Hi everyone- I was recent diagnosed with collagenous colitis. I was having D up to 20 times/day. Things seem to be settling down in that department on their own, thankfully. My doctor prescribed cholestipol for the symptoms, but I haven't even used it yet. I still get cramping, even without the D. Is this normal? I suffered with constipation for years, prior to the CC. About 4-6 months ago, I noticed a change in my bowel habits. My primary care doctor told me it was anxiety. Yeah, right. I called my gastro and had a colonoscopy done. Anyway, I am still so incredibly exhausted, and my joints hurt, even though the D has not been as severe. Is this normal? Do you have bodily symptoms even when in remission? I have not tried going gluten free yet.
Thanks!
Tonia
newly diagnosed
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi Tonia,
Welcome aboard. Spontaneous remissions are possible, of course, (as with any IBD), but true remission requires that all symptoms must resolve, not just the D. The cramps, exhaustion, and the aches and pains, including the arthritis-like symptoms, (and probably the C, as well), are all symptoms of CC I also had C for most of my life, before the other symptoms presented. After all the other symptoms became severe, I usually alternated between D and C, until I was finally able to fine tune my diet, and my gut was able to heal.
Again, welcome, and please feel free to ask anything.
Tex (Wayne)
Welcome aboard. Spontaneous remissions are possible, of course, (as with any IBD), but true remission requires that all symptoms must resolve, not just the D. The cramps, exhaustion, and the aches and pains, including the arthritis-like symptoms, (and probably the C, as well), are all symptoms of CC I also had C for most of my life, before the other symptoms presented. After all the other symptoms became severe, I usually alternated between D and C, until I was finally able to fine tune my diet, and my gut was able to heal.
Again, welcome, and 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.
Tonia,
Yep, sounds like the rest of us. www.enterolab.com is a good place to start. Healing for some is pretty quick but for some of us it takes awhile. Some use meds to get by while they fine tune diet, some use diet alone, some use meds only. We're all different. Be patient. 2 points for trusting your instincts!
Pat
Yep, sounds like the rest of us. www.enterolab.com is a good place to start. Healing for some is pretty quick but for some of us it takes awhile. Some use meds to get by while they fine tune diet, some use diet alone, some use meds only. We're all different. Be patient. 2 points for trusting your instincts!
Pat
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Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
WElcome to the group
Alot of us have had the joint aches and the fatigue and lethargy that feels like you have the flu or something....
I too had D & C for many years that was classed as IBS.
For me, once i eliminated the foods/ingredients that were trigging the MC, the joint aches and the fatigue went away.
you feel like a new person once those symptoms go away! (for me i am gluten, dairy, yeast and soy free)
there is no shortcut or easy way with MC, each of us are slightly different with what foods trigger symptoms and even the type of symptoms that present, so my saying is "there is no right way or wrong way there is your way"
there is loads of info on this site and a great bunch of people willing to answer questions and help
Good luck 'digesting' all the info
take care
Alot of us have had the joint aches and the fatigue and lethargy that feels like you have the flu or something....
I too had D & C for many years that was classed as IBS.
For me, once i eliminated the foods/ingredients that were trigging the MC, the joint aches and the fatigue went away.
you feel like a new person once those symptoms go away! (for me i am gluten, dairy, yeast and soy free)
there is no shortcut or easy way with MC, each of us are slightly different with what foods trigger symptoms and even the type of symptoms that present, so my saying is "there is no right way or wrong way there is your way"
there is loads of info on this site and a great bunch of people willing to answer questions and help
Good luck 'digesting' all the info
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
Welcome Tonia!!
Stick around here and you will be guided to a less anxious life. Best wishes on your journey to remission, ant
who would not be 'anxious' with the reality we have to deal with.My primary care doctor told me it was anxiety
Stick around here and you will be guided to a less anxious life. Best wishes on your journey to remission, ant
----------------------------------------
"Softly, softly catchee monkey".....
"Softly, softly catchee monkey".....
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colorunner
- Posts: 8
- Joined: Mon Apr 25, 2011 5:05 pm
- Location: Colorado
Thank you all for your replies. I have been checking out the website for testing. I am willing to do whatever I need diet wise to get better. Does this disease ever completely go away, or does it just go into remission? I have always been a distance runner, and some days I feel like I can barely get out of bed. My primary care doc originally thought I had rheumatoid arthritis or MS or some other autoimmune disease. None of the initial tests she ran came back positive, but I am seeing a rheumatologist in June anyway.
Tonia,
I believe there is no *absolute* answer to your question (does it go away, or just into remission). For someone whose MC is caused by a specific medication, discontinuing the trigger might make it truly "go away" - as long as there aren't also other factors that make this possibility unlikely (genes for gluten sensitivity, for example).
I thought my MC had gone away (was unaware of the diet connection) and had an unusually long spell of luck, but it's back. And now I'm older, so I'm guessing - my health luck is not overall magically better ;) It's possible that the health you have built as an athlete will help you recover - though there is stress as well to hard training.
I am very happy for you that you don't have positive tests for MS or RA. I hope it stays that way! For sure, gluten is associated with those and many other autoimmune conditions. That sounds like terrible news, but actually it means that if you eliminate whatever your off-limits foods are, you may be able to nip a whole body of potential issues in the bud. Many here have had non-digestive symptoms, including neurological symptoms and joint pain, and figuring out the diet has helped.
