Newbie (sort of)
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Newbie (sort of)
Hello everyone, I have been an on again, off again lurker/info seeker on this discussion board as well as the internet in general. I have been suffering with CC since 2005. Was diagnosed after a year of horrible diarrhea with doctor after doctor unable to figure out why. Long story short, my CC began while married to a very abusive man. Fast forward 8 years later my life is in a much better place, great job, good people around me. My CC has flared off and on with I can really only recall 3 BAD flares. The first really bad flare I was flat on my back for a month, I had let it progress to the point where I could no longer hold down food or water and was in the ER on three separate occasions for IV fluids and potassium. I currently am in a flare of the same magnitude, however the job I am in right now I could not possibly imagine having to be out for a month. I feel myself slipping down that same path of inappetance and my energy level is nil. Luckily I don't have to be back at work until Wednesday ( I am a veterinary technician, my job can be very physical, on the floor with unruly dogs, etc) and I am desperately trying to keep myself out of the ER. I have up to 20-30 BM of the liquid variety per day, while working I seem to be able to manage my shift with minimal trips to the loo, I think it is because I minimize my intake of food while working. I am a huge water drinker, but have managed to drink a half a large bottle of gatorade yesterday. I have awful food aversions and would like to know if any other people have those as well? Yesterday I craved american cheese, so had a bunch of that with some crackers throughout the day. I have not been to a GI specialist since 2005 due to insurance and financial issues. I do have an appointment next week with my NP and will ask for a referral to a new GI doc who will most likely want to do a colonoscopy. Do any of you have any suggestions for battling the horrible, mind numbing fatigue? I was literally crying yesterday it was so bad, and while I was crying I kept thinking, I am not dehydrated..I still have tears!! OY!! Many thanks, Sandra..
Imperfection is beauty, madness is genius. It's better to be absolutely ridiculous than to be absolutely boring :D
Hi Sandra,
I am fairly new here too. What I know is that most of us need to be gluten free and dairy free. The cheese and crackers could be making things worse. While I am trying to heal I eat mostly chicken and rice and green beans. Perhaps that would help, while you are waiting to see the doctor.
I hope you feel better soon.
Warmly,
Lori
I am fairly new here too. What I know is that most of us need to be gluten free and dairy free. The cheese and crackers could be making things worse. While I am trying to heal I eat mostly chicken and rice and green beans. Perhaps that would help, while you are waiting to see the doctor.
I hope you feel better soon.
Warmly,
Lori
Hi Sandra,
I'm sorry to hear that you're having such serious symptoms. I wish I could tell you about an easy way to stop the symptoms, so that you can get on with your life, but unfortunately there is no easy way. CC is a serious disease, and controlling it takes serious effort and dedication. Many of us here have been in remission for 8 or 10 years, but in order to do that we had to make drastic diet changes, and we have to continue to carefully control our diet every time we put any food, supplements, or medications into our mouth. IOW, controlling this disease is a lifelong project.
If you can persuade your doctor to write a prescription for Entocort, you may be able to gain control of your symptoms for a while, but Entocort is very expensive, so whether or not it is affordable would depend on your insurance. Unfortunately though, Entocort doesn't control the symptoms for everyone — most of us have to change our diet also, in order for Entocort to relieve the symptoms. And without the necessary diet changes, as soon as you stop taking Entocort, your symptoms will relapse.
Lori is correct. In the long run, the only way to stop MC from destroying our ability to function, is to stop the generation of inflammation that causes it. And the only way to stop that inflammation from being produced, is to eliminate from our diet, all of the foods that cause us to produce antibodies. Primarily, they are gluten, dairy, and soy, but many of us have other food sensitivities, also. If we totally avoid them 100 % of the time, we can get our life back. If we don't constantly do our part to prevent the disease from flaring, then we are vulnerable to a flare at any time. It's that simple.
