New Member - Question regarding expectations for recovery
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New Member - Question regarding expectations for recovery
I am new to this forum and discovered it through Mr. Persky's book, which I've just started reading. I was diagnosed last month, but I have been having symptoms (chronic watery diarrhea, gas, cramps, fatigue) since the beginning of June and continue to have them. I have been on an elimination diet - "Stage 2" from the book "The Inside Tract" by Mullin and Swift - for a week but I am not seeing any improvement. I have eliminated dairy, eggs, wheat, gluten, corn, peanuts, shellfish, alcohol and coffee. I also have been diagnosed with Lupus, Sjogren's, ITP (low platelets), Fibromyalgia, and IBS (2007). I am at my wits-end because I have yet another autoimmune problem that no one has any answers or solutions for. I feel like I'm tied to my bathroom, I can't eat the foods I like, I can't go out to socialize with friends, I'm hungry all the time because I don't particularly like the food I CAN eat and the list goes on. My friends tell me they hope I "get better soon so we can go out" when going out is totally out of the question right now, let alone food, drinks, or anything else a restaurant has to offer. I don't even know if the food I'm eating is aggravating my condition, or if its helping - how the heck do you tell?? What is the time frame you are supposed to use? The book says if I don't see improvement in two weeks to continue the diet another two weeks, and then another two weeks and if by the end of two months it's not any better, then go on "Track 3" which is even more restrictive. I tried the Track 3 for two days and I couldn't take it anymore because the diarrhea was even worse (I think way too many vegetables!!!). I'm a vegetarian (but I do eat fish - so a "pescatarian"). The literature I have read is all oriented towards those "other" IBD problems, so I don't even know if the diet I'm currently on is helping or hurting me. I'm VERY confused. My immediate family is not much help either - they seem to think I'm going to be better in a matter of "weeks" - which would be great, if I thought that was even remotely possible. I'm not on any meds for the MC, except OTC Immodium. Any guidance or suggestions would be appreciated. I know the answers to my questions are somewhere on this forum, but I don't know where to look. Please help, I'm desperate.
Diagnosed July2014
Hi Kimberly,
Welcome to our internet family. We consider ourselves a family because no one truly understands this disease unless they have it, so we share a unique bond that allows us to understand what everyone else here is going through. I'm sorry to hear that you have already developed more than your fair share of autoimmune diseases. As you are probably well aware, AI diseases lead to additional AI diseases. The good news is that many of us here have found that by eliminating all of our food sensitivities from our diet in order to control our MC symptoms, most of our other symptoms also tend to improve, and in some cases many of them completely resolve.
I'm not familiar with that particular elimination diet, but it sounds as though you are on the right track to get your health back under control. We have found that when our gut is hypersensitive, in additional to totally avoiding the foods that you mentioned, we also have to minimize fiber in our diet (because fiber is very abrasive to an inflamed gut), and we have to avoid all artificial sweeteners, and minimize sugar (fructose and sorbitol are particularly prone to causing fermentation problems in our intestines).
You might not have to avoid coffee. If coffee promptly sent you to the bathroom before you developed digestive issues, then it will continue to do so, so you should avoid it. But most of us here find that if coffee did not bother us prior to the onset of our MC symptoms, then we can probably tolerate it now. Doctors recommend cutting it out (probably) because it is a secretagogue, and the type of diarrhea associated with this disease is known as secretory diarrhea. But that recommendation seems to be based on a confused assumption. The bottom line is that most of us here are able to drink coffee without incident, as long we don't put anything in it that might cause us to react (and that means no coffee-mate, for example).
Most fruits pose a double whammy, because they are loaded with both fructose and sorbitol, and they contain a lot of fiber (especially the peel). If we eat any fruit at all, it should be in small portions, peeled (to get rid of most of the fiber) and over-cooked to make it more digestible. Bananas are an exception — most of us can tolerate bananas raw, as long as we don't overdo them. Vegetables also have to be in small portions (because of the fiber) and over-cooked.
