Feel free to discuss any topic of general interest, so long as nothing you post here is likely to be interpreted as insulting, and/or inflammatory, nor clearly designed to provoke any individual or group. Please be considerate of others feelings, and they will be considerate of yours.
What did your doctor recommend you do once you were diagnosed? I was told to take fiber, did not help, only made it worse. Just trying to get a grasp on what I should be doing? I am thinking of changing doctors, perhaps he is not educated on MC.
Also, my symptoms seem to come and go, does anyone else have this? I will be ok for a few weeks then bam I'll be sick for a day or two then ok again. It has slowly gotten worse, but it is not to the point where I am sick everyday. Does this mean I don't have a food intolerance or that I do it just takes my body a while to react?
I was initially put on asacol, which didn't work for me. Fiber was not mentioned. Then the doc suggested prednisone, which I was reluctant to take. That's when I searched the internet and found out about the diet connection. I have successfully controlled my MC with diet alone now for 10 years. Unfortunately, as you will see from reading here, most docs know very little about MC. However, even if your doc knows little, an open mind helps. If he/she is willing to listen to you and try things that you suggest, it may work out. I am lucky to have a GI doc who is interested in learning from me. She is now suggesting food elimination to her MC patients based on my experience.
I think the pattern you describe, with symptoms coming and going, is very normal with MC, especially early on. The odds are that you do have a food intolerance, at least to gluten, if you have MC. It is not always easy to pinpoint it, however, because reaction times can vary. Also, it may be that certain combinations of foods overwhelm the gut at times, as well as stress and other factors.
Hang in there! Good luck.
Love,
Polly
Blessed are they who can laugh at themselves, for they shall never cease to be amused.
Based on my own experiences to date, it is not uncommon to have periods of time in between the yucky times. My pattern was full out flare, misery, non stop runs to the bathroom for over a month when I first started searching out help from doctors. I lost a lot of weight that month. No worries, it missed me too and has returned since Since then, which was September time frame of 2009, I go back and forth sometimes with days in between and sometimes up to a week or so in between. But I 'think' I'm learning that even though I may not be running to the potty constantly, daily, I am still experiencing other symptoms such as my joints hurting and acheing which may, or may not, be related to the MC. Still working on figuring that one out. I hope that you figure all this out and what's best for you. Good luck.
-Life isn’t about waiting for the storm to pass, it’s about learning to dance in the rain-
Kim
M
I agree with Polly and Kim - my symptoms usually cycled, over about a 2 to 3 week period, but it varied, at times, and once or twice, I had long, uninterrupted episodes of D.
I kept a food journal for 2 and a half years, but at first, I seemed to react to anything and everything. I decided to cut out gluten, and after doing that, I could see some possible connections between reactions and foods such as dairy, corn, sugar, and high fiber fruits, etc. My personal opinion is that for many of us, it is virtually impossible to figure out our food intolerances as long as gluten remains in the diet, because reactions seem random. I finally cut out all that stuff, and within a couple of weeks, I could see that I was on the right track. I continued that bland diet of mostly pork, chicken, potatoes, and rice, with occasional over-cooked veggies, such as squash, green beans, or broccoli, for almost 2 years, and after that, I was able to add some foods back into my diet, (but never gluten, of course).
One of the reasons why gluten-sensitivity is so difficult to detect, is because the immune system continues to produce antibodies to it at a very high level, for a long time, (stool tests at Enterolab, can often detect gluten antibodies up to 2 years after gluten has been completely withdrawn from the diet, and up to 1 year, they can reliably detect gluten antibodies almost 100% of the time).
Because gluten antibodies are produced at such a high level, for such a long period of time, even tiny traces of gluten will continue to cause damage to the gut, so the inflammation is very slow to subside, and as long as inflammation exists, we tend to continue to react to virtually anything that irritates the gut. The reactions may be continuous, or sporadic, but as long as the gut remains so hypersensitive, (IOW, until it is able to heal), we may react to many foods that simply "irritate" the gut, such as fiber, (a major problem), artificial sweeteners, certain spices, foods in the nightshade family, etc. Those foods won't initiate a reaction, when remission is in place, but as long as the gut is still inflamed, they can be almost as troublesome as the proteins that we are actually intolerant of, (the ones that trigger an autoimmune reaction, that causes the inflammation, in the first place), such as gluten, dairy, and soy. Of course, we are all different, with different sensitivities, and different reaction thresholds, so we have to consider the ways that others here have been able to achieve remission, and customize our own treatment program to suit our individual situation, and our personal lifestyle.