Good luck with this. I hope that you will be able to do what you need to do to get your life back. We are here for you at every step of the way, whenever you need support or information. But we can't do it for you. Only you can control CC, because your doctor doesn't know how to control it. He or she can prescribe drugs, but drugs can only mask the symptoms. They can't prevent the inflammation from being generated in the first place — only diet changes can do that. And if your GI doc is typical, she or he will probably tell you that diet has nothing to do with CC. Unfortunately, that opinion is dead wrong, and it's the primary reason why doctors have such a poor record at treating this disease.
Tex
I'm sorry to hear that you're having such serious symptoms. I wish I could tell you about an easy way to stop the symptoms, so that you can get on with your life, but unfortunately there is no easy way. CC is a serious disease, and controlling it takes serious effort and dedication. Many of us here have been in remission for 8 or 10 years, but in order to do that we had to make drastic diet changes, and we have to continue to carefully control our diet every time we put any food, supplements, or medications into our mouth. IOW, controlling this disease is a lifelong project.
If you can persuade your doctor to write a prescription for Entocort, you may be able to gain control of your symptoms for a while, but Entocort is very expensive, so whether or not it is affordable would depend on your insurance. Unfortunately though, Entocort doesn't control the symptoms for everyone — most of us have to change our diet also, in order for Entocort to relieve the symptoms. And without the necessary diet changes, as soon as you stop taking Entocort, your symptoms will relapse.
Lori is correct. In the long run, the only way to stop MC from destroying our ability to function, is to stop the generation of inflammation that causes it. And the only way to stop that inflammation from being produced, is to eliminate from our diet, all of the foods that cause us to produce antibodies. Primarily, they are gluten, dairy, and soy, but many of us have other food sensitivities, also. If we totally avoid them 100 % of the time, we can get our life back. If we don't constantly do our part to prevent the disease from flaring, then we are vulnerable to a flare at any time. It's that simple.
Good luck with this. I hope that you will be able to do what you need to do to get your life back. We are here for you at every step of the way, whenever you need support or information. But we can't do it for you. Only you can control CC, because your doctor doesn't know how to control it. He or she can prescribe drugs, but drugs can only mask the symptoms. They can't prevent the inflammation from being generated in the first place — only diet changes can do that. And if your GI doc is typical, she or he will probably tell you that diet has nothing to do with CC. Unfortunately, that opinion is dead wrong, and it's the primary reason why doctors have such a poor record at treating this disease.
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.
Thank you both so much for your responses. I am going to bite the bullet (no pun intended) and start to wean off of gluten, every time I try to do so I get so overwhelmed I end up throwing in the towel. If you guys have ANY suggestions for how to begin I would be eternally grateful. I have had this awful disease for 8 years but feel like such a novice. I don't want to have to be dependent on drugs for the CC but will if I have to. Money is a huge issue for me at this time, I barely live paycheck to paycheck. So inexpensive ideas would be so appreciated. So I am guessing saltine crackers are a no-no? How about cream of rice cereal? I know rice chex now say gluten free. I will check out the GF page here for a beginner like myself. I do feel a bit more human after a 1/2 gallon of gatorade over the past two days. Hopefully I will be back on track for the most part to get to work tomorrow. Thank you both again so much, this forum is simply wonderful :D
Sandra
Sandra
Imperfection is beauty, madness is genius. It's better to be absolutely ridiculous than to be absolutely boring :D
Re: Newbie (sort of)
tooolgrl wrote:Hello everyone, I have been an on again, off again lurker/info seeker on this discussion board as well as the internet in general. I have been suffering with CC since 2005. Was diagnosed after a year of horrible diarrhea with doctor after doctor unable to figure out why. Long story short, my CC began while married to a very abusive man. Fast forward 8 years later my life is in a much better place, great job, good people around me. My CC has flared off and on with I can really only recall 3 BAD flares. The first really bad flare I was flat on my back for a month, I had let it progress to the point where I could no longer hold down food or water and was in the ER on three separate occasions for IV fluids and potassium. I currently am in a flare of the same magnitude, however the job I am in right now I could not possibly imagine having to be out for a month. I feel myself slipping down that same path of inappetance and my energy level is nil. Luckily I don't have to be back at work until Wednesday ( I am a veterinary technician, my job can be very physical, on the floor with unruly dogs, etc) and I am desperately trying to keep myself out of the ER. I have up to 20-30 BM of the liquid variety per day, while working I seem to be able to manage my shift with minimal trips to the loo, I think it is because I minimize my intake of food while working. I am a huge water drinker, but have managed to drink a half a large bottle of gatorade yesterday. I have awful food aversions and would like to know if any other people have those as well? Yesterday I craved american cheese, so had a bunch of that with some crackers throughout the day. I have not been to a GI specialist since 2005 due to insurance and financial issues. I do have an appointment next week with my NP and will ask for a referral to a new GI doc who will most likely want to do a colonoscopy. Do any of you have any suggestions for battling the horrible, mind numbing fatigue? I was literally crying yesterday it was so bad, and while I was crying I kept thinking, I am not dehydrated..I still have tears!! OY!! Many thanks, Sandra..
