I'm new and need help please
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
I'm new and need help please
I've had CC for over 2 yrs and just diagnosed in June 2009, Right now I'm on Entocort 3 mg 2x per day before the entocort iwas very miserable it has help but I am still having bad flare ups. I've had chronic diarrehea, fever,fatigue, horride stomach pains, Joint pain, and bad canker sores. But now I have a new side affect of this disease, and was wondering if any one else does it's pink eye I can hardly stand it. Can anyone give me a full lists of side affects I would really appreciate it. I would like any and all information on this disease.
Thank-You
Star
Thank-You
Star
See the message from Tex in this thread
DISCLAIMER: I am not a doctor and don't play one on TV.
LDN July 18, 2014
Joan
LDN July 18, 2014
Joan
WELCOME STAR!!
I'm sorry you had to find us, but you've come to the most comprehensive and helpful site for Microscopic Colitis. We're here to help you and we understand what you're going through.
I'm not a doctor, but my experience tells me that canker sores do accompany this disease for many of us. I don't think pink eye is a complication due to MC. You probably should see a doctor to get eye drops for the conjunctivitis.
There are many other symptoms that accompany MC. Bloating, stomach pain, painful joints, and fatigue are just some of them. My joint pain cleared up considerably once I began taking Entocort. My canker sores come and go, depending on what I've eaten that day. I'm sure others will be sharing their experiences shortly.
Gloria
I'm sorry you had to find us, but you've come to the most comprehensive and helpful site for Microscopic Colitis. We're here to help you and we understand what you're going through.
I'm not a doctor, but my experience tells me that canker sores do accompany this disease for many of us. I don't think pink eye is a complication due to MC. You probably should see a doctor to get eye drops for the conjunctivitis.
There are many other symptoms that accompany MC. Bloating, stomach pain, painful joints, and fatigue are just some of them. My joint pain cleared up considerably once I began taking Entocort. My canker sores come and go, depending on what I've eaten that day. I'm sure others will be sharing their experiences shortly.
Gloria
You never know what you can do until you have to do it.
You've come to the right place! People are so helpful sharing their stories and what works/doesn't work for them. I found this Forum about a month ago after I was diagnosed with LC, and have found lots of help. Everyone is different, but there are common themes. I'm doing great now that I've gone gluten-free and eliminated a bunch of herbal supplements. The D is gone, and so is the fatigue and other issues that I never had associated with LC. Poking around the forum using the search function is very helpful too.
Rosie
Rosie
Our greatest weakness lies in giving up. The most certain way to succeed is always to try just one more time………Thomas Edison
Hi Star,
Welcome to our internet family. MC can affect virtually virtually any part of the body, in one way or another. As Rosie mentioned, most of us are gluten-sensitive, and gluten can cross the blood/brain barrier to cause neurological issues, in addition to the typical GI issues that most of us are familiar with. As Gloria mentioned, mouth sores are very common with MC, (Like Crohn's disease, MC can affect any part of the GI tract, from mouth to anus). Pink eye, (and other eye issues), is not common with MC, but some members do have problems with it, so these issues are probably somehow connected with the disease.
The most common symptoms, (again, as Gloria mentioned), include abdominal pain, gas and bloating, and fatigue, but they can also include arthritic symptoms, headaches, migraines, nausea, vomiting, leg and/or foot cramps, restless leg syndrome, the symptoms of SLE, the symptoms of chronic fatigue syndrome, pancreatitis, and other symptoms that slip my mind at the moment.
For most of us, the key to remission of symptoms, is to track down the foods that we are intolerant of, and completely eliminate them from our diet, including avoiding all trace amounts. Most of us are intolerant of gluten, and dairy products, and about half of us are also intolerant of soy, and all it's derivatives.
Some people are lucky enough that Entocort will resolve their symptoms, but many of us also have to modify our diets, in order to attain remission. Most of us have been where you are now, so we understand what you are dealing with, and we'll try to help in any way we can. Please feel free to ask anything.
Tex (Wayne)
Welcome to our internet family. MC can affect virtually virtually any part of the body, in one way or another. As Rosie mentioned, most of us are gluten-sensitive, and gluten can cross the blood/brain barrier to cause neurological issues, in addition to the typical GI issues that most of us are familiar with. As Gloria mentioned, mouth sores are very common with MC, (Like Crohn's disease, MC can affect any part of the GI tract, from mouth to anus). Pink eye, (and other eye issues), is not common with MC, but some members do have problems with it, so these issues are probably somehow connected with the disease.
