I'm new here and have a feeling that this group will be exactly what I need! I've honestly felt very alone with this whole thing. I've suffered from D since my early teens. I've dealt with it for the most part as just part of my life. It was annoying. Until this past spring when everything took a turn for the worst. I was sick for about a week with D, going up to 14 times a day and extreme pain under my rib cage in the middle and a lot of swelling there in the top part of my stomach. And when it's bad my ribs will hurt to the touch. And the fatigue is unbearable. Hard to just lift my head up. And during a flare eating anything will make me extremely nauseous. And then theres the joint pain in my knees and ankles. I went to the Dr. and he sent me for a colonoscopy. It showed that I had L colitis. They put me on a steroid that I absolutely hated but the symptoms mostly went away. I also went on the FODMAP diet, but didn't see much improvement. I mostly went on with my life like normal because after the steroids things weren't too bad. I might get a flare here and there but they were very minor. I'd have D, feel sick, take a nap for an hour or two and things would be back to normal. I did get the stomach flu and that set off a flare that lasted several days. I'm only assuming that's to be expected?
So this last month my diet and exercise has been the best it's ever been. I've never felt better physically or emotionally. But then out of the blue Monday night, I felt that all too familure feeling of having to run to the bathroom, extreme fatigue, nausea, pain in my upper stomach, the feeling of my ribs being pushed out, and joint pain. It all is back with a vengeance. The only thing I can think of that might of set it off is after 6 months I've re-added apples back into my diet. I've been eating them everyday for a little more than a week. I ate my first one last week and no problems. Could the apples have a delayed reaction? I don't understand where this flare came from. I've been so sick the last 3 days. Even chicken broth upsets my stomach. I took amodium Tuesday and that seems to help with the D, but not any of the other symptoms.
I know so very little about this and am looking for a lot of answers. I don't really know where to start.
New and frustrated :(
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Start with the section for newbies. Use the search feature and ask questions. If you want a faster track, without plowing through this site, you may want to buy Tex's book. A link is in the upper right hand corner. (I wish it had been available when I joined.)
DISCLAIMER: I am not a doctor and don't play one on TV.
LDN July 18, 2014
Joan
LDN July 18, 2014
Joan
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humbird753
- Rockhopper Penguin
- Posts: 1014
- Joined: Mon Nov 28, 2011 4:44 pm
- Location: Wisconsin
Welcome joanisna4,
Sorry to hear how badly you've been feeling. In many ways it sounds like you've come to the right place. I am not one of the experts, but have been here for several years. Have you gone gluten-free? Most if not all of us are sensitive to gluten. I was diagnosed with L colitis in June of 2010, but didn't find my way here until the end of 2011. I have been gluten and dairy free for several years now, and have found a tremendous amount of improvement and healing. Each of us has different food sensitivities, but gluten appears to be the most common.
When my symptoms were in full force I experienced explosive D (at my worst) 25 to 30 times day. I fully understand the exhausted feeling you talk about. This last spring (2013) was the first time in 4 years that I was able to take a walk by myself. Mostly due to needing to be in the bathroom, but also because of the extreme fatigue and imbalance issues I was experiencing. I am now golfing again (initially with a riding cart in the event I needed to get away quickly), take long walks, am able to go into stores and dont' even wonder where the bathrooms are any longer.
Most here find that simplifying the diet helps get us started on our healing journey. I ate only whole foods. I didn't even eat the processed gluten-free foods out there. I ate meats, well cooked vegetables, potatoes or rice, hard boiled eggs, applesauce, rice cakes (plain) with nut butters (rather than nuts), bananas, sweet potatoes (which offer a lot of nutrients). Again, we are often different with which foods we are sensitive to. I also started making my own bone broth which offers so much for helping us heal more quickly. Foods like apples, raw fruits, raw vegetables, and whole nuts are often irritating on an already inflamed gut.