Hi Sandra,
A fellow Mainer here. I'd love to hear who you get referred to for a GI. I'm so sorry you're suffering. We've all been there and fatigue is a big part of this disease. Entocort gave me back my life while I figured out and eliminated all of my food intolerances (they include gluten, dairy, soy, no chicken or beef, peanuts, garlic, as well as several others.) I also had MRT testing done and that helped me make sure I was heading in the right direction. Alot of folks here have had testing through Entorlab as well and I would recommend either. What I can tell you is that there is hope and I have been off all medications for many months and currently have 1 norman daily (after having 15-20 bouts of WD daily) and the fatigue is gone! I am feeling so much better. Good luck to you!
Sandra,
You're right — making such drastic life-style changes requires serious self-discipline, and it's never easy. Here are my thoughts on that issue:
In order to convince ourselves to adopt changes that we tend to deem to be undesirable, we have to change our way of thinking. We have to become motivated, and we cannot become motivated unless we want to become motivated. Back when I made the decision to change my diet, I was extremely sick, so I looked at my choices this way:
1. I could do nothing and continue to live in misery for the rest of my life, never being able to truly enjoy life again, as I watched my health continue to slowly deteriorate, until the day would eventually arrive when my resistance had become so low that some opportunistic disease or infection would do me in.
2. I could try to do something to turn my life around. If I failed, and the diet changes didn't work, then I would be no worse off than I already was. But if I were successful, then I could have my life back.
To me, it was a no-brainer, and I dropped gluten like a hot potato and began keeping a detailed diary of what I ate and how I felt, as I tested other foods, by trial and error. Back in those days, I was unaware of EnteroLab, and my doctors didn't have a clue, so I was on my own. But it paid off, and I got my life back.
Another way to look at this is to recognize that for us, gluten is toxic. It truly is. It has major toxic effects on many organs in the body, similar to other types of poison.
Small amounts of arsenic in the diet tend to cause small problems, and as long as we don't overdo it, we can sort of tolerate it. But the effect is cumulative, so that as the amount continues to accumulate, at some point it will become toxic, and kill us. Knowing that, we wouldn't intentionally include arsenic in our diet. We would view choosing to ingest arsenic as a stupid choice — intentional suicide.
But if we also know that gluten is toxic to our body, then how can we continue to think of it as food? Logically, we can't, because it is no longer food for our body. It no longer nourishes us; instead, it's now toxic to our health. Now that we can clearly see that gluten is the enemy that has taken over our health (and therefore our life), it becomes much easier to view it as something that we never want to put into our mouth again. IOW, recognizing gluten (and the other foods that cause us to react) as toxic (not as food), provides a strong motivation to avoid them at all times.
At least that's how I see it.