Certain veggies such as iceberg lettuce have to be totally avoided (iceberg lettuce seems to be the most irritating vegetable we can eat), and many/most of us have to also avoid onions, chilies, and many other vegetables. Nightshades can be a problem for some us, but not for others. It's not that the vegetables cause us to produce antibodies (as is the case with gluten, dairy, soy, eggs, etc.), but they simply keep the gut inflamed because of the fiber and/or sugar content, so that it cannot heal. After we are in remission, most of us can add many of those foods back into our diet (slowly and carefully, of course).
Without anti-inflammatory medications to mask the symptoms, it usually takes at least several months for the diet changes to bring remission, and some of us take longer (although a few lucky souls are able to reach remission in a matter of a few weeks). For those of us who have a lot of intestinal damage, because we have been reacting for years, or because we have extremely severe symptoms, it can take 6 months to a year or more. Healing requires above average amounts of protein, and it tends to take much, much longer for the intestines to heal than most people (and virtually all doctors) realize. But if we carefully follow a diet that is custom tailored to our needs (since we are all different), and provided that we don't give up prematurely, we can stop the inflammation, allow our gut to heal, and get our life back. It all can seem overwhelming at first, because a lot is involved, but it's doable, and by living one day at a time, and paying attention to details, and learning from each other, we can get our life back. If it were easy, the doctors could do it, but most of us are here because our doctors couldn't help us, so we compare notes and help each other.
Recovery is rarely continuous — it's more like 2 steps forward and 1 step backward, especially early on. On this board we share our good days and our bad days, and we celebrate small victories. And with support from others, and hard work and dedication, the bad days gradually become fewer and farther between, and they are less "bad" when they do happen. I hope that I haven't discouraged you by making the recovery process appear to be more trouble than it's worth, because it's definitely worth everything that we put into it. "The most empowering feeling in the world" is the best way to describe how we feel when the day finally arrives that we wake up and realize that we feel better than we have felt in probably 20 or 30 years. Life is good. We just have to make some changes that will allow us to get it back.
Again, welcome aboard, and please feel free to ask anything.
Tex
Welcome to our internet family. We consider ourselves a family because no one truly understands this disease unless they have it, so we share a unique bond that allows us to understand what everyone else here is going through. I'm sorry to hear that you have already developed more than your fair share of autoimmune diseases. As you are probably well aware, AI diseases lead to additional AI diseases. The good news is that many of us here have found that by eliminating all of our food sensitivities from our diet in order to control our MC symptoms, most of our other symptoms also tend to improve, and in some cases many of them completely resolve.
I'm not familiar with that particular elimination diet, but it sounds as though you are on the right track to get your health back under control. We have found that when our gut is hypersensitive, in additional to totally avoiding the foods that you mentioned, we also have to minimize fiber in our diet (because fiber is very abrasive to an inflamed gut), and we have to avoid all artificial sweeteners, and minimize sugar (fructose and sorbitol are particularly prone to causing fermentation problems in our intestines).
You might not have to avoid coffee. If coffee promptly sent you to the bathroom before you developed digestive issues, then it will continue to do so, so you should avoid it. But most of us here find that if coffee did not bother us prior to the onset of our MC symptoms, then we can probably tolerate it now. Doctors recommend cutting it out (probably) because it is a secretagogue, and the type of diarrhea associated with this disease is known as secretory diarrhea. But that recommendation seems to be based on a confused assumption. The bottom line is that most of us here are able to drink coffee without incident, as long we don't put anything in it that might cause us to react (and that means no coffee-mate, for example).
Most fruits pose a double whammy, because they are loaded with both fructose and sorbitol, and they contain a lot of fiber (especially the peel). If we eat any fruit at all, it should be in small portions, peeled (to get rid of most of the fiber) and over-cooked to make it more digestible. Bananas are an exception — most of us can tolerate bananas raw, as long as we don't overdo them. Vegetables also have to be in small portions (because of the fiber) and over-cooked.
