil options for cooking
Given the potato result- i would forgo the potato chips for now
With the diet changes, did you get new cookware and utensils, chopping boards?? given the high gluten result I would be making sure that food prep and cooking items are all 'gluten free'
I know that this can all be very overwhelming at first. take a deep breath, take it day by day. it takes 3-6 months to get safe ingredients and cooking methods sorted.
I can assure you that the effort (mental, physical and emotional) that you spend sorting out safe eating plan, safe cooking is worth it!! it becomes your foundation for long term wellness.
I am 11.5 years post Dx and as I type this, i have my 'safe staples' cooking in the slow cooker for my meals this week
Chicken is fed alot of grain (soy and gluten) if you can swap across to a more wild game type meat that are generally grass fed you it will provide benefit -
chicken and pork also came up in the moderate reaction so another reason to consider other meat sources.
Given the soy result - I would be cautious about introducing any process food items that may have soy
re the olive oil - are you buying a mainstream common brand or are you buying reliable known producer? reason I ask this, it is common for olive oil to not be 100% olive oil and have fillers such as soy (and given the soy result be super careful of hidden soy!!)
there are better oil options for cooking
Given the potato result- i would forgo the potato chips for now
With the diet changes, did you get new cookware and utensils, chopping boards?? given the high gluten result I would be making sure that food prep and cooking items are all 'gluten free'
I know that this can all be very overwhelming at first. take a deep breath, take it day by day. it takes 3-6 months to get safe ingredients and cooking methods sorted.
I can assure you that the effort (mental, physical and emotional) that you spend sorting out safe eating plan, safe cooking is worth it!! it becomes your foundation for long term wellness.
I am 11.5 years post Dx and as I type this, i have my 'safe staples' cooking in the slow cooker for my meals this week
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Re: Where do I start - EnteroLab Results are Depressing!
Also, the previous issue of the Microscopic Colitis Foundation's Newsletter specifically discusses this subject, so you might find it helpful. Here's a direct link where you can download a copy, if you don't already have one.
https://www.microscopiccolitisfoundatio ... 479987.pdf
When replacing chicken in the diet, turkey is a much safer choice. Virtually no one reacts to turkey, as long as it's not injected with any additives.
Tex
https://www.microscopiccolitisfoundatio ... 479987.pdf
When replacing chicken in the diet, turkey is a much safer choice. Virtually no one reacts to turkey, as long as it's not injected with any additives.
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: Where do I start - EnteroLab Results are Depressing!
Gabes-Apg and Tex,
Thanks so much for the feedback.
I have downloaded and printed the May 2021 Newsletter.
The olive oil: One says Expeller Expressed Extra Virgin Olive Oil. Gluten free.
Ingredients: Extra Virgin Olive Oil. (no other verbiage in the ingredient list.) Bottled and Packaged in Italy.
The olive oil: One says Extra Virgin Olive Oil - No Additives, Chemicals or Propellant, Just The Oil.
Ingredients: Extra Virgin Olive Oil. (no other verbiage in the ingredient list.) Country of Origin Tunisia.
1) Would you say these may be safe or search for other producers?
Both the Chicken and Pork labels say: Fresh Natural, No Antibiotics Ever
Never, Ever Treated with Antibiotics
Never Fed Animal By-Products
No Added Hormones**Ever (I don't remember seeing any notes or explanation for the two asterisks)
No Artificial Ingredients
No Preservatives
2) Would you say there are still hidden items in these products?
We will switch to Turkey and I do have a source for Venison with no seasonings, spices or other meat added.
3) I am overcooking Apples, but it sounds like (from the Newsletter) we need to eliminate these and stay with Bananas only?
4) Can he eat too many bananas....he is really hungry and snacks on bananas a lot.
I have been cautioning him about the Potato Chips, because the Ingredients don't say if these are made from White Potatoes.
5) I guess I can make chips from Red and Yellow potatoes?
Your feedback and answers are deeply appreciated.
Thank you,
Linda
Thanks so much for the feedback.
I have downloaded and printed the May 2021 Newsletter.
The olive oil: One says Expeller Expressed Extra Virgin Olive Oil. Gluten free.
Ingredients: Extra Virgin Olive Oil. (no other verbiage in the ingredient list.) Bottled and Packaged in Italy.
The olive oil: One says Extra Virgin Olive Oil - No Additives, Chemicals or Propellant, Just The Oil.
Ingredients: Extra Virgin Olive Oil. (no other verbiage in the ingredient list.) Country of Origin Tunisia.