Tex
You're right — making such drastic life-style changes requires serious self-discipline, and it's never easy. Here are my thoughts on that issue:
In order to convince ourselves to adopt changes that we tend to deem to be undesirable, we have to change our way of thinking. We have to become motivated, and we cannot become motivated unless we want to become motivated. Back when I made the decision to change my diet, I was extremely sick, so I looked at my choices this way:
1. I could do nothing and continue to live in misery for the rest of my life, never being able to truly enjoy life again, as I watched my health continue to slowly deteriorate, until the day would eventually arrive when my resistance had become so low that some opportunistic disease or infection would do me in.
2. I could try to do something to turn my life around. If I failed, and the diet changes didn't work, then I would be no worse off than I already was. But if I were successful, then I could have my life back.
To me, it was a no-brainer, and I dropped gluten like a hot potato and began keeping a detailed diary of what I ate and how I felt, as I tested other foods, by trial and error. Back in those days, I was unaware of EnteroLab, and my doctors didn't have a clue, so I was on my own. But it paid off, and I got my life back.
Another way to look at this is to recognize that for us, gluten is toxic. It truly is. It has major toxic effects on many organs in the body, similar to other types of poison.
Small amounts of arsenic in the diet tend to cause small problems, and as long as we don't overdo it, we can sort of tolerate it. But the effect is cumulative, so that as the amount continues to accumulate, at some point it will become toxic, and kill us. Knowing that, we wouldn't intentionally include arsenic in our diet. We would view choosing to ingest arsenic as a stupid choice — intentional suicide.
But if we also know that gluten is toxic to our body, then how can we continue to think of it as food? Logically, we can't, because it is no longer food for our body. It no longer nourishes us; instead, it's now toxic to our health. Now that we can clearly see that gluten is the enemy that has taken over our health (and therefore our life), it becomes much easier to view it as something that we never want to put into our mouth again. IOW, recognizing gluten (and the other foods that cause us to react) as toxic (not as food), provides a strong motivation to avoid them at all times.
At least that's how I see it.
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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I have to chime in, too.....I have food sensitivities to almost everything in our diet (I did Enterolab & MRT testing), and it's still a struggle, but I am making headway, just in baby steps.
I had the D for 9 months before I did the Enterolab tests and realized that chicken and rice were my worst intolerances, and I was eating them daily, thinking they should be calming down my gut. I gave up gluten almost two years ago due to intestinal distress.
Keep a journal of the foods you eat and any reactions that you have that day. You'll begin to see a pattern emerge. But, first get rid of gluten, soy, dairy, & eggs to start. I have not eaten in a restaurant for a year now, and while I feel jealous of those that can go out for lunch or dinner, I am happy for the confidence to leave my home without planning where the bathrooms are before hand....heck, I am happy to leave my home at all, because I didn't do that for a long time! The fatigue and brain fog will slowly diminish, too.
But, as Tex said...it is all about the foods we consume. Our bodies recognize them as invaders and build antibodies to them and cause us much distress.
You have to get the food sensitivities under control, and you can get your life back!
Have you read Tex's book yet, Microscopic Colitis? It is a wealth of information from a guy who has dedicated his life to helping others with this miserable disease.
Good luck, and ask anything....we are here for information and support!
I had the D for 9 months before I did the Enterolab tests and realized that chicken and rice were my worst intolerances, and I was eating them daily, thinking they should be calming down my gut. I gave up gluten almost two years ago due to intestinal distress.
Keep a journal of the foods you eat and any reactions that you have that day. You'll begin to see a pattern emerge. But, first get rid of gluten, soy, dairy, & eggs to start. I have not eaten in a restaurant for a year now, and while I feel jealous of those that can go out for lunch or dinner, I am happy for the confidence to leave my home without planning where the bathrooms are before hand....heck, I am happy to leave my home at all, because I didn't do that for a long time! The fatigue and brain fog will slowly diminish, too.
But, as Tex said...it is all about the foods we consume. Our bodies recognize them as invaders and build antibodies to them and cause us much distress.
You have to get the food sensitivities under control, and you can get your life back!
Have you read Tex's book yet, Microscopic Colitis? It is a wealth of information from a guy who has dedicated his life to helping others with this miserable disease.