Certain veggies such as iceberg lettuce have to be totally avoided (iceberg lettuce seems to be the most irritating vegetable we can eat), and many/most of us have to also avoid onions, chilies, and many other vegetables. Nightshades can be a problem for some us, but not for others. It's not that the vegetables cause us to produce antibodies (as is the case with gluten, dairy, soy, eggs, etc.), but they simply keep the gut inflamed because of the fiber and/or sugar content, so that it cannot heal. After we are in remission, most of us can add many of those foods back into our diet (slowly and carefully, of course).
Without anti-inflammatory medications to mask the symptoms, it usually takes at least several months for the diet changes to bring remission, and some of us take longer (although a few lucky souls are able to reach remission in a matter of a few weeks). For those of us who have a lot of intestinal damage, because we have been reacting for years, or because we have extremely severe symptoms, it can take 6 months to a year or more. Healing requires above average amounts of protein, and it tends to take much, much longer for the intestines to heal than most people (and virtually all doctors) realize. But if we carefully follow a diet that is custom tailored to our needs (since we are all different), and provided that we don't give up prematurely, we can stop the inflammation, allow our gut to heal, and get our life back. It all can seem overwhelming at first, because a lot is involved, but it's doable, and by living one day at a time, and paying attention to details, and learning from each other, we can get our life back. If it were easy, the doctors could do it, but most of us are here because our doctors couldn't help us, so we compare notes and help each other.
Recovery is rarely continuous — it's more like 2 steps forward and 1 step backward, especially early on. On this board we share our good days and our bad days, and we celebrate small victories. And with support from others, and hard work and dedication, the bad days gradually become fewer and farther between, and they are less "bad" when they do happen. I hope that I haven't discouraged you by making the recovery process appear to be more trouble than it's worth, because it's definitely worth everything that we put into it. "The most empowering feeling in the world" is the best way to describe how we feel when the day finally arrives that we wake up and realize that we feel better than we have felt in probably 20 or 30 years. Life is good. We just have to make some changes that will allow us to get it back.
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.
Welcome! (Although I'm sorry you had to find the forum!)
I can totally relate to trying diet changes and having no idea if it was helping or not. I started messing with my diet way before I was even diagnosed with MC. Things are better for me now, but I don't know what made the difference -- I was trying anything and everything I could think of! :) I did have a round of antibiotics to treat H. Pylori (bacteria that was irritating my stomach) and I took Pepto Bismol for a few weeks until things started getting better. I'm sorry that I don't have advice that's super helpful, but know that you're not alone in your frustration!
I'm not familiar with that particular book, but one thought I did have is to be careful with how many vegetables you're eating (and be sure to cook them really well). Too much fiber from veggies (or raw veggies) can be hard on the inflamed gut -- as it sounds like you've noticed. :)
Kristen
I can totally relate to trying diet changes and having no idea if it was helping or not. I started messing with my diet way before I was even diagnosed with MC. Things are better for me now, but I don't know what made the difference -- I was trying anything and everything I could think of! :) I did have a round of antibiotics to treat H. Pylori (bacteria that was irritating my stomach) and I took Pepto Bismol for a few weeks until things started getting better. I'm sorry that I don't have advice that's super helpful, but know that you're not alone in your frustration!
I'm not familiar with that particular book, but one thought I did have is to be careful with how many vegetables you're eating (and be sure to cook them really well). Too much fiber from veggies (or raw veggies) can be hard on the inflamed gut -- as it sounds like you've noticed. :)
Kristen
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Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Kim
we have all faced some tough days, weeks, months with MC.
Read through the posts aimed at newbies, this will provide alot of good basic info that will help and give you some guidance, and you will see some discussions with other newbies that will also help.
breathe, there are many of us (including me) that have multiple AutoImmune issues, wellness is very possible, it is all about diet, minimising inflammation, healing the gut, fixing nutritional deficiencies.
the sad reality, is that there is no quick fix or guaranteed solution that works for everyone. It takes a bit of time, focus and energy to figure out what works best for you. Dont let this overwhelm you, there are shortcuts based on the learnings of all the people here, and a wonderful group of people that are willing to help and support you on your journey to wellness
healing hugs
take care
we have all faced some tough days, weeks, months with MC.