I don't know if you noticed, but on the upper right-hand corner of this site there's a book called, "Microscopic Colitis" which was written by Wayne Persky (known here as Tex). Tex is also the administrator of this site. The book has helped me understand so much more about L colitis than any of the doctors I saw. The reason I believe it is a very resourceful book is because it is written by and about others who experience MC.
If you are unsure about your food sensitivities there is also a lab in Texas called Enterolab that offers tests to determine your food sensitivities. Some utilize the lab testing, and some have found their food sensitivities by diet elimination.
Welcome, and please ask questions. I know many others will join in to welcome you, and will share what has helped them.
Paula
Sorry to hear how badly you've been feeling. In many ways it sounds like you've come to the right place. I am not one of the experts, but have been here for several years. Have you gone gluten-free? Most if not all of us are sensitive to gluten. I was diagnosed with L colitis in June of 2010, but didn't find my way here until the end of 2011. I have been gluten and dairy free for several years now, and have found a tremendous amount of improvement and healing. Each of us has different food sensitivities, but gluten appears to be the most common.
When my symptoms were in full force I experienced explosive D (at my worst) 25 to 30 times day. I fully understand the exhausted feeling you talk about. This last spring (2013) was the first time in 4 years that I was able to take a walk by myself. Mostly due to needing to be in the bathroom, but also because of the extreme fatigue and imbalance issues I was experiencing. I am now golfing again (initially with a riding cart in the event I needed to get away quickly), take long walks, am able to go into stores and dont' even wonder where the bathrooms are any longer.
Most here find that simplifying the diet helps get us started on our healing journey. I ate only whole foods. I didn't even eat the processed gluten-free foods out there. I ate meats, well cooked vegetables, potatoes or rice, hard boiled eggs, applesauce, rice cakes (plain) with nut butters (rather than nuts), bananas, sweet potatoes (which offer a lot of nutrients). Again, we are often different with which foods we are sensitive to. I also started making my own bone broth which offers so much for helping us heal more quickly. Foods like apples, raw fruits, raw vegetables, and whole nuts are often irritating on an already inflamed gut.
I don't know if you noticed, but on the upper right-hand corner of this site there's a book called, "Microscopic Colitis" which was written by Wayne Persky (known here as Tex). Tex is also the administrator of this site. The book has helped me understand so much more about L colitis than any of the doctors I saw. The reason I believe it is a very resourceful book is because it is written by and about others who experience MC.
If you are unsure about your food sensitivities there is also a lab in Texas called Enterolab that offers tests to determine your food sensitivities. Some utilize the lab testing, and some have found their food sensitivities by diet elimination.
Welcome, and please ask questions. I know many others will join in to welcome you, and will share what has helped them.
Paula
Paula
"You'll never know how strong you are until being strong is the only choice you have."
"Life is not about waiting for the storm to pass... It's learning to dance in the rain."
"You'll never know how strong you are until being strong is the only choice you have."
"Life is not about waiting for the storm to pass... It's learning to dance in the rain."
Hi Joan,
Welcome to our Internet family. Yes, you are quite correct that this is a very isolating and lonely disease, because it seems that no one truly understands it unless they actually have it. Here, everyone understands.
If you're already following a very restricted diet, it's possible that the fiber in the apples may have triggered a relapse of symptoms. We don't produce antibodies to fiber (the way we produce antibodies to gluten, casein, and certain other foods) but when our intestines are still hypersensitive, fiber can be very irritating because it is so abrasive. Therefore, we have to minimize fiber in our diet until we have experienced enough healing that we can begin to tolerate larger amounts of it again. With something like fiber, the damage could accumulate each day until it exceeded your tolerance threshold, and a reaction was triggered.
However, it's also possible that you might be reacting to something else in your diet. When you say that even chicken broth upsets your stomach, are you referring to commercial chicken broth, or homemade? Some of the commercial stuff contains ingredients that cause us to react. But more than that, a few members here cannot tolerate chicken, so that might be your problem. Most people here who cannot tolerate chicken can safely eat turkey, though, so that makes a good substitute.
Again, welcome aboard, and please feel free to ask anything.