Good luck, and ask anything....we are here for information and support!
Linda :)
LC Oct. 2012
MTHFR gene mutation and many more....
LC Oct. 2012
MTHFR gene mutation and many more....
Thank you all so much for the kind replies. I would be very interested in reading Tex's book, where do I get it? What I don't understand is no matter what I eat, or don't eat, the diarrhea never abates until the flare ends. I have absolutely no appetite whatsoever, and the thought of food literally gags me. I had an appointment to go see my nurse practitioner on Tuesday, however she had to reschedule so that is going to put my treatment off further. I used to go to a GI practice in Portland, I don't know who I will get referred to or who is in my network as our insurance just got changed over to Harvard Pilgrim. Does anyone here also get that horrible body pain when they flare up? I get intense rib pain that I only have when my CC is flaring. Anyway, I am on day 2 of Imodium treatment and seriously hoping it gets me some relief. The other day at work I was literally in the bathroom every 10 minutes. Thank you all again, today I am taking a "me" day and going to chill and do nothing in preparation for work tomorrow.
Sandra
Sandra
Imperfection is beauty, madness is genius. It's better to be absolutely ridiculous than to be absolutely boring :D
Sandra,
If you look in the upper right hand corner of this page you will find a link to Tex's book. It can be ordered through Amazon.
I hope the Immodium helps things for you but it is not a cure. The only "cure" come from making the dietary changes that are suggested here. They are eliminating gluten, dairy, soy and eggs. Just about everyone here has had to eliminate gluten. Most people have to eliminate diary as well and soy is pretty common. Eggs can cause problems too but a little less frequently. It is possible to be sensitive to a host of other foods as well. Fiber tends to be a major irritant along with fruit. Any vegetable needs to be well-cooked. The good news is that you don't have to wait to see a doctor to make these changes. In fact if you think your solution will come from a GI doctor you will probably be disappointed. They tend to not believe that diet has anything to do with it. Some people here get a prescription for Entocort from their doctor to take while they are instituting the dietary changes.
This is what has worked for me. In fact by the time I found this forum I had given up on thinking a doctor would have the solution. I found the solution in the dietary changes recommended here. I did Enterolab testing to confirm the food sensitivities but others here have had the same good results by using a very strict elimination diet. The safest thing to do is to stick to single ingrediet foods. Processed foods with long ingredient lists tend to have a lot of additives containing the foods you are trying to avoid. Even a little bit of the wrong food can cause havoc.
The good news is that this is doable but it takes hard work and discipline, a long term commitment to the plan too. I figure its for life.
I hope things get better for you.
Jean
If you look in the upper right hand corner of this page you will find a link to Tex's book. It can be ordered through Amazon.
I hope the Immodium helps things for you but it is not a cure. The only "cure" come from making the dietary changes that are suggested here. They are eliminating gluten, dairy, soy and eggs. Just about everyone here has had to eliminate gluten. Most people have to eliminate diary as well and soy is pretty common. Eggs can cause problems too but a little less frequently. It is possible to be sensitive to a host of other foods as well. Fiber tends to be a major irritant along with fruit. Any vegetable needs to be well-cooked. The good news is that you don't have to wait to see a doctor to make these changes. In fact if you think your solution will come from a GI doctor you will probably be disappointed. They tend to not believe that diet has anything to do with it. Some people here get a prescription for Entocort from their doctor to take while they are instituting the dietary changes.
This is what has worked for me. In fact by the time I found this forum I had given up on thinking a doctor would have the solution. I found the solution in the dietary changes recommended here. I did Enterolab testing to confirm the food sensitivities but others here have had the same good results by using a very strict elimination diet. The safest thing to do is to stick to single ingrediet foods. Processed foods with long ingredient lists tend to have a lot of additives containing the foods you are trying to avoid. Even a little bit of the wrong food can cause havoc.
The good news is that this is doable but it takes hard work and discipline, a long term commitment to the plan too. I figure its for life.
I hope things get better for you.
Jean