Read through the posts aimed at newbies, this will provide alot of good basic info that will help and give you some guidance, and you will see some discussions with other newbies that will also help.
breathe, there are many of us (including me) that have multiple AutoImmune issues, wellness is very possible, it is all about diet, minimising inflammation, healing the gut, fixing nutritional deficiencies.
the sad reality, is that there is no quick fix or guaranteed solution that works for everyone. It takes a bit of time, focus and energy to figure out what works best for you. Dont let this overwhelm you, there are shortcuts based on the learnings of all the people here, and a wonderful group of people that are willing to help and support you on your journey to wellness
healing hugs
take care
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Thank You & Another Question :-)
Tex, Kristen & Gabes,
Thank you all so much for your responses & encouragement. I have felt so alone in all of this b/c no one "gets" what this is like. I feel better just knowing that I have some understanding people to converse with as well as an abundance of good, reliable information.
Of course, I have another question!
My doctor suggested Pepto & Immodium to help w/symptoms before going the steroid route. I tried Pepto & it doesn't help, but Immodium does. While I am eating what I hope are healing foods while avoiding the irritating ones, should I take the Immodium so I can get out of the house more even though it will "mask" my symptoms? The reason I have only been taking it when I HAVE to go somewhere is because it DOES mask the symptoms and I feel like I then won't know whether things are actually really getting better or the Immodium is just making it seem that way. That's my dilemma. If it's going to take months for things to get back to "normal" I can't see not being able to do my regular activities that long b/c I can't leave the house. I have done a lot of volunteer work up until this MC thing started and not being able to go out and do it is making me very depressed, BUT I also want to know that all the food I'm giving up is actually helping so I can figure out what is okay and what isn't since I don't want to be taking Immodium forever. Maybe take the Immodium so I can do my activities and then go on an Immodium "fast" after a month's time and see where I'm at?
Thank you!
Kimber
Thank you all so much for your responses & encouragement. I have felt so alone in all of this b/c no one "gets" what this is like. I feel better just knowing that I have some understanding people to converse with as well as an abundance of good, reliable information.
Of course, I have another question!
My doctor suggested Pepto & Immodium to help w/symptoms before going the steroid route. I tried Pepto & it doesn't help, but Immodium does. While I am eating what I hope are healing foods while avoiding the irritating ones, should I take the Immodium so I can get out of the house more even though it will "mask" my symptoms? The reason I have only been taking it when I HAVE to go somewhere is because it DOES mask the symptoms and I feel like I then won't know whether things are actually really getting better or the Immodium is just making it seem that way. That's my dilemma. If it's going to take months for things to get back to "normal" I can't see not being able to do my regular activities that long b/c I can't leave the house. I have done a lot of volunteer work up until this MC thing started and not being able to go out and do it is making me very depressed, BUT I also want to know that all the food I'm giving up is actually helping so I can figure out what is okay and what isn't since I don't want to be taking Immodium forever. Maybe take the Immodium so I can do my activities and then go on an Immodium "fast" after a month's time and see where I'm at?
Thank you!
Kimber
Diagnosed July2014
-
Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Kimber,
Take the meds that help you, while you figure out an eating plan that works for you.
My advice for now, while energy levels are a bit reduced, focus on you, figure out your eating plan, get some good gut healing happening. As things improve, then restart the pre MC activities.
Reducing inflammation and gut healing takes time, diligence, etc. push the boundaries a bit too much and you can undo weeks (or months) of hard work.
By boundaries, with MC and the other issues you have, while inflammation is occurring you have a limited bank of energies, mental, physical and emotional. Overspend any or all of these and you pay the price with exacerbated symptoms.
Understandably, doing those activities is a good 'distraction' from our own issues, one thing I have learnt in the past few years, was how to put my needs first, guilt free. Right now, your body needs the time, energy and nurturing to heal.
