Worried about rotation
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
I'm so sorry to hear that T! I can so hear the desperation in your voice. After looking at your intolerance list. I can understand your frustration. Sounds like you should make a big pot of beef and vegetable ( potato, carrot, green beans...etc) soup and only eat that for a while. Maybe it will settle things down - especially before you travel.
Please let us know if you start feeling better. I'll be thinking of you
Leah
Please let us know if you start feeling better. I'll be thinking of you
Leah
Hi T,
I'm sorry that you seem to keep slipping back into the rut with depressing regularity. I've been there, and I'll never forget what it's like -- it can be the loneliest, most hopeless feeling in the world. By contrast, once we realize that we have found the key that allows us to get our life back, that can bring the most exhilarating feeling in the world.
The road back to recovery is littered with landmines. One of them is peppers, which are generally contraindicated for anyone with MC until after they have healed.
I know how difficult it can be to feel optimistic when we feel as though the walls are closing in on us, but believe me, attitude and outlook are important for recovery. When we view setbacks as challenges (rather than as failures) it makes us stronger and helps us to think more clearly in our search for solutions. If we view setbacks as failures, it tends to weaken our resolve, and we lose much of our ability to think clearly and to see possible solutions among all the debris.
We understand, and we're all pulling for you. Please don't beat yourself up by having second thoughts. Recovery is almost never easy, but it is definitely always worth all the effort that is required, because getting your life back is your right, and with perseverance, you will find the key.
Tex
I'm sorry that you seem to keep slipping back into the rut with depressing regularity. I've been there, and I'll never forget what it's like -- it can be the loneliest, most hopeless feeling in the world. By contrast, once we realize that we have found the key that allows us to get our life back, that can bring the most exhilarating feeling in the world.
The road back to recovery is littered with landmines. One of them is peppers, which are generally contraindicated for anyone with MC until after they have healed.
I know how difficult it can be to feel optimistic when we feel as though the walls are closing in on us, but believe me, attitude and outlook are important for recovery. When we view setbacks as challenges (rather than as failures) it makes us stronger and helps us to think more clearly in our search for solutions. If we view setbacks as failures, it tends to weaken our resolve, and we lose much of our ability to think clearly and to see possible solutions among all the debris.
We understand, and we're all pulling for you. Please don't beat yourself up by having second thoughts. Recovery is almost never easy, but it is definitely always worth all the effort that is required, because getting your life back is your right, and with perseverance, you will find the key.
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.
Hi T,
I just saw your post and I've flown 8 times since diagnosis (two of these in serious flare) and saw zero issues with high altitude flights so wanted to reassure you about the altitude situation.
I know you've previously asked about medication yet I know your are trying to do this naturally. Perhaps get a prescription for Entocort and carry it around with you as a security blanket even if you don't take it. I think there is one poster who presently has a prescription sitting on her bathroom shelf that she has not started yet and may not ever start. You might feel better having a prescription in your purse in a foreign country even if you don't use it.
Don't give up, it does get better, have a safe trip and give us an update when you return, Brandy
I just saw your post and I've flown 8 times since diagnosis (two of these in serious flare) and saw zero issues with high altitude flights so wanted to reassure you about the altitude situation.
I know you've previously asked about medication yet I know your are trying to do this naturally. Perhaps get a prescription for Entocort and carry it around with you as a security blanket even if you don't take it. I think there is one poster who presently has a prescription sitting on her bathroom shelf that she has not started yet and may not ever start. You might feel better having a prescription in your purse in a foreign country even if you don't use it.
Don't give up, it does get better, have a safe trip and give us an update when you return, Brandy
Hi T,
Like Brandy, I have travelled many times in the 5 years that I've had MC and I've never had any problems. I always keep Imodium on hand just in case. I used it the time that I was stuck on the tarmac for several hours. I hope you can handle Imodium. It is my lifesaver now that Entocort is working minimally. I believe if a medication can help us lead a normal life, we should use it until enough healing takes place and diet takes over. Imodium is safe and cheap. I wish I had used it sooner.