1) Would you say these may be safe or search for other producers?
Both the Chicken and Pork labels say: Fresh Natural, No Antibiotics Ever
Never, Ever Treated with Antibiotics
Never Fed Animal By-Products
No Added Hormones**Ever (I don't remember seeing any notes or explanation for the two asterisks)
No Artificial Ingredients
No Preservatives
2) Would you say there are still hidden items in these products?
We will switch to Turkey and I do have a source for Venison with no seasonings, spices or other meat added.
3) I am overcooking Apples, but it sounds like (from the Newsletter) we need to eliminate these and stay with Bananas only?
4) Can he eat too many bananas....he is really hungry and snacks on bananas a lot.
I have been cautioning him about the Potato Chips, because the Ingredients don't say if these are made from White Potatoes.
5) I guess I can make chips from Red and Yellow potatoes?
Your feedback and answers are deeply appreciated.
Thank you,
Linda
-
Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Re: Where do I start - EnteroLab Results are Depressing!
Re the Chicken and Pork
the labelling does not say what they are feeding them - it is very common that they are fed mostly grain based diet, and the cheapest grain stock is soy.
wheat based grain is common in animal foods
that is why we encourage game meats and meat sources that survive on being grass fed.
(even now after many years of stability I can not eat eggs that are fed high amounts of gluten and soy grain)
Hard to comment on individual producers of olive oil products. (and a bit harder for me based in Aus where there is completely different food chain suppliers and labelling) there have been quite a few articles over the past 5 years about producers using low grade fillers. whether that has to be declared on the label or not i am not sure
https://www.forbes.com/sites/ceciliarod ... 9d0a5639d7
A study last year by the National Consumer League found that six of 11 bottles of extra virgin olive oil from three major retailers—Whole Foods, Safeway and Giant—failed to meet extra virgin requirements.
“America is the dumping ground of all those fraudulent operations,” Gaea's David Neuman explained. “There are not enough resources to control the over 350,000 tons of olive oil entering the country. That's why, even after the scandals, adulterated olive oil bottles are still on supermarket shelves.”
if he is hungry - having snacks that include safe protein will help.
is he hungry as he is burning alot of energy with physical work?
or is there a mental/emotional thing? the changes in the eating plan and forgoing what he is used to eating? there can be a slight mental stress of 'what am i going to eat? and this can trigger thought of i am hungry i have to eat.
a big part of the healing journey is the mental and emotional aspects - it is not just what we eat.
the labelling does not say what they are feeding them - it is very common that they are fed mostly grain based diet, and the cheapest grain stock is soy.
wheat based grain is common in animal foods
that is why we encourage game meats and meat sources that survive on being grass fed.
(even now after many years of stability I can not eat eggs that are fed high amounts of gluten and soy grain)
Hard to comment on individual producers of olive oil products. (and a bit harder for me based in Aus where there is completely different food chain suppliers and labelling) there have been quite a few articles over the past 5 years about producers using low grade fillers. whether that has to be declared on the label or not i am not sure
https://www.forbes.com/sites/ceciliarod ... 9d0a5639d7
A study last year by the National Consumer League found that six of 11 bottles of extra virgin olive oil from three major retailers—Whole Foods, Safeway and Giant—failed to meet extra virgin requirements.
“America is the dumping ground of all those fraudulent operations,” Gaea's David Neuman explained. “There are not enough resources to control the over 350,000 tons of olive oil entering the country. That's why, even after the scandals, adulterated olive oil bottles are still on supermarket shelves.”
if he is hungry - having snacks that include safe protein will help.
is he hungry as he is burning alot of energy with physical work?
or is there a mental/emotional thing? the changes in the eating plan and forgoing what he is used to eating? there can be a slight mental stress of 'what am i going to eat? and this can trigger thought of i am hungry i have to eat.
a big part of the healing journey is the mental and emotional aspects - it is not just what we eat.
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Re: Where do I start - EnteroLab Results are Depressing!
Linda,
In the US, here is where you can check the purity of those olive oil brands:
https://www.aboutoliveoil.org/certified-olive-oil-list
Are you aware that sweet potato chips are available?
In general, bananas are a safe food. Some of us can tolerate large numbers of bananas, Others develop histamine symptoms from them because they have a histamine issue, and bananas are a high-histamine food.