Your emotional well being will improve greatly with inflammation minimised.
Vit D3 is a fantastic supp for Mc and the other symptoms, namely reducing inflammation.
Magnesium is fantastic for the fibro, and the gut.
Hope this helps
Take the meds that help you, while you figure out an eating plan that works for you.
My advice for now, while energy levels are a bit reduced, focus on you, figure out your eating plan, get some good gut healing happening. As things improve, then restart the pre MC activities.
Reducing inflammation and gut healing takes time, diligence, etc. push the boundaries a bit too much and you can undo weeks (or months) of hard work.
By boundaries, with MC and the other issues you have, while inflammation is occurring you have a limited bank of energies, mental, physical and emotional. Overspend any or all of these and you pay the price with exacerbated symptoms.
Understandably, doing those activities is a good 'distraction' from our own issues, one thing I have learnt in the past few years, was how to put my needs first, guilt free. Right now, your body needs the time, energy and nurturing to heal.
Your emotional well being will improve greatly with inflammation minimised.
Vit D3 is a fantastic supp for Mc and the other symptoms, namely reducing inflammation.
Magnesium is fantastic for the fibro, and the gut.
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
Kimber,
Your remark about feeling all alone is right on target. This can be a very lonely disease. The first and only time that I have ever felt all alone in the world was when I was as sick as a dog (as they say
) and my GI doc told me that there was nothing he could do for me.
Imodium is generally one of the safest medications that one can use to help control the diarrhea associated with this disease, because all it does is to slow down motility. It does nothing to address the inflammation, but it typically has no side effects either, except for constipation, if you use more than needed. It won't really mask your symptoms, unless diarrhea is the only symptom you have. Many members here have found it to be their key out of the house while they are still in recovery.
You have to read the label to make sure that the version you buy does not contain lactose (because many of them do), or some other ingredient that can cause some of us to react. If I recall correctly, the original version, Imodium AD, is free of lactose and any other ingredients known to be a common problem for someone who has MC.
You're very welcome,
Tex
Your remark about feeling all alone is right on target. This can be a very lonely disease. The first and only time that I have ever felt all alone in the world was when I was as sick as a dog (as they say
) and my GI doc told me that there was nothing he could do for me.Imodium is generally one of the safest medications that one can use to help control the diarrhea associated with this disease, because all it does is to slow down motility. It does nothing to address the inflammation, but it typically has no side effects either, except for constipation, if you use more than needed. It won't really mask your symptoms, unless diarrhea is the only symptom you have. Many members here have found it to be their key out of the house while they are still in recovery.
You have to read the label to make sure that the version you buy does not contain lactose (because many of them do), or some other ingredient that can cause some of us to react. If I recall correctly, the original version, Imodium AD, is free of lactose and any other ingredients known to be a common problem for someone who has MC.
You're very welcome,
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.
Welcome Kimber. You have gotten some great advice so far. We have all been where you are, and are here to tell you that if you do the detective work and diet changes now, then your life will improved later. How much later depends on how long you've been suffering and how fast you figure out the foods that cause you problems.
The top four foods that can bring on INFLAMMATION IS GLUTEN, DAIRY, SOY, AND EGGS in that order. Like Tex said, any RAW FRUITS AND VEGETABLES are very hard on the system while you still are inflamed, but i can tell you from experience, I have been able to add fresh veggies back in, small salads, and small amounts of fruit ( I still have issues with too much fructose). While you are healing, I's stay away from any food that MAY cause issues ( citrus, tomato products,beans and legumes, spicy foods,coffee, black tea, soda, artificial sweeteners….) and then , down the road, when you start to improve, you can test each food back in for three consecutive days before putting it on the OK list.
You being a vegetarian makes it much harder because most of us heal by eating a diet of mostly meats, cooked easy to digest veggies, and white rice. Maybe potatoes. But protein is one of the main foods that helps heal the gut. We are all slightly different inout "other" intolerances. Some of us can eat nuts, others can't. Some of us can eat potatoes, others can't. Sometimes it's even more narrow like I can eat white and black beans, but not lentils and split peas. … but I couldn't find that without first taking them all out.
