New Member, My Story
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New Member, My Story
Hello All! I was diagnosed with MC in September, and I'm an 18 year old female. After reading some posts on here I realized that my form of the disease is much different than most on here so I thought I would share and maybe get some thoughts. I've had soft stools ever since I can remember, but maybe twice per day so very tolerable. I was diagnosed with Lactose Intolerance (Never tested), and tried to avoid most dairy but it didn't change anything. In the spring of 2015 I became very ill, high fever for over a week, a throat infection. They never found out what I had and I recovered quickly but in the next few weeks developed post viral arthritis along with bad fatigue. This went on throughout the year and became debilitating. I was treated with 1000 mg of Naproxen all year to manage the pain but it only got worse. Prednisone was the only thing that made the pain go away, and it also completely cleared up my stomach issues. I was on two week doses three times, but the pain would slowly come back. I went to specialists for lots of tests and my ANA markers are positive, which is a marker for autoimmune diseases. I went to a gastro specialist, just to cover all the bases while trying to figure out my joint pain. I was scoped and diagnosed with MC which the doctor thought was caused by taking the Naproxen for so long and she thought the joint pain could be from the MC. I started Budesonide, which slowly took away all pain, and slightly improved my soft stools. I switched to Uceris because after two rounds of Budesonide when I was weaned off symptoms came back. Now on Uceris still no pain but the fatigue is back in full force, and twice weekly Migranes which started when switching to Uceris, however my stomach is slightly better. I have never had any cramping, excess gas, bloating, or severe diarrhea. Just slightly soft stools, and the joint pain, fatigue. Is this really MC? And will my stomach get worse? I have no dietary restrictions and my stomach is completely tolerable. I'm very worried that the Uceris (steroid) is just helping the inflammation of my joints while I'm taking it and it will come back. Thank You all!
Hello, MissHappy! Your story here was very detailed and clear, so I was tempted to have an opinion about it.
Firstly, MC is not so much a disease as an end point. Several disease processes can lead to the same end point. MC can be caused by drugs (NSAIDS like Naproxen and several more), food and possibly an immune reaction to bacteria and viruses. Based on research, I don’t think your doctor has made an unreasonable assumption about Naproxen as a possible cause of you MC, but I don’t think it’s for sure either. Your stomach issues seem to be older than your Naproxen use. I would have liked to know if your stomach issues would have improved when quitting the Napoxen without the help of steroids.
I have 3-4 autoimmune diseases myself, and your joint pain and ANA worries me. Joint pain, ANA, MC and good steroid response is indicative of something autoimmune going on other than MC. MC means leaky gut which is a prerequisite for several autoimmune diseases. 40-50 % with MC have one or more (other) autoimmune diseases. It took only a couple of years after my MC debuted at the age of 28 before I had my (next) autoimmune disease. What I’m thinking is that there might be something autoimmune going on, possibly rheumatic or liver-related. It’s not uncommon to take a few years after the symptoms debut before the doctors are able to diagnose autoimmune diseases.
Are you sure your autoimmune work up has been comprehensive enough? Can you say anything about what they have checked?
— Tor
PS: I’m not known for my optimism.
Firstly, MC is not so much a disease as an end point. Several disease processes can lead to the same end point. MC can be caused by drugs (NSAIDS like Naproxen and several more), food and possibly an immune reaction to bacteria and viruses. Based on research, I don’t think your doctor has made an unreasonable assumption about Naproxen as a possible cause of you MC, but I don’t think it’s for sure either. Your stomach issues seem to be older than your Naproxen use. I would have liked to know if your stomach issues would have improved when quitting the Napoxen without the help of steroids.
I have 3-4 autoimmune diseases myself, and your joint pain and ANA worries me. Joint pain, ANA, MC and good steroid response is indicative of something autoimmune going on other than MC. MC means leaky gut which is a prerequisite for several autoimmune diseases. 40-50 % with MC have one or more (other) autoimmune diseases. It took only a couple of years after my MC debuted at the age of 28 before I had my (next) autoimmune disease. What I’m thinking is that there might be something autoimmune going on, possibly rheumatic or liver-related. It’s not uncommon to take a few years after the symptoms debut before the doctors are able to diagnose autoimmune diseases.
Are you sure your autoimmune work up has been comprehensive enough? Can you say anything about what they have checked?
— Tor
PS: I’m not known for my optimism.
Life's hard and then you die
Hi,
Welcome to the forum. Wow! You've really been mistreated. It's not lactose that's the main problem with dairy products (although we are intolerant of lactose — everyone who has intestinal inflammation automatically becomes lactose intolerant). The problem is casein, the main protein in milk. Our immune system produces antibodies to casein very similar to the antibodies it produces against gluten. (We are all gluten intolerant, despite negative celiac test results.)
The arthritis is a symptom of MC. My arthritis was so bath that I had to use a cane to walk when I was recovering. The Naproxen was the worst thing you could have used, especially for a year. That was guaranteed to make the inflammation in your intestines worse. It's also probably what caused your ANA to turn positive.
Some of us do not have diarrhea. Some of us have constipation, some have alternating constipation and diarrhea, and a few have normal bowel movements. Most GI docs do not realize that.
Budesonode is the best medication that the medical community has to treat diarrhea-dominant MC. But it only treats the symptoms. And it will make constipation-dominant MC worse. It cannot stop the symptoms from being regenerated every time you eat a meal. To do that, you must change your diet to avoid the foods that are causing your immune system to produce antibodies which provoke the cytokines and other proinflammatory agents that cause the inflammation.
Yes, you really have MC, and yes, it can always get worse, if not properly treated. Most GI docs don't recognize the use of diet changes to treat MC. They're not that sophisticated (at least not yet). That's why most of their patients relapse. The steroids may eventually cause osteoporosis. You're too young to expect to safely take them for the rest of your life.
Again, welcome aboard, and please feel free to ask anything.
Tex
Welcome to the forum. Wow! You've really been mistreated. It's not lactose that's the main problem with dairy products (although we are intolerant of lactose — everyone who has intestinal inflammation automatically becomes lactose intolerant). The problem is casein, the main protein in milk. Our immune system produces antibodies to casein very similar to the antibodies it produces against gluten. (We are all gluten intolerant, despite negative celiac test results.)
The arthritis is a symptom of MC. My arthritis was so bath that I had to use a cane to walk when I was recovering. The Naproxen was the worst thing you could have used, especially for a year. That was guaranteed to make the inflammation in your intestines worse. It's also probably what caused your ANA to turn positive.
Some of us do not have diarrhea. Some of us have constipation, some have alternating constipation and diarrhea, and a few have normal bowel movements. Most GI docs do not realize that.
Budesonode is the best medication that the medical community has to treat diarrhea-dominant MC. But it only treats the symptoms. And it will make constipation-dominant MC worse. It cannot stop the symptoms from being regenerated every time you eat a meal. To do that, you must change your diet to avoid the foods that are causing your immune system to produce antibodies which provoke the cytokines and other proinflammatory agents that cause the inflammation.
Yes, you really have MC, and yes, it can always get worse, if not properly treated. Most GI docs don't recognize the use of diet changes to treat MC. They're not that sophisticated (at least not yet). That's why most of their patients relapse. The steroids may eventually cause osteoporosis. You're too young to expect to safely take them for the rest of your life.
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.