Good luck with developing and fine-tuning your own treatment program.
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.
Looking back on my symptoms, I probably had about 3 or 4 years of intermittent symptoms before I got my first serious flare, with constant D for a month. That's when I had a colonoscopy that provided the LC diagnosis. I think that many of us looking back can see that the symptoms started gradually, with good and bad times, but steadily getting worse. A few have had a sudden onset, but often that has been due to a medication like NSAIDs initiating the MC, not foods.
When my symptoms first started those many years ago, I eliminated dairy and things got better for a while. Then I thought I must have IBS, so I tried all the remedies for that.......increased fiber, peppermint oil, etc, but those just made it worse. After the LC diagnosis, I found this Forum, got tested with Enterolab, and based on those results eliminated gluten and soy. I had already eliminated dairy 4 years earlier. That made a huge difference, and I have been doing well and steadily healing for the past year, without medication. The fact that I was diagnosed relatively early in the disease process, as compared to others, probably means that I didn't have as much damage and could control by diet alone. Those with more damage often have to add some sort of medication, most commonly Entocort.
Rosie
Our greatest weakness lies in giving up. The most certain way to succeed is always to try just one more time………Thomas Edison
Rosie your story sounds quite similar. I had about 7 years of non-D symptoms including a Dx of FMS, which in retrospect was gluten intolerance causing muscle aches and joint pains. I also eliminated dairy for the past 3 years. Then this past April the 'big D' hit for about a month resulting in the scopes and biopsies confirming CC (and crohns).
Even with Entocort 9mg, and a strict paleo GF/YF/LF/DF diet I am still seeing a somewhat periodic cycle of not so good times. Overall things are definitely better. I guess its just time for patience and perseverance.
It has amazed me the number of people just on this site with almost identical stories, yet the medical community seems oblivious.
Joe, I also had arthritis-like symptoms and of course the fatigue. But my main complaint was asthma and my voice kept getting hoarser and scratchier. I was sounding worse than my 93 year old Mom, and feeling very self-conscious about it. Once I eliminated gluten, within just 1 week my voice had improved tremendously! Everyone remarked on it. Even now, the first symptom that I have gotten a bit of gluten is that my voice gets worse again. My asthma has improved dramatically too. I haven't had an attack in months. I find it amazing how much else besides the gut the MC affects.
You have a much tougher time of it with both the Crohn's and MC. I very much admire your attitude and persistence. It will pay off, but probably not as fast as you wish! Even though I'm doing so much better, even after a year I realize that I still have a ways to go.
Rosie
Our greatest weakness lies in giving up. The most certain way to succeed is always to try just one more time………Thomas Edison
I forgot to mention that my symptoms started out slowly, also. Early on, I had what I thought was the flu, which lasted for maybe a week, and then I was OK for about a month, and then I had a relapse. As time went on, I continued to relapse, every month or so, and so I decided that I must just be unlucky, and I was picking up food poisoning, rather than having the flu, so often. (I was making a lot of deliveries back in those days, and I was always short on time, so I was eating at all sorts of "fast food" places).
That went on for almost 2 years, and then one day the D started, and wouldn't stop. That's when it finally dawned on me that I was having problems due to something besides the flu or food poisoning.
Before the chronic D started, I had even suspected Lyme disease, because of the severe arthritis-like aches and pains, stiff, aching neck, etc.
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.
Tex & Rosie it does seem to be quite common that the symptoms build up slowly and then one day our systems just won't take it anymore.
Rossie I did forget to mention the fatigue, both mental and physical. Even now with the meds and diet, fatigue is my first symptom, quiclky followed by some level of gut or muscle pain. Overall with the meds and diet things are improving.
Rosie thanks for the encouraging words, and Tex thanks for all of your seemingly endless knowledge.
Even before I had worked out what caused my arthritis and aching joints, I always felt it stuck to the 'leaky bucket principle'.
That is, the water only comes out at a set rate, and if you add water faster than that it will overflow. My body can only process irritants at a certain rate. If I have too much of the bad stuff, it 'overflows' and causes symptoms. Unfortunately the bucket only has a very small leak, so it doesn't take much for it to overflow.
Since then, which was September time frame of 2009, I go back and forth sometimes with days in between and sometimes up to a week or so in between. But I 'think' I'm learning that even though I may not be running to the potty constantly, daily, I am still experiencing other symptoms such as my joints hurting and acheing which may, or may not, be related to the MC. Still working on figuring that one out. I hope that you figure all this out and what's best for you. Good luck.