Regarding his frequent hunger: I agree with Gabes on the protein. Eating carbs will result in a spike in blood sugar, followed in a couple of hours by low blood sugar (which makes us hungry). Eating protein (and a little fat, if he can digest it), instead, will result in a much more uniform blood sugar level that will last much longer, and postpone hunger.
IOW, snacking on potato chips makes us hungy for more potato chips, relatively soon. Snacking on a pork chop, or venison steak, satiates our hunger much longer (and protein helps us heal, whereas carbs are just empty calories).
Tex
In the US, here is where you can check the purity of those olive oil brands:
https://www.aboutoliveoil.org/certified-olive-oil-list
Are you aware that sweet potato chips are available?
In general, bananas are a safe food. Some of us can tolerate large numbers of bananas, Others develop histamine symptoms from them because they have a histamine issue, and bananas are a high-histamine food.
Regarding his frequent hunger: I agree with Gabes on the protein. Eating carbs will result in a spike in blood sugar, followed in a couple of hours by low blood sugar (which makes us hungry). Eating protein (and a little fat, if he can digest it), instead, will result in a much more uniform blood sugar level that will last much longer, and postpone hunger.
IOW, snacking on potato chips makes us hungy for more potato chips, relatively soon. Snacking on a pork chop, or venison steak, satiates our hunger much longer (and protein helps us heal, whereas carbs are just empty calories).
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: Where do I start - EnteroLab Results are Depressing!
Gabes-Apg and Tex,
Thank you again for this much needed information.
I have printed both links so my husband can read these.
Tex, we are also in south/central Texas and rural, but we mostly have HEB's, Walmart's, Health Food Stores or order online.
1) May we ask where you purchase your Olive Oil (if you use it)?
2) Where can we purchase the Sweet Potato Chips?
My husband does smaller meals throughout the day that consist mostly of what we thought were safe meats, however, we will switch and add turkey or venison. We normally use turkey legs, but we did find ground turkey with no other ingredients listed such as rosemary. Also, he used several potato chips to salt the broth.
Gabes, I did not address the separate utensils/cutting boards you questioned in the previous post. The answer is no, however, I have very little gluten items and are extremely careful in our small kitchen. We each use different utensils. I will get a separate cutting board soon.
Thank you both again!! Any other tips are welcome!!
Linda
Thank you again for this much needed information.
I have printed both links so my husband can read these.
Tex, we are also in south/central Texas and rural, but we mostly have HEB's, Walmart's, Health Food Stores or order online.
1) May we ask where you purchase your Olive Oil (if you use it)?
2) Where can we purchase the Sweet Potato Chips?
My husband does smaller meals throughout the day that consist mostly of what we thought were safe meats, however, we will switch and add turkey or venison. We normally use turkey legs, but we did find ground turkey with no other ingredients listed such as rosemary. Also, he used several potato chips to salt the broth.
Gabes, I did not address the separate utensils/cutting boards you questioned in the previous post. The answer is no, however, I have very little gluten items and are extremely careful in our small kitchen. We each use different utensils. I will get a separate cutting board soon.
Thank you both again!! Any other tips are welcome!!
Linda
Re: Where do I start - EnteroLab Results are Depressing!
I just pick up a safe brand of olive oil at my local, small town grocery store, but larger stores will have a better selection, and I'm sure it's available on Amazon. Most health food stores sell sweet potato chips (and so do some large supermarkets), but often, it's easier to order certain things I need from Amazon, than to search for them locally.
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: Where do I start - EnteroLab Results are Depressing!
Hello again.
Just wanted to let you all know that we did find the AboutOliveOil.org quality seal olive oil in a neighboring town grocery store.
Cut out the Chicken based on suggestion and EnteroLab results. We switch between Pork, Turkey and Venison seasoned only with salt, olive oil and onion that he does not eat...just add for flavor. He has been tolerating onion all along. Homemade Bone Broth from all, regular Broth from all, Red Potatoes, Sweet Potatoes, Sticky Rice, Green Beans, well cooked Carrots and Squash, Rice Chex, Cashew Milk, Bananas, Olive Oil, Coconut Oil and Distilled Water. Tolerated Trout with a little lemon when we had trout. Cut way back on potato chips. He has had small sips of Gatorade, McDonalds Mocha Frappe, and their sweet Tea, also minimal home brewed lightly sweeten tea. Eliminated cooked apples, however, we were given some pears he wanted, so he ate those "over cooked" and in extreme moderation. He has tolerated all of the above including the Chicken, Chicken Broth and Chicken Bone Broth since 6/2/21. Didn't order any sweet potato chips yet.