Gloria
Like Brandy, I have travelled many times in the 5 years that I've had MC and I've never had any problems. I always keep Imodium on hand just in case. I used it the time that I was stuck on the tarmac for several hours. I hope you can handle Imodium. It is my lifesaver now that Entocort is working minimally. I believe if a medication can help us lead a normal life, we should use it until enough healing takes place and diet takes over. Imodium is safe and cheap. I wish I had used it sooner.
Gloria
You never know what you can do until you have to do it.
Warning--this post is long--my Memorial Day story.
Thank you for the words of encouragement. It means a lot to me. Also, I appreciate the encouraging words about high-altitude travel. I am nervous about an "attack on high." The Imodium is a good idea and it does work for me. It's the one medication I have used a few times. I probably need to take some now.
I will try to go at it again. I've made it through life with perseverance, so this requires sticking with it day after day. You are right Tex that it's so lonely. Indeed, I think a lot of this discouragement was brought on by Memorial Day. We attended the party with friends that we always attend, every year. Of course, the table is always groaning with food. In the past, I would have felt virtuous as I took the fresh vegetables, blueberries, cantaloupe, and perhaps some cookies and chocolate.
This year, I was sitting about 4 feet away from the table. I never even approached it, but I could see all the healthy food that I used to relish and all the treats. Everyone else was milling around the table, helping themselves to food and desserts and commenting about the deliciousness of the food, complimenting each other on their cooking, etc. My husband, who normally eats with me no matter how boring the menu, had a big plate of food including cookies and cake--why not? It's once a year!
I retreated to the refrigerator where I quietly extracted the cold salmon and potatoes I had brought with me, plus my carrot juice. I wasn't lacking in food to fill up on, but I felt so alone. I feel like I'm looking through a piece of glass when I am at a party. Everyone else is eating socially together and I'm on the other side of the glass. I'm with everyone but really alone. When I go out with friends I pretend to be fine and nonchalant as I pull out my own food while they all eat communally, chatting about the various foods and all tasting together.
All that loneliness on Memorial Day would have been worth it if there had been the slightest B.M. improvement in the morning, but no. Quality of zero again. Things are getting worse and worse, in fact. I can't think what else I can possibly give up. I am going to do what you suggest, Leah, and really scale back--maybe to just 5-6 foods, then try to be patient as long as possible. I also have a doctor appointment in a week or so to discuss medication options. That's super stressful, because doctors usually are not my friends, but I am trying to be more optimistic.
Tex and other old hands, I wonder since you've been at this a long time, can eating an inflammatory food like green peppers leave someone set-back for days and days? Weeks and weeks? I am eating nothing now that I didn't eat back when things were good, so the peppers have to have set off a new inflammatory cycle. Wait, I did add turmeric today. I remember you said it's anti-inflammatory and I thought it might help. Any thoughts?
I am sorry to complain. It really helps to know that people are pulling for me, and I truly believe that you are. I am so grateful that this board exists so that I can talk about these things. And now after all the good advice about food I'll be a lot less likely to try something dangerous like green peppers again!
You know, I really do feel a lot better. What a long-winded message this is! I'm so glad you're all there.
OK. So onward.
Thank you for the words of encouragement. It means a lot to me. Also, I appreciate the encouraging words about high-altitude travel. I am nervous about an "attack on high." The Imodium is a good idea and it does work for me. It's the one medication I have used a few times. I probably need to take some now.
I will try to go at it again. I've made it through life with perseverance, so this requires sticking with it day after day. You are right Tex that it's so lonely. Indeed, I think a lot of this discouragement was brought on by Memorial Day. We attended the party with friends that we always attend, every year. Of course, the table is always groaning with food. In the past, I would have felt virtuous as I took the fresh vegetables, blueberries, cantaloupe, and perhaps some cookies and chocolate.