Tex
Welcome to our Internet family. Yes, you are quite correct that this is a very isolating and lonely disease, because it seems that no one truly understands it unless they actually have it. Here, everyone understands.
If you're already following a very restricted diet, it's possible that the fiber in the apples may have triggered a relapse of symptoms. We don't produce antibodies to fiber (the way we produce antibodies to gluten, casein, and certain other foods) but when our intestines are still hypersensitive, fiber can be very irritating because it is so abrasive. Therefore, we have to minimize fiber in our diet until we have experienced enough healing that we can begin to tolerate larger amounts of it again. With something like fiber, the damage could accumulate each day until it exceeded your tolerance threshold, and a reaction was triggered.
However, it's also possible that you might be reacting to something else in your diet. When you say that even chicken broth upsets your stomach, are you referring to commercial chicken broth, or homemade? Some of the commercial stuff contains ingredients that cause us to react. But more than that, a few members here cannot tolerate chicken, so that might be your problem. Most people here who cannot tolerate chicken can safely eat turkey, though, so that makes a good substitute.
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.
Hi Joan, to add to what Tex said, some commercial chicken broths ( and other seemingly safe foods) contain yeast extract which is often wheat based. I've been tripped up by that before myself. I also react strongly to soy and soy based ingredients like tocopherols. If I eat soy I'm nauseated within a couple of hours.
You probably know this, but it will take 2 years for your gut to heal even after you've eliminated problem foods. Not only did I hear that here but my GI doc (one of the good ones) told me the same thing. The steroids will reduce the symptoms but only the diet changes heal. If you can afford it, I'd suggest you get the Enterolab tests done-- just knowing if you react to the big 4 (gluten, dairy, soy and eggs) can get you on the track to recovery. If Enterolab is not an option, then I'd suggest you eliminate all gluten and dairy for starters. If you still have symptoms then eliminate soy. Somewhere on this board we have a survey of how many of us react to gluten (it's high, like 95% of us), with dairy being the second highest. So if you can't get the tests you can still develop a plan for recovery based on the experiences of all here.
I was diagnosed with LC in August of 2011, but am now in remission (with the biopsies to prove it). You have to eliminate the foods you are reacting to and NEVER cheat or you will set yourself back tremendously. It took me every bit of 2 years to heal and a 3rd year of having some motility issues, before I was truly in remission. It was worth every bit of effort.
Carol
You probably know this, but it will take 2 years for your gut to heal even after you've eliminated problem foods. Not only did I hear that here but my GI doc (one of the good ones) told me the same thing. The steroids will reduce the symptoms but only the diet changes heal. If you can afford it, I'd suggest you get the Enterolab tests done-- just knowing if you react to the big 4 (gluten, dairy, soy and eggs) can get you on the track to recovery. If Enterolab is not an option, then I'd suggest you eliminate all gluten and dairy for starters. If you still have symptoms then eliminate soy. Somewhere on this board we have a survey of how many of us react to gluten (it's high, like 95% of us), with dairy being the second highest. So if you can't get the tests you can still develop a plan for recovery based on the experiences of all here.
I was diagnosed with LC in August of 2011, but am now in remission (with the biopsies to prove it). You have to eliminate the foods you are reacting to and NEVER cheat or you will set yourself back tremendously. It took me every bit of 2 years to heal and a 3rd year of having some motility issues, before I was truly in remission. It was worth every bit of effort.
Carol
“.... people will forget what you said, people will forget what you did, but people will never forget how you made them feel.” Maya Angelou
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Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
I agree with Tex, the fibre in the apples might be a bit much.
Is it home made bone broth, only chicken, no other ingredients??
as Joan suggested, read the posts/areas aimed at newbies, and subsequent discussions, this may answer quite a few of your questions...
good luck on your MC journey
Is it home made bone broth, only chicken, no other ingredients??
as Joan suggested, read the posts/areas aimed at newbies, and subsequent discussions, this may answer quite a few of your questions...
good luck on your MC journey
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama