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another newbie
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
another newbie
About 6 weeks ago I was diagnosed with MC. I have been off of work for 7 weeks now. How do you go to work every day with this? I should say I have had fibromyalgia since I was 23 (49 now) and I have always done well with it until this! My stomach hurts in the middle and right above the belly button, my joints hurt (knees, ankles, thigh muscles especially). I never had trouble sleeping until this. I am fatigued. I walked 2 - 3 miles every day until this! I was on entocort but could not tolerate it. Monday I started asacol hd. Does it ever get better? I cry at least once every day, I am so depressed, although the cats like having me home with them every day...lol. I have been taking .25 (1 pill) of amitriptyline for the fibro since I was 23 and always did well. It was upped to 1.5 pills since I got this. It does help give me some appetite. I lost all appetite when I first got this and I am skinny to begin with. I did see a Ruemetologist (sp?) on Monday but don't have the results yet. I have never been so miserable in my life. How do you do it, how do you lead a normal life with this pain? I love WDW and fear I will never be able to go again. I am also afraid I will lose my job because of this. Thanks!
Sorry you're suffering so much now, but you have found the best place to help you find remission. It's too bad the entocort isn't something you can take. The main way to heal is through diet and going gluten free. You most likely will have other intolerances like dairy. I also found out that I was soy and egg intolerant. There is information for newbies to help you sort all this out on the main page of this board.
I had a difficult time working when all this first hit me and I was able to take some medical leave while I tried to sort things out. If you can take medical leave, it helps. If not, the sooner you make dietary changes the better you will feel and will be able to manage your symptoms. Have you tried using Pepto Bisomol and/or Immodium? These help with symptoms, but the diet is critical to improving your life.You can get tested through Enterolab to determine your key intolerances and then fine tune your diet as you go along. Tex, our fearless leader, will be along to give you important information. You are not alone and many of us have found our way through this and are continuing to do so, JoAnn
Courage is being scared to death, but saddling up anyway. John Wayne
Thanks JoAnn. I do take Immodium as needed. Guess I need to do the diet check now. The gastro told me I could eat anything I wanted...lol. I was in the hospital for 4 days when I first got this, I was going 15 - 20 times a day! Now it is 5 or 6, or 2 or 3 sometimes. The pain and fatigue are the worse.
Almost everyone is told that diet doesn't matter. It's the biggest myth out there associated with MC and is perpetuated by the very doctors who should know better.
You'll have to ignore that information because it's the only way to wellness. One food that might really help you feel better is the Sticky or Gooey rice that is mentioned in a thread that Polly started today. I make it all the time and use my crockpot. Use sweet or glutinous rice, put 1 cup rice and 5 cups water in a crockpot and cook on low overnight. You'll have a wonderful, soothing pot of glutinous rice that will help your tummy and gut feel better. Hope that helps you get started on a new way of eating. JoAnn
You'll have to ignore that information because it's the only way to wellness. One food that might really help you feel better is the Sticky or Gooey rice that is mentioned in a thread that Polly started today. I make it all the time and use my crockpot. Use sweet or glutinous rice, put 1 cup rice and 5 cups water in a crockpot and cook on low overnight. You'll have a wonderful, soothing pot of glutinous rice that will help your tummy and gut feel better. Hope that helps you get started on a new way of eating. JoAnn
Courage is being scared to death, but saddling up anyway. John Wayne
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Joefnh
- Rockhopper Penguin
- Posts: 2478
- Joined: Wed Apr 21, 2010 8:25 pm
- Location: Southern New Hampshire
Hi Catsrule and welcome to the group
Like you I was Dxd with FMS in 1998 after 3 years of widespread pain, and at the time was having some symptoms of D but too sporadic to be an 'issue'
Since 1995 I have had pain in my joints including my hips, knees and generally lower back. Like you I took Amitriptyline and Ultram for the pain.
Starting last March I began experiencing significant D and abdominal pain in my lower right and center of my abdomen. By April the D was 15 - 20 times a day and the pain was unbearable.
I was Dxd with CC and Crohns disease in April and started Entocort at 9mg a day. Due to this, I was out of work for almost 2 months while the Entocort took effect and more importantly the diet helped me out. Since roughly late April I have been eating gluten free, soy free and mostly dairy free.