This year, I was sitting about 4 feet away from the table. I never even approached it, but I could see all the healthy food that I used to relish and all the treats. Everyone else was milling around the table, helping themselves to food and desserts and commenting about the deliciousness of the food, complimenting each other on their cooking, etc. My husband, who normally eats with me no matter how boring the menu, had a big plate of food including cookies and cake--why not? It's once a year!
I retreated to the refrigerator where I quietly extracted the cold salmon and potatoes I had brought with me, plus my carrot juice. I wasn't lacking in food to fill up on, but I felt so alone. I feel like I'm looking through a piece of glass when I am at a party. Everyone else is eating socially together and I'm on the other side of the glass. I'm with everyone but really alone. When I go out with friends I pretend to be fine and nonchalant as I pull out my own food while they all eat communally, chatting about the various foods and all tasting together.
All that loneliness on Memorial Day would have been worth it if there had been the slightest B.M. improvement in the morning, but no. Quality of zero again. Things are getting worse and worse, in fact. I can't think what else I can possibly give up. I am going to do what you suggest, Leah, and really scale back--maybe to just 5-6 foods, then try to be patient as long as possible. I also have a doctor appointment in a week or so to discuss medication options. That's super stressful, because doctors usually are not my friends, but I am trying to be more optimistic.
Tex and other old hands, I wonder since you've been at this a long time, can eating an inflammatory food like green peppers leave someone set-back for days and days? Weeks and weeks? I am eating nothing now that I didn't eat back when things were good, so the peppers have to have set off a new inflammatory cycle. Wait, I did add turmeric today. I remember you said it's anti-inflammatory and I thought it might help. Any thoughts?
I am sorry to complain. It really helps to know that people are pulling for me, and I truly believe that you are. I am so grateful that this board exists so that I can talk about these things. And now after all the good advice about food I'll be a lot less likely to try something dangerous like green peppers again!
You know, I really do feel a lot better. What a long-winded message this is! I'm so glad you're all there.
OK. So onward.
A really irritating food can cause problems for days, but it shouldn't cause symptoms for weeks.
Turmeric normally would be considered to be a safe supplement, because it is known to have anti-inflammatory attributes. However, it's not impossible that it might cause problems for someone with MC because it has a relatively high oxalate content. Oxalates can be a problem for people who have short bowel syndrome. Short bowel syndrome (SBS) normally refers to people who have had significant sections of their intestines removed, and who have problems with diarrhea because of it. (I'm very familiar with it, since I have it, but I probably also had an MC-induced version of SBS back when I was reacting, even though I still had all my guts back then).
IOW, in a sense, many of us have an MC-induced version of SBS because of functional problems such as a severe malabsorption problem caused by massive inflammation. This means that significant sections of our intestines don't function very well, even though they are still present. With SBS, the problem can be caused by foods that have a high oxalate content,such as spinach, rhubarb, cocoa, chocolate, tea, ovaltine, parsley, green beans, collards, kale, turnip greens, beets, sweet potatoes, raw nuts, strawberries and some instant coffees. Note that colas also contain oxalate and should be limited to 12 oz. per day with SBS.
Incidentally, we've discussed oxalates before (years ago) but since it's been a while since we've considered this issue, I'd like to point out to everyone that this may be the reason why some of can't tolerate some of the foods on this list (such as chocolate, sweet potatoes, nuts, etc.), when there is no other logical reason why we shouldn't be able to tolerate them.
And, of course, other foods can promote diarrhea for someone with SBS, including gas-promoting foods such as highly seasoned dishes, fresh fruits, dried beans and peas, broccoli, onions, cauliflower, cabbage, chewing gum, beer, citrus juices and excessive sweets. Sugar alcohols (such as sorbitol, xylitol, and mannitol) also typically cause problems for someone with SBS, just as they cause problems for most of us with MC. Anyway, my point is, you might want to experiment with the turmeric, just in case it might cause problems for you.