If you can afford to, you could do the Enterolab tests and test what your main intolerances are. It saves time and guess work.
As for drugs, I took Entocort ( which stopped the D within days), but the diet is what enables us to get off whatever drug we may choose to take to help us through this healing phase. Just make sure that you can slowly wean off whatever you are taking so you can eventually tell what you are reacting to. We all need to live out lives. We so get that. I am a personal trainer. you can imagine how that was at the beginning of my DX!
Good luck and keep us posted on your progress
leah
The top four foods that can bring on INFLAMMATION IS GLUTEN, DAIRY, SOY, AND EGGS in that order. Like Tex said, any RAW FRUITS AND VEGETABLES are very hard on the system while you still are inflamed, but i can tell you from experience, I have been able to add fresh veggies back in, small salads, and small amounts of fruit ( I still have issues with too much fructose). While you are healing, I's stay away from any food that MAY cause issues ( citrus, tomato products,beans and legumes, spicy foods,coffee, black tea, soda, artificial sweeteners….) and then , down the road, when you start to improve, you can test each food back in for three consecutive days before putting it on the OK list.
You being a vegetarian makes it much harder because most of us heal by eating a diet of mostly meats, cooked easy to digest veggies, and white rice. Maybe potatoes. But protein is one of the main foods that helps heal the gut. We are all slightly different inout "other" intolerances. Some of us can eat nuts, others can't. Some of us can eat potatoes, others can't. Sometimes it's even more narrow like I can eat white and black beans, but not lentils and split peas. … but I couldn't find that without first taking them all out.
If you can afford to, you could do the Enterolab tests and test what your main intolerances are. It saves time and guess work.
As for drugs, I took Entocort ( which stopped the D within days), but the diet is what enables us to get off whatever drug we may choose to take to help us through this healing phase. Just make sure that you can slowly wean off whatever you are taking so you can eventually tell what you are reacting to. We all need to live out lives. We so get that. I am a personal trainer. you can imagine how that was at the beginning of my DX!
Good luck and keep us posted on your progress
leah
Hi...you sound just like I was a couple of months ago! Totally confused about which advice to follow...what to eat...what not to eat. It is a nightmare of conflicting information. Just when you decide that eating potatoes is the answer, someone will tell you that "nightshades are poison..." I got thin, malnourished and depressed...I felt a total failure because I was not able to control the situation by using the wisdom of books and knowledgeable people. I thought that I couldn't eat all sorts of things and eliminated them from my diet...after all, I reasoned, everyone else has these intolerances so I probably do too.
But, in the end, the symptoms just went away...and with them, the stress of beating myself up about my failure. I now eat everything but gluten...masses of fruit...cheese...nuts...veg. An attempt to de-crumb an old toaster for use with GF bread led to a temporary flare...and confirmation of my need to stay GF. I ditched the old toaster and have a lovely new one now!
I can only wish you the very best and encourage you to stay strong and not blame yourself if your plans don't succeed at first. For what it's worth...I eat a staple of potatoes and fish. I keep a diary and I take all advice with a big pinch of salt...a very big pinch! Instead, I try to listen to what my body is telling me. I feel sure that you will find something that works for you and that this bad period will not last too long.
All the best...Nick
But, in the end, the symptoms just went away...and with them, the stress of beating myself up about my failure. I now eat everything but gluten...masses of fruit...cheese...nuts...veg. An attempt to de-crumb an old toaster for use with GF bread led to a temporary flare...and confirmation of my need to stay GF. I ditched the old toaster and have a lovely new one now!
I can only wish you the very best and encourage you to stay strong and not blame yourself if your plans don't succeed at first. For what it's worth...I eat a staple of potatoes and fish. I keep a diary and I take all advice with a big pinch of salt...a very big pinch! Instead, I try to listen to what my body is telling me. I feel sure that you will find something that works for you and that this bad period will not last too long.
All the best...Nick
nick