Thanks to finding this site I had discovered this caring group of people, and the incredible knowledge here.
It does get easier and with some basic changes you can and will do well. MC requires changes in lifestyle and a change in your diet. But in the end you can mange this.
Best wishes
--Joe
Like you I was Dxd with FMS in 1998 after 3 years of widespread pain, and at the time was having some symptoms of D but too sporadic to be an 'issue'
Since 1995 I have had pain in my joints including my hips, knees and generally lower back. Like you I took Amitriptyline and Ultram for the pain.
Starting last March I began experiencing significant D and abdominal pain in my lower right and center of my abdomen. By April the D was 15 - 20 times a day and the pain was unbearable.
I was Dxd with CC and Crohns disease in April and started Entocort at 9mg a day. Due to this, I was out of work for almost 2 months while the Entocort took effect and more importantly the diet helped me out. Since roughly late April I have been eating gluten free, soy free and mostly dairy free.
Thanks to finding this site I had discovered this caring group of people, and the incredible knowledge here.
It does get easier and with some basic changes you can and will do well. MC requires changes in lifestyle and a change in your diet. But in the end you can mange this.
Best wishes
--Joe
Joe
Welcome catsrule.
Great name, BTW. The cats rule in my house
From reading the comments on this board and the information for newbies, you will see that we have found that diet plays the major role in this condition. Medications can also be a cause.
You can do a stool sample with Enterolab to find out your intolerances. Or you can just start a process of elimination to sort out what is triggering it for you. Or you can do both.
Most of us here need to avoid gluten and dairy, and over half of us also need to avoid soy. A good way to start is to limit what you are eating down to basics for a while, and totally eliminate any trace of the problem ingredients. Typical things people go down to include just rice, chicken, eggs, a lowish fibre vegetable such as sweet potato, and maybe some well cooked apple pulp. Check that any vitamin supplements or medications do not contain traces of gluten, dairy (lactose or casein) or soy.
From there you can start a diary listing what foods you eat, and see if some things cause you more problems than others.
You can get your life back. Many folk here have.
Lyn
Great name, BTW. The cats rule in my house
From reading the comments on this board and the information for newbies, you will see that we have found that diet plays the major role in this condition. Medications can also be a cause.
You can do a stool sample with Enterolab to find out your intolerances. Or you can just start a process of elimination to sort out what is triggering it for you. Or you can do both.
Most of us here need to avoid gluten and dairy, and over half of us also need to avoid soy. A good way to start is to limit what you are eating down to basics for a while, and totally eliminate any trace of the problem ingredients. Typical things people go down to include just rice, chicken, eggs, a lowish fibre vegetable such as sweet potato, and maybe some well cooked apple pulp. Check that any vitamin supplements or medications do not contain traces of gluten, dairy (lactose or casein) or soy.
From there you can start a diary listing what foods you eat, and see if some things cause you more problems than others.
You can get your life back. Many folk here have.
Lyn
WELCOME!!! 
I can't add anything to the suggestions given. I'm sure you're reading as much as you can here. There is a wealth of experience and information here. We understand how you're feeling and have listening ears. There is hope and you can get your life back.
Gloria
I can't add anything to the suggestions given. I'm sure you're reading as much as you can here. There is a wealth of experience and information here. We understand how you're feeling and have listening ears. There is hope and you can get your life back.
Gloria
You never know what you can do until you have to do it.
Hi,
Welcome to our internet family. I'm sorry that your symptoms are so numerous and so severe, but yes, it does get better. In the early stages, we have to take life one day at a time, and let tomorrow worry about itself, but as we learn to fine-tune our personal treatment program, it gets easier, and the days get better and better. This disease can't be cured, but the symptoms can certainly be controlled.