It does seem to take time to figure it out, but I truly believe that your willingness to do what it takes will get you to health, whatever your specific path may be. And this is the place to help find that path.
Welcome. I hope you're feeling better already,
Sara
I believe there is no *absolute* answer to your question (does it go away, or just into remission). For someone whose MC is caused by a specific medication, discontinuing the trigger might make it truly "go away" - as long as there aren't also other factors that make this possibility unlikely (genes for gluten sensitivity, for example).
I thought my MC had gone away (was unaware of the diet connection) and had an unusually long spell of luck, but it's back. And now I'm older, so I'm guessing - my health luck is not overall magically better ;) It's possible that the health you have built as an athlete will help you recover - though there is stress as well to hard training.
I am very happy for you that you don't have positive tests for MS or RA. I hope it stays that way! For sure, gluten is associated with those and many other autoimmune conditions. That sounds like terrible news, but actually it means that if you eliminate whatever your off-limits foods are, you may be able to nip a whole body of potential issues in the bud. Many here have had non-digestive symptoms, including neurological symptoms and joint pain, and figuring out the diet has helped.
It does seem to take time to figure it out, but I truly believe that your willingness to do what it takes will get you to health, whatever your specific path may be. And this is the place to help find that path.
Welcome. I hope you're feeling better already,
Sara
Tonia,
One of our founding members was/is a runner, and after fine-tuning her diet, and discovering that the chocolate that she was eating every day contained soy lecithin, (even though it was not on the label), she quickly recovered, and went on to run marathons, which, I assume, she is still doing. We have had a couple of other members since then, who were dedicated runners. One found it necessary to take Entocort EC, in order to participate in a half-marathon, early on, but now she's running full marathons.
Once the genes are triggered, MC is a lifelong condition, but it can certainly be controlled, and careful diet management is usually sufficient. As Sara mentioned, for cases that are drug-induced, simply avoiding that drug, (or family of drugs), is sometimes sufficient to maintain remission.
Incidentally, in case you're not able to resolve your issues satisfactorily, FYI, arguably the GI specialist best qualified, (possibly world-wide), for treating MC, practices in Colorado, and he only accepts patients who are residents of that state. A couple of other members here have selected him as their GI doc, and they were quite happy with his handling of their treatment. He is known for his blogs, on the internet, as the "Food Doc". His name is Dr. Scot Lewey, and I believe he practices in Colorado Springs.
Tex
One of our founding members was/is a runner, and after fine-tuning her diet, and discovering that the chocolate that she was eating every day contained soy lecithin, (even though it was not on the label), she quickly recovered, and went on to run marathons, which, I assume, she is still doing. We have had a couple of other members since then, who were dedicated runners. One found it necessary to take Entocort EC, in order to participate in a half-marathon, early on, but now she's running full marathons.
Once the genes are triggered, MC is a lifelong condition, but it can certainly be controlled, and careful diet management is usually sufficient. As Sara mentioned, for cases that are drug-induced, simply avoiding that drug, (or family of drugs), is sometimes sufficient to maintain remission.
Incidentally, in case you're not able to resolve your issues satisfactorily, FYI, arguably the GI specialist best qualified, (possibly world-wide), for treating MC, practices in Colorado, and he only accepts patients who are residents of that state. A couple of other members here have selected him as their GI doc, and they were quite happy with his handling of their treatment. He is known for his blogs, on the internet, as the "Food Doc". His name is Dr. Scot Lewey, and I believe he practices in Colorado Springs.
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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colorunner
- Posts: 8
- Joined: Mon Apr 25, 2011 5:05 pm
- Location: Colorado
I can't believe this...Dr. Lewey is a doctor in the gastro practice that I go to! I have seen two other docs and a nurse practitioner in the practice, but not him. Actually, the NP that I saw was the one who suspected I had CC.
I am hoping to avoid entocort, if possible, but would take it if my symptoms worsened again. I am hoping to be able to adjust my diet and have that make a difference.
Thanks again to everyone for the welcomes and the assistance. I am sure I will have more questions!
I am hoping to avoid entocort, if possible, but would take it if my symptoms worsened again. I am hoping to be able to adjust my diet and have that make a difference.
Thanks again to everyone for the welcomes and the assistance. I am sure I will have more questions!
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Joefnh
- Rockhopper Penguin
- Posts: 2478
- Joined: Wed Apr 21, 2010 8:25 pm
- Location: Southern New Hampshire
Hi colorunner and welcome to the group. As has been said diet is the first line of treatment and for many it is enough tip bring the symptoms into remission. Like you I have the joint pain and fatigue, especially if I eat something I shouldn't like wheat Or soy products. MC really is far more than just a GI disease as it can and does affect other parts of the body.
Certainty getting some food intolerance testing done and working with the diet will get you relief the soonest. With MC these changes tend to be measured in weeks not hours or days. For gluten it can take a good month for the antibodies to dissipate. Many people get tripped up here by going gluten free for a week or 2 then stopping the diet prematurely before it has had a chance top be beneficial.
That's great you have such a world renowned doctor right In your area
Joe
Certainty getting some food intolerance testing done and working with the diet will get you relief the soonest. With MC these changes tend to be measured in weeks not hours or days. For gluten it can take a good month for the antibodies to dissipate. Many people get tripped up here by going gluten free for a week or 2 then stopping the diet prematurely before it has had a chance top be beneficial.
That's great you have such a world renowned doctor right In your area
Joe
Joe