He takes a Magnesium Bath (Epsom Salt) every other day, 5000 UI D3 twice a day, 1 - B12 chewable once a day.
1 - 20mg Atorvastatin 1X daily; 1 - 5mg Finasteride 1X daily; 1 10mg Loratadine Antihistamine 1X daily; Budesonide on last 2 or 3 capsules
Lookback: Husband has bladder cancer, entered a volunteer drug study and we think the study drug caused MC.
Stopped that injection January 2021 after 5 injections.
8/18/21 bladder was clear.
Still receiving BCG treatments for bladder cancer. 12 to 15 of those so far with about a 2-1/2 to 3 month rest.
Received a treatment today plus a treatment for the next two Tuesdays, then rest again.
Lookback: His first round of Budesonide for MC, with GI docs wean did not work because we did not know about this support group.
First time he skipped 1 pill (3mg) he relapsed. Lost 30 pounds and all muscle mass. Down to 120 pounds.
5/9/21 as suggested on this site, GF, SF, DF and EggF (with second round of Budesonide 9mg) still took 25 days to get formed stools.
He has had formed stools since 6/2/21, about 12 weeks now.
As suggested on this site, he did a much longer, slower wean and has only 2 more 3 mg capsules left.
I think 4 day gaps in between then pray we are done. Weighs 133 now.
Side effects given today: Bloodwork shows High Creatinine so must see small town PCP to see about kidney function.
1) Has anyone had this side effect? We may cut back on meat portion and fill in with safe vegetables? until we get this appointment set.
2) Do you think I can introduce over cooked broccoli or asparagus "after" we see if no relapse when Budesonide is stopped?
Comments, questions and suggestions welcomed.
Thank you!
Linda
Just wanted to let you all know that we did find the AboutOliveOil.org quality seal olive oil in a neighboring town grocery store.
Cut out the Chicken based on suggestion and EnteroLab results. We switch between Pork, Turkey and Venison seasoned only with salt, olive oil and onion that he does not eat...just add for flavor. He has been tolerating onion all along. Homemade Bone Broth from all, regular Broth from all, Red Potatoes, Sweet Potatoes, Sticky Rice, Green Beans, well cooked Carrots and Squash, Rice Chex, Cashew Milk, Bananas, Olive Oil, Coconut Oil and Distilled Water. Tolerated Trout with a little lemon when we had trout. Cut way back on potato chips. He has had small sips of Gatorade, McDonalds Mocha Frappe, and their sweet Tea, also minimal home brewed lightly sweeten tea. Eliminated cooked apples, however, we were given some pears he wanted, so he ate those "over cooked" and in extreme moderation. He has tolerated all of the above including the Chicken, Chicken Broth and Chicken Bone Broth since 6/2/21. Didn't order any sweet potato chips yet.
He takes a Magnesium Bath (Epsom Salt) every other day, 5000 UI D3 twice a day, 1 - B12 chewable once a day.
1 - 20mg Atorvastatin 1X daily; 1 - 5mg Finasteride 1X daily; 1 10mg Loratadine Antihistamine 1X daily; Budesonide on last 2 or 3 capsules
Lookback: Husband has bladder cancer, entered a volunteer drug study and we think the study drug caused MC.
Stopped that injection January 2021 after 5 injections.
8/18/21 bladder was clear.
Still receiving BCG treatments for bladder cancer. 12 to 15 of those so far with about a 2-1/2 to 3 month rest.
Received a treatment today plus a treatment for the next two Tuesdays, then rest again.
Lookback: His first round of Budesonide for MC, with GI docs wean did not work because we did not know about this support group.
First time he skipped 1 pill (3mg) he relapsed. Lost 30 pounds and all muscle mass. Down to 120 pounds.
5/9/21 as suggested on this site, GF, SF, DF and EggF (with second round of Budesonide 9mg) still took 25 days to get formed stools.
He has had formed stools since 6/2/21, about 12 weeks now.
As suggested on this site, he did a much longer, slower wean and has only 2 more 3 mg capsules left.
I think 4 day gaps in between then pray we are done. Weighs 133 now.
Side effects given today: Bloodwork shows High Creatinine so must see small town PCP to see about kidney function.
1) Has anyone had this side effect? We may cut back on meat portion and fill in with safe vegetables? until we get this appointment set.
2) Do you think I can introduce over cooked broccoli or asparagus "after" we see if no relapse when Budesonide is stopped?
Comments, questions and suggestions welcomed.
Thank you!
Linda