hello, I'm new here! my name is rebecca, but I go by mars online. it's very nice to meet you ^^ here's a little bit about me and my experiences with LC!
I was very young when I started having symptoms of colitis - only 14 or 15 years old - and it was mild at first. my main complaint was abdominal pain rather than diarrhea, but things got progressively worse and diarrhea became more frequent to the point where I stopped eating to prevent being sick at school. I was officially diagnosed with lymphocytic colitis in 2016 at only 17 years old and around 85-90 lbs. my doctors believe it was triggered by the NSAIDs I was taking for period cramps or an SSRI I had just started and stopped. I had success with entocort/budesonide, but had a small flare again a few years afterwards that was solved with a variety of medications.
things were okay again until a little before thanksgiving when I was once again prescribed an SSRI. at first, nothing happened! I was so happy,,,,,but something started to seem off and I started having GI issues here and there again. the past few weeks have been incredibly difficult, with worsening diarrhea, abdominal pain, nausea, and even occasional flares of joint pain. this all comes in flares every few days with days in between where I feel slightly better. it seems eerily similar to when I had LC.
I'm sick of sleepless nights spent running to the bathroom five or six times. it's absolute torture ): I have a doctor's appointment on tuesday the 29th and I'm not looking forward to it. that's why I'm joining this forum now, to meet people in similar situations and get advice.
unfortunately, my experiences with hospitals and doctors caused bad anxiety that developed into a social phobia and panic disorder. I was diagnosed with agoraphobia and emetophobia, and I fear eating in public or going anywhere without a safe bathroom. the testing I went through to get my diagnosis was pretty traumatic, same with being sick at school and embarrassing myself in front of everyone. it feels like I'll never be able to move on with my life. I can't finish college or get a job, and it's hard to even see friends. covid certainly isn't helping!
anyways, that's all! I look forward to getting to know you guys (:
hello everyone!
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Re: hello everyone!
Hello Mars,
Welcome to the group. Your current pattern of symptoms sounds just like mine, when my symptoms finally got out of hand, and I had to find a solution, because I couldn't live like that. If we want to maintain long-term remission, we have to make some major diet changes, because we're reacting to certain foods. That is to say, our immune systems are producing antibodies to certain foods, and these elevated antibody levels are causing us to react to these foods. These foods didn't cause our microscopic colitis (MC), but as the disease develops, these food sensitivities are triggered by the inflammation that causes MC. And once triggered, most of them are permanent.
That's why the medical approach gives only temporary relief. The medical community hasn't officially recognized this food connection yet, so they can only prescribe anti-inflammatory drugs, such as budesonide. Published research shows that at least 85 % of MC patients relapse a few days to a few weeks after the budesonide treatment is ended. To maintain long-term remission, we have to change our diet permanently. Yes, we can get our life back. I've been in remission for over 15 years now, and so have many, many, other members who have joined us here over the years.
I hope this information is helpful. Again, welcome aboard,and please feel free to ask anything.
Tex
Welcome to the group. Your current pattern of symptoms sounds just like mine, when my symptoms finally got out of hand, and I had to find a solution, because I couldn't live like that. If we want to maintain long-term remission, we have to make some major diet changes, because we're reacting to certain foods. That is to say, our immune systems are producing antibodies to certain foods, and these elevated antibody levels are causing us to react to these foods. These foods didn't cause our microscopic colitis (MC), but as the disease develops, these food sensitivities are triggered by the inflammation that causes MC. And once triggered, most of them are permanent.
That's why the medical approach gives only temporary relief. The medical community hasn't officially recognized this food connection yet, so they can only prescribe anti-inflammatory drugs, such as budesonide. Published research shows that at least 85 % of MC patients relapse a few days to a few weeks after the budesonide treatment is ended. To maintain long-term remission, we have to change our diet permanently. Yes, we can get our life back. I've been in remission for over 15 years now, and so have many, many, other members who have joined us here over the years.
I hope this information is helpful. 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.
Re: hello everyone!
Incidentally, I forgot to mention, your need for SSRIs is almost surely caused by a chronic magnesium deficiency. MC depletes magnesium, and so does budesonide and many other drugs. A chronic magnesium deficiency can cause many different symptoms, including anxiety, depression, fatigue, muscle weakness, and a further weakened immune system.
Most doctors don't understand our magnesium deficiencies, and they continue to overlook magnesium because they don't understand how to properly test for magnesium. They use a serum magnesium test, but the blood contains only 1 or 2 percent of the body's magnesium, and that level is automatically maintained in a normal range by the body. The proper test to use is the red blood cell (RBC) magnesium test, because that test will show how much magnesium we have available in our cells. Most MC patients seem to need more magnesium than most people who don't have the disease.
Tex
Most doctors don't understand our magnesium deficiencies, and they continue to overlook magnesium because they don't understand how to properly test for magnesium. They use a serum magnesium test, but the blood contains only 1 or 2 percent of the body's magnesium, and that level is automatically maintained in a normal range by the body. The proper test to use is the red blood cell (RBC) magnesium test, because that test will show how much magnesium we have available in our cells. Most MC patients seem to need more magnesium than most people who don't have the 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.