Since your symptoms seem to be so numerous, do you have restless leg syndrome, (RLS)? People with fibromyalgia are 10 times as likely to have it as someone in the general population, and it is somewhat common with MC, also, though not a high percentage of us have it. Often, if you can control the RLS, the fibromyalgia symptoms will usually be significantly improved, as well. It's known that a high percentage of people with both fibromyalgia and restless leg syndrome have a magnesium deficiency issue. The standard blood test for magnesium will not detect magnesium deficiency until the cells of our body are severely depleted, because our bodies are programmed to keep the serum magnesium level relatively constant at all times. I was having major problems with leg/foot cramps and RLS, and couldn't figure out why. Taking a supplement with the "B" vitamins helped, but then later, I noticed that I couldn't take a deep breath sometimes, and at night, feeling the need to take a deep breath, and being unable to do so, would often keep me awake. I knew that this was a symptom for magnesium deficiency, so I asked my doctor about it and he did a blood test. Naturally, the result was normal, so he informed me that there was no point in taking a magnesium supplement. I started taking one anyway, and in 2 or 3 days, my symptoms were gone - no more shortness of breath, no more foot/leg cramps, and no more RLS. If I get lax on my magnesium intake for a week or so, the symptoms will begin to return. Upping my magnesium intake again, will promptly resolve the problem, completely. If you have RLS, and you haven't tried this before, it's definitely worth a try. It's better to get it from your diet, though, than from pills, because magnesium is a laxative, so for anyone with MC, taking a magnesium supplement can be pretty tricky. If this doesn't apply to you, please forgive me for wasting your time - I just thought that you might be interested in it, in view of your many symptoms.
Again, welcome aboard, and please feel free to ask anything.
Tex
Welcome to our internet family. I'm sorry that your symptoms are so numerous and so severe, but yes, it does get better. In the early stages, we have to take life one day at a time, and let tomorrow worry about itself, but as we learn to fine-tune our personal treatment program, it gets easier, and the days get better and better. This disease can't be cured, but the symptoms can certainly be controlled.
Since your symptoms seem to be so numerous, do you have restless leg syndrome, (RLS)? People with fibromyalgia are 10 times as likely to have it as someone in the general population, and it is somewhat common with MC, also, though not a high percentage of us have it. Often, if you can control the RLS, the fibromyalgia symptoms will usually be significantly improved, as well. It's known that a high percentage of people with both fibromyalgia and restless leg syndrome have a magnesium deficiency issue. The standard blood test for magnesium will not detect magnesium deficiency until the cells of our body are severely depleted, because our bodies are programmed to keep the serum magnesium level relatively constant at all times. I was having major problems with leg/foot cramps and RLS, and couldn't figure out why. Taking a supplement with the "B" vitamins helped, but then later, I noticed that I couldn't take a deep breath sometimes, and at night, feeling the need to take a deep breath, and being unable to do so, would often keep me awake. I knew that this was a symptom for magnesium deficiency, so I asked my doctor about it and he did a blood test. Naturally, the result was normal, so he informed me that there was no point in taking a magnesium supplement. I started taking one anyway, and in 2 or 3 days, my symptoms were gone - no more shortness of breath, no more foot/leg cramps, and no more RLS. If I get lax on my magnesium intake for a week or so, the symptoms will begin to return. Upping my magnesium intake again, will promptly resolve the problem, completely. If you have RLS, and you haven't tried this before, it's definitely worth a try. It's better to get it from your diet, though, than from pills, because magnesium is a laxative, so for anyone with MC, taking a magnesium supplement can be pretty tricky. If this doesn't apply to you, please forgive me for wasting your time - I just thought that you might be interested in it, in view of your many symptoms.
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.
Thanks Tex. No that is probably the only thing I don't have....lol. My stomach cramped up bad tonight and I am thinking asacol did it. I do not tolerate drugs well. I was on Entocort for 10 days and I had insomnia very bad, only 1 - 2 hours sleep at night and racing heart. How do you go to work feeling like this? How do you fight the depression and fatigue?
You may be right about the Asacol. A fair number of members here have had adverse reactions to it.
Tex
Sometimes you can't, if the symptoms are bad enough. I was lucky - I was self employed, so if I showed up late, or had to sneak out to clean up from an "accident", or take a nap, or whatever, it wasn't the end of the world.catsrule wrote:How do you go to work feeling like this?
You just have to take it one day at a time, and realize that it will get better as you work out an effective treatment program, and stick with it. The brain fog and extreme fatigue will gradually go away as you get your symptoms under control. They're due to neurological effects caused by gluten-sensitivity.catsrule wrote:How do you fight the depression and fatigue?
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.