The most common symptoms, (again, as Gloria mentioned), include abdominal pain, gas and bloating, and fatigue, but they can also include arthritic symptoms, headaches, migraines, nausea, vomiting, leg and/or foot cramps, restless leg syndrome, the symptoms of SLE, the symptoms of chronic fatigue syndrome, pancreatitis, and other symptoms that slip my mind at the moment.
For most of us, the key to remission of symptoms, is to track down the foods that we are intolerant of, and completely eliminate them from our diet, including avoiding all trace amounts. Most of us are intolerant of gluten, and dairy products, and about half of us are also intolerant of soy, and all it's derivatives.
Some people are lucky enough that Entocort will resolve their symptoms, but many of us also have to modify our diets, in order to attain remission. Most of us have been where you are now, so we understand what you are dealing with, and we'll try to help in any way we can. Please feel free to ask anything.
Tex (Wayne)
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 Star,
Sorry to hear you have been struggling and didn't even get a diagosis for 2 years - that's not unusual.
As others have already mentioned, diet is very important with MC. Many of us had stool testing done through Enterolab to help determine our main intolerances (gluten, dairy, soy, egg), and then through trial and error, figured out the rest. Healing of a damaged gut takes time, but with changes in diet you should start to get some relief. I know it's probably not what what you want to hear, and probably not what you heard from your doctor, but it is very important to address dietary issues. I encourage you to dig around the website and look at newbie info and old threads - you will get plenty of useful tips.
Again, welcome.
Mary Beth
Sorry to hear you have been struggling and didn't even get a diagosis for 2 years - that's not unusual.
As others have already mentioned, diet is very important with MC. Many of us had stool testing done through Enterolab to help determine our main intolerances (gluten, dairy, soy, egg), and then through trial and error, figured out the rest. Healing of a damaged gut takes time, but with changes in diet you should start to get some relief. I know it's probably not what what you want to hear, and probably not what you heard from your doctor, but it is very important to address dietary issues. I encourage you to dig around the website and look at newbie info and old threads - you will get plenty of useful tips.
Again, welcome.
Mary Beth
Hi Star
I agree with Rosie that using the search function is very useful. That is "search" in between "rules" and "members list" above "Google Search" (not the Google Search itself).
Hope the nasty symptoms start to get better soon. As others have said many of these are common for MC, but as you heal they should improve. I am currently on Entocort 3 mg 3x per day and also need GF, DF and SF diet to keep the dreaded D away. If you have just started on Entocort I am surprised you are on 2x rather the 3x per day.
Best wishes, Ant
I agree with Rosie that using the search function is very useful. That is "search" in between "rules" and "members list" above "Google Search" (not the Google Search itself).
Hope the nasty symptoms start to get better soon. As others have said many of these are common for MC, but as you heal they should improve. I am currently on Entocort 3 mg 3x per day and also need GF, DF and SF diet to keep the dreaded D away. If you have just started on Entocort I am surprised you are on 2x rather the 3x per day.
Best wishes, Ant
- MaggieRedwings
- King Penguin
- Posts: 3865
- Joined: Tue May 31, 2005 3:16 am
- Location: SE Pennsylvania
Welcome Star!
Sorry for the reason you found us but you have landed on the most informational site on the internet for this disease. Yes, canker sores seem to be a side effect for a number of our members. Sit down, grab a cup of Joe as Barbara would say, and really dig into the site. There is a wealth of information here.
Maggie
Sorry for the reason you found us but you have landed on the most informational site on the internet for this disease. Yes, canker sores seem to be a side effect for a number of our members. Sit down, grab a cup of Joe as Barbara would say, and really dig into the site. There is a wealth of information here.
Maggie
Maggie Scarpone
___________________
Resident Birder - I live to bird and enjoy life!
___________________
Resident Birder - I live to bird and enjoy life!
-
- Adélie Penguin
- Posts: 106
- Joined: Sun Jul 05, 2009 2:17 pm
I've been plagued with canker sores and geographical tongue for years. Being gluten free helps tremendously along with no acidic fruits (especially pineapple) or citric acid (not related to fruit). I will still get a flair occasionally but less and less as I watch my diet. Welcome to the forum, you will find tons of information and the most friendly people ever!
Kathy
Star,
Please don't hesitate to post, anytime you have a question, or a comment, or you just need to vent, or whatever.
You're most welcome, and thank you for the kind words.
Tex
Please don't hesitate to post, anytime you have a question, or a comment, or you just need to vent, or whatever.
You're most welcome, and thank you for the kind words.
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.