I went back and reread your previous posts in this thread, and I noticed that you mentioned that you have hyperthyroidism (well, actually you mentioned that you have more thyroid than you need, so I took that to mean hyperthyroidism). Is it being well-controlled, or have you noticed that some of the symptoms have become more noticeable lately? The reason I ask is because hyperthyroidism can affect BMs (it can cause increased bowel movements). For someone with MC that could be significant.
FWIW, I share your feelings that I'm "on the other side of the glass" at get-togethers that involve food.
I've never really thought about it that way, but you're right -- that's an accurate description of the way I feel in similar situations.
Tex
Turmeric normally would be considered to be a safe supplement, because it is known to have anti-inflammatory attributes. However, it's not impossible that it might cause problems for someone with MC because it has a relatively high oxalate content. Oxalates can be a problem for people who have short bowel syndrome. Short bowel syndrome (SBS) normally refers to people who have had significant sections of their intestines removed, and who have problems with diarrhea because of it. (I'm very familiar with it, since I have it, but I probably also had an MC-induced version of SBS back when I was reacting, even though I still had all my guts back then).
IOW, in a sense, many of us have an MC-induced version of SBS because of functional problems such as a severe malabsorption problem caused by massive inflammation. This means that significant sections of our intestines don't function very well, even though they are still present. With SBS, the problem can be caused by foods that have a high oxalate content,such as spinach, rhubarb, cocoa, chocolate, tea, ovaltine, parsley, green beans, collards, kale, turnip greens, beets, sweet potatoes, raw nuts, strawberries and some instant coffees. Note that colas also contain oxalate and should be limited to 12 oz. per day with SBS.
Incidentally, we've discussed oxalates before (years ago) but since it's been a while since we've considered this issue, I'd like to point out to everyone that this may be the reason why some of can't tolerate some of the foods on this list (such as chocolate, sweet potatoes, nuts, etc.), when there is no other logical reason why we shouldn't be able to tolerate them.
And, of course, other foods can promote diarrhea for someone with SBS, including gas-promoting foods such as highly seasoned dishes, fresh fruits, dried beans and peas, broccoli, onions, cauliflower, cabbage, chewing gum, beer, citrus juices and excessive sweets. Sugar alcohols (such as sorbitol, xylitol, and mannitol) also typically cause problems for someone with SBS, just as they cause problems for most of us with MC. Anyway, my point is, you might want to experiment with the turmeric, just in case it might cause problems for you.
I went back and reread your previous posts in this thread, and I noticed that you mentioned that you have hyperthyroidism (well, actually you mentioned that you have more thyroid than you need, so I took that to mean hyperthyroidism). Is it being well-controlled, or have you noticed that some of the symptoms have become more noticeable lately? The reason I ask is because hyperthyroidism can affect BMs (it can cause increased bowel movements). For someone with MC that could be significant.
FWIW, I share your feelings that I'm "on the other side of the glass" at get-togethers that involve food.
I've never really thought about it that way, but you're right -- that's an accurate description of the way I feel in similar situations.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.
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MaggieRedwings
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HI T,
I also feel like i am on the other side of the glass at functions and that is after 11+ years of this. I have just accepted it and it makes the stress lessen. You are not alone and believe me, all of us are pulling for you.
Love, Maggie
I also feel like i am on the other side of the glass at functions and that is after 11+ years of this. I have just accepted it and it makes the stress lessen. You are not alone and believe me, all of us are pulling for you.
Love, Maggie
Maggie Scarpone
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Resident Birder - I live to bird and enjoy life!
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Resident Birder - I live to bird and enjoy life!
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MaggieRedwings wrote:HI T,
I also feel like i am on the other side of the glass at functions and that is after 11+ years of this. I have just accepted it and it makes the stress lessen. You are not alone and believe me, all of us are pulling for you.
Love, Maggie
Acceptance is the only way to go. Fighting against it just makes it worse because the problem still exists but now you feel awful about having the problem too.. Of course this takes time. My sister and I planned a 90th birthday party for my mother 5 years ago. We planned the menu, and had the kitchen at her independent living facility cater it. There were at least 50 family members and friends there. It was a great day. I ate nothing there. I had traveled down from Vermont to Pennsylvania and brought all my own food with me. Even though I am fairly new here I am not new to food restrictions. I just didn't have sufficient understanding to do it right, but when I wanted to make sure I would be ok for an event I would eat very little and only foods I knew didn't bother me and take immodium. It's just the way it is. It was sure better than missing my mother's 90th birthday party. She was truly touched. Family came from all over the country. She prepared a speech. Shortly after this her dementia began to really take hold so I am so glad we were able to do this for her. My dietary woes pale in comparison to just being able to plan and be present at this event. Remember that this way of eating gives you the gift of health.
Jean
That's a nice way of looking at things Jean :) I try very hard when I am at a function to not draw attention to what I am/not eating. I have gotten to the point where I don't really want to share my issues with everyone. The people I am closest to already know what I must do and I do my best to bring food or eat beforehand and just BE THERE with them to enjoy the event. .... Having said that T, I am feeling much better than you are right now and I know how I feel when I am in a flare. My outlook is not quite as rosie when I don't feel well. I really hope you get to the bottom of why you can't seem improve. Maybe Tex is on to something when he mentioned your thyroid.
Don't apologize for complaining. This is the one place you can. :)
Keep us posted T.
Leah
Don't apologize for complaining. This is the one place you can. :)
Keep us posted T.
Leah
Tex wrote:With SBS, the problem can be caused by foods that have a high oxalate content,such as spinach, rhubarb, cocoa, chocolate, tea, ovaltine, parsley, green beans, collards, kale, turnip greens, beets, sweet potatoes, raw nuts, strawberries and some instant coffees. Note that colas also contain oxalate and should be limited to 12 oz. per day with SBS.
Very interesting, Tex. I can't eat any of those foods, and this may be the explanation. On the other hand, almost any list compiled would be a list of foods I can't eat, so perhaps I shouldn't draw conclusions from it.
T,
Yes, we certainly all feel the "glass wall" as you do. I guess we're just more used to it than you are, but it's still there. Like Leah, I try not to draw attention to my limited food fare. I don't like to discuss it because there are always questions about the nature of my problem and then there are always well-meaning suggestions. It's better to ignore the whole topic, as far as I'm concerned. The key is to focus on and be happy with the foods you can eat and not think about the foods you're missing. That's guaranteed to be a downer road and does nothing to help your situation. In time, you'll be better at accepting it.
Gloria
You never know what you can do until you have to do it.
It's a good thought about the thyroid. Thanks for taking the time to check through my posts, Tex. It's actually a sub-clinical case, though, and never affected the bowel or much else. I just caught it on a routine thyroid test and I take a mini dose of anti-thyroid medication--mostly to protect my bones. The TSH is well into the normal range right now (I just got back my latest test results today). Sadly, the thyroid is not the answer :-(
However, I think you might have solved something again! In an attempt not to eat any white potatoes for a couple of days, I ate sweet potatoes, 2 a day, for the last two days (plus turmeric spice). After lunch yesterday, there was no noise--until I ate the sweet potato. Then it was party time. I wonder if between sweet potatoes and turmeric, I was being afflicted by oxalates? Sweet potatoes out! (temporarily, I hope).
So, here (for my record keeping) are the foods I've chosen for now:
Beef, salmon, peeled potato, squash, zucchini, carrot, broccoli, apple, plum (doesn't bother me if cooked), grape, oregano.
Question: There is no gluten contamination on produce and meat, right? Say it ain't so!
I would love a pointer to the old discussions about oxalates, etc. I am going to have to be a food detective to keep from slipping into the pit over and over again. I'd rather educate myself in advance than try each dangerous food in turn and mess everything up. I would even be willing to volunteer to maintain a page, if people want, that would consolidate this food information from everyone and could serve as a resource for new people, since I'm keeping such a page anyway. Tex, I've added the lists in your post to my spreadsheet. I think education is the only way to step around these landmines.
Acceptance. I definitely believe this is key. My Dad was angry his whole life about his ulcerative colitis. It didn't stop the disease at all, but it sure did make him miserable. I definitely don't want to follow that path. And I have to remember the healing already so far. My old headaches are gone, cankers are gone. There are so many dangers from gluten. I will never go back to eating it. I guess you wouldn't do well if you poisoned yourself every day.
I can't tell you how much it means to me to have everyone cheering me on. I certainly find it helpful and comforting that you all know the score. I have the sense you believe I can do this, and that important to my believing.
--T
However, I think you might have solved something again! In an attempt not to eat any white potatoes for a couple of days, I ate sweet potatoes, 2 a day, for the last two days (plus turmeric spice). After lunch yesterday, there was no noise--until I ate the sweet potato. Then it was party time. I wonder if between sweet potatoes and turmeric, I was being afflicted by oxalates? Sweet potatoes out! (temporarily, I hope).
So, here (for my record keeping) are the foods I've chosen for now:
Beef, salmon, peeled potato, squash, zucchini, carrot, broccoli, apple, plum (doesn't bother me if cooked), grape, oregano.
Question: There is no gluten contamination on produce and meat, right? Say it ain't so!
I would love a pointer to the old discussions about oxalates, etc. I am going to have to be a food detective to keep from slipping into the pit over and over again. I'd rather educate myself in advance than try each dangerous food in turn and mess everything up. I would even be willing to volunteer to maintain a page, if people want, that would consolidate this food information from everyone and could serve as a resource for new people, since I'm keeping such a page anyway. Tex, I've added the lists in your post to my spreadsheet. I think education is the only way to step around these landmines.
Acceptance. I definitely believe this is key. My Dad was angry his whole life about his ulcerative colitis. It didn't stop the disease at all, but it sure did make him miserable. I definitely don't want to follow that path. And I have to remember the healing already so far. My old headaches are gone, cankers are gone. There are so many dangers from gluten. I will never go back to eating it. I guess you wouldn't do well if you poisoned yourself every day.
I can't tell you how much it means to me to have everyone cheering me on. I certainly find it helpful and comforting that you all know the score. I have the sense you believe I can do this, and that important to my believing.
--T
It's certainly possible that between the two of them you may have exceeded your tolerance threshold (at least while your intestines are inflamed).tnelson wrote:I wonder if between sweet potatoes and turmeric, I was being afflicted by oxalates?
Well, we don't generally worry about them, but at least one authority on food sensitivities Dr. John Symes (DogtorJ) believes that secondary gluten transmission can be a problem, especially for people who are extremely sensitive to it. Here's a link where he discusses that concept:tnelson wrote:Question: There is no gluten contamination on produce and meat, right? Say it ain't so!
http://dogtorj.com/what-is-food-intoler ... enization/
More than that, we know you can do it.tnelson wrote:I can't tell you how much it means to me to have everyone cheering me on. I certainly find it helpful and comforting that you all know the score. I have the sense you believe I can do this, and that important to my believing.
Here are links to a few old threads where oxalates were discussed:
http://www.perskyfarms.com/phpBB2/viewt ... ht=oxalate
http://www.perskyfarms.com/phpBB2/viewt ... ht=oxalate
http://www.perskyfarms.com/phpBB2/viewt ... t=oxalates
http://www.perskyfarms.com/phpBB2/viewt ... t=oxylates
http://www.perskyfarms.com/phpBB2/viewt ... t=oxalates
The discussion at that last link reminded me of something that I had forgotten -- oxalates promote the production of histamines in the body. Therefore anyone with mast cell issues should avoid eating foods that are high in oxalate content.
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.