Hello Everyone, I was diagnosed with mc/lc about a month ago - have been having a flare up since Oct. I am starting to experience fatigue and depression and I don't know if it is because of the mc. Would I be getting those symptoms if I am having D 4-8 times a day?
I tend to have D in waves of 3 times after a meal and then I seem to be ok for a while or until I have another meal.
I am also experience some abdominal discomfort that includes the left lower side of my back. Is this normal for mc?
I am so glad I found this board and am looking forward to learning from all of you - thanks in advance for the info.
Annie :)
Newbie needs help with symptoms!
Moderators: Rosie, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi Annie,
Welcome to our internet family. It's a shame that the GI docs don't tell newly-diagnosed patients what to expect from this disease, but that may be because they really don't know what to expect - they don't understand MC very well, at all.
MC affects everyone somewhat differently. Some have only D, while others have so many symptoms that it's almost unbelievable that they could all be due to a single disease.
Back when I was reacting, I felt like I had the mother of all flu's. I had uncontrollable D, headaches, sometimes migraines, bloating, cramps, backaches, joint pain, (just like rheumatoid arthritis), extreme fatigue, brain fog, sometimes nausea and vomiting, etc. Sometimes I felt as though I couldn't get out of bed, because of all the aches and pains, the dizziness and/or migraines, but I had to get up anyway, to run to the bathroom.
I usually had D only 6 to 8 times per day, but some members here have experienced D up to 40 to 50 times per day. Needless to say, they couldn't afford to stray very far from a bathroom.
So yes, the symptoms that you mentioned are quite common with MC. And yes, the need to have a bowel movement, (BM), soon after a meal, (especially breakfast), is also a common characteristic for many of us.
Did your doctor prescribe some type of treatment? If so, is it helping?
Please feel free to ask anything, and again, welcome aboard.
Tex (Wayne)
Welcome to our internet family. It's a shame that the GI docs don't tell newly-diagnosed patients what to expect from this disease, but that may be because they really don't know what to expect - they don't understand MC very well, at all.
MC affects everyone somewhat differently. Some have only D, while others have so many symptoms that it's almost unbelievable that they could all be due to a single disease.
Back when I was reacting, I felt like I had the mother of all flu's. I had uncontrollable D, headaches, sometimes migraines, bloating, cramps, backaches, joint pain, (just like rheumatoid arthritis), extreme fatigue, brain fog, sometimes nausea and vomiting, etc. Sometimes I felt as though I couldn't get out of bed, because of all the aches and pains, the dizziness and/or migraines, but I had to get up anyway, to run to the bathroom.
I usually had D only 6 to 8 times per day, but some members here have experienced D up to 40 to 50 times per day. Needless to say, they couldn't afford to stray very far from a bathroom.So yes, the symptoms that you mentioned are quite common with MC. And yes, the need to have a bowel movement, (BM), soon after a meal, (especially breakfast), is also a common characteristic for many of us.
Did your doctor prescribe some type of treatment? If so, is it helping?
Please feel free to ask anything, and again, welcome aboard.
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.
Hi Annie,
Endless months of D are enough to make anyone tired and depressed.
Seriously, after a period of constant D you can easily start to be malnourished, as your body has a hard time absorbing nutrients. For example, your levels of vitamins such as B12 are likely to be low, and these can definitely have and impact on fatigue levels. The reduced nutrition levels can also make us more susceptible to depression, and the relentlessness of it all really will get anyone down.
The lack of understanding from family, friends and even doctors, also messes with your head.
However, you have come to the right place, and we'll soon getting you heading in the right direction. Have a look at the information that is posted especially for newbies, especially the bits about diet.
We are all slightly different in how MC shows itself. Some folk get a lot of pain, others none. Some find their pain is quite localised, as you report it. So yes, it could be caused by the LC. Of course, if in any doubt it is always wise to discuss with your doctor to rule out any additional problems that may be a cause.
As to the frequency and timing, you may find this old thread gives you some ideas on what others experience. http://www.perskyfarms.com/phpBB2/viewtopic.php?t=9615
Lyn
Endless months of D are enough to make anyone tired and depressed.
Seriously, after a period of constant D you can easily start to be malnourished, as your body has a hard time absorbing nutrients. For example, your levels of vitamins such as B12 are likely to be low, and these can definitely have and impact on fatigue levels. The reduced nutrition levels can also make us more susceptible to depression, and the relentlessness of it all really will get anyone down.
The lack of understanding from family, friends and even doctors, also messes with your head.
However, you have come to the right place, and we'll soon getting you heading in the right direction. Have a look at the information that is posted especially for newbies, especially the bits about diet.
We are all slightly different in how MC shows itself. Some folk get a lot of pain, others none. Some find their pain is quite localised, as you report it. So yes, it could be caused by the LC. Of course, if in any doubt it is always wise to discuss with your doctor to rule out any additional problems that may be a cause.
As to the frequency and timing, you may find this old thread gives you some ideas on what others experience. http://www.perskyfarms.com/phpBB2/viewtopic.php?t=9615
Lyn
Thanks so much Tex and Lyn. Your info made me feel so much better! I will have Q's for you guys - I am really confused how to begin testing the foods I may be intolerent too, etc. I will be starting a log tomorrow with the food I am eating and the effect it has on the mc.
I don't know what to do about medication yet. My dr wanted to start me on a medication that begins with an m (can't remember the name of it right now) but I wanted to try metamucil first - not doing too much too help except for adding a bit of bulk to the bms. I have to call his office to let him know how I am doing but I just don't feel like I am going to get the info and help I need.
Take care
Annie
I don't know what to do about medication yet. My dr wanted to start me on a medication that begins with an m (can't remember the name of it right now) but I wanted to try metamucil first - not doing too much too help except for adding a bit of bulk to the bms. I have to call his office to let him know how I am doing but I just don't feel like I am going to get the info and help I need.
Take care
Annie
Annie
Annie,
The easiest way to determine which foods you are intolerant of, is to order a test kit, and send a stool sample to Enterolab, in Dallas, Texas. This is the only lab in the world, that offers stool tests for food intolerances, that are sensitive, accurate, and reliable. Unfortunately, most insurance companies will not pay for these tests, (though some will, if they are ordered by a doctor). The problem is, most doctors do not believe in stool testing, because they believe that diet has nothing to do with MC. You can read more about their tests here:
https://www.enterolab.com/Home.htm
Alternatively, you can test yourself, by keeping a food/reaction diary, and carefully following an elimination diet:
http://www.perskyfarms.com/phpBB2/viewtopic.php?t=731
http://www.perskyfarms.com/phpBB2/viewtopic.php?t=732
The medication that your doctor had in mind is probably one of the forms of mesalamine, (brand names include Asacol, Lialda, Pentasa, Canasa, etc.).
Metamucil is a laxative. Trust me, most of us do not need a laxative, when we have active MC. Metamucil will irritate the gut, and add to the inflammation, just the opposite of what needs to be done, to allow your gut to heal. Metamucil benefits some people who have IBS, but it is contraindicated for MC. For MC patients, the less fiber in the diet, the better off we are. MC is an inflammatory bowel disease, related to Crohn's disease, and ulcerative colitis. It most definitely is not closely related to IBS, nor can it be effectively treated by most IBS remedies.
Tex
The easiest way to determine which foods you are intolerant of, is to order a test kit, and send a stool sample to Enterolab, in Dallas, Texas. This is the only lab in the world, that offers stool tests for food intolerances, that are sensitive, accurate, and reliable. Unfortunately, most insurance companies will not pay for these tests, (though some will, if they are ordered by a doctor). The problem is, most doctors do not believe in stool testing, because they believe that diet has nothing to do with MC.
You can read more about their tests here:https://www.enterolab.com/Home.htm
Alternatively, you can test yourself, by keeping a food/reaction diary, and carefully following an elimination diet:
http://www.perskyfarms.com/phpBB2/viewtopic.php?t=731
http://www.perskyfarms.com/phpBB2/viewtopic.php?t=732
The medication that your doctor had in mind is probably one of the forms of mesalamine, (brand names include Asacol, Lialda, Pentasa, Canasa, etc.).
Metamucil is a laxative. Trust me, most of us do not need a laxative, when we have active MC. Metamucil will irritate the gut, and add to the inflammation, just the opposite of what needs to be done, to allow your gut to heal. Metamucil benefits some people who have IBS, but it is contraindicated for MC. For MC patients, the less fiber in the diet, the better off we are. MC is an inflammatory bowel disease, related to Crohn's disease, and ulcerative colitis. It most definitely is not closely related to IBS, nor can it be effectively treated by most IBS remedies.
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.
Welcome, Annie.
I was diagnosed in late summer 09 after a horrendous time with D. I joined this forum and learned more in a few days about my MC (I have the LC version) than I did in several months with my GI (who's a nice guy but now I am educating him on MC!). My sad little saga is elsewhere in the forum so I won't go through it again except to say that I was housebound, wearing a diaper at night, lost 40lbs, and didn't know what hit me. Now I'm gluten and dairy free, I go out, eat out (carefully) and I've even been away on a trip.
Yes you will have fatigue and depression - your D is robbing your body of vital nutrients, and your intestines are out of control. As other as have said, you'll be low in B and D in particular. Be careful with what you take - I was told to drink gatorade or pedialyte to replenish minerals etc, and both made the D worse.
I too was worse after eating - gravity seemed to play a part, in that things got pushed through after another meal arrived inside. The stabbing pain was unbelievable. Once I took gatorade, timing didn't make a difference - I was in the loo nearly all the time.
The pain in your left back is very familiar to me - I thought my left kidney must be failing, but a doctor in the family told me what organs are where and where pain manifests itself. Now I am gf and df, I haven't had that particular pain for months.
Metamucil is not a good idea at all - the last thing you need is fibre. I was told to try the same thing - fibre powder to add bulk to stools. Didn't help at all and likely made things worse. It sounds like a good thing to try because when people have D, bulking up the stool would surely stop the runniness, but this is MC not a bit of D from another cause. We have a problem with fibre. That's why many of us can't take raw veggies/fruit or even some cooked ones. Broccoli, cauli, and beans are agony for me so they're out for a long time.
Another favoured solution from GPs is Imodium/Pepto. Sure they work very short time but they only mask the D so you end up with C, plus they don't heal the gut. I was also put on that. Didn't cure my MC, what a surprise!
I am one of the lucky ones. I learned here that gluten is the enemy, and as soon as I cut it out (as best as could as it's hidden everywhere) it was like night and day. I went from 20-30 daily bouts of D to less than 10, and removing dairy and soy got me down to 1 bm a day which is near normal is frequency and condition. I take 6 Pentasa (5-ASA meds) a day; I was on 8 last year.
Over Christmas and New year I got glutenated as people forgot to mention an ingredient, but overall I ate well and without much trouble. I notice now that when I do take a hit it is not as painful or as long lasting as before, so something is going right inside.
Tiredness is still a problem as is some depression, but life is generally pretty good. Now if only the Canadian govt would add MC to the income tax relief section, it would be a cheaper life too.
Maxine
I was diagnosed in late summer 09 after a horrendous time with D. I joined this forum and learned more in a few days about my MC (I have the LC version) than I did in several months with my GI (who's a nice guy but now I am educating him on MC!). My sad little saga is elsewhere in the forum so I won't go through it again except to say that I was housebound, wearing a diaper at night, lost 40lbs, and didn't know what hit me. Now I'm gluten and dairy free, I go out, eat out (carefully) and I've even been away on a trip.
Yes you will have fatigue and depression - your D is robbing your body of vital nutrients, and your intestines are out of control. As other as have said, you'll be low in B and D in particular. Be careful with what you take - I was told to drink gatorade or pedialyte to replenish minerals etc, and both made the D worse.
I too was worse after eating - gravity seemed to play a part, in that things got pushed through after another meal arrived inside. The stabbing pain was unbelievable. Once I took gatorade, timing didn't make a difference - I was in the loo nearly all the time.
The pain in your left back is very familiar to me - I thought my left kidney must be failing, but a doctor in the family told me what organs are where and where pain manifests itself. Now I am gf and df, I haven't had that particular pain for months.
Metamucil is not a good idea at all - the last thing you need is fibre. I was told to try the same thing - fibre powder to add bulk to stools. Didn't help at all and likely made things worse. It sounds like a good thing to try because when people have D, bulking up the stool would surely stop the runniness, but this is MC not a bit of D from another cause. We have a problem with fibre. That's why many of us can't take raw veggies/fruit or even some cooked ones. Broccoli, cauli, and beans are agony for me so they're out for a long time.
Another favoured solution from GPs is Imodium/Pepto. Sure they work very short time but they only mask the D so you end up with C, plus they don't heal the gut. I was also put on that. Didn't cure my MC, what a surprise!
I am one of the lucky ones. I learned here that gluten is the enemy, and as soon as I cut it out (as best as could as it's hidden everywhere) it was like night and day. I went from 20-30 daily bouts of D to less than 10, and removing dairy and soy got me down to 1 bm a day which is near normal is frequency and condition. I take 6 Pentasa (5-ASA meds) a day; I was on 8 last year.
Over Christmas and New year I got glutenated as people forgot to mention an ingredient, but overall I ate well and without much trouble. I notice now that when I do take a hit it is not as painful or as long lasting as before, so something is going right inside.
Tiredness is still a problem as is some depression, but life is generally pretty good. Now if only the Canadian govt would add MC to the income tax relief section, it would be a cheaper life too.
Maxine
Maxine
-
Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Annie
my symptoms and diagnosis timetable was similar to yours. it was a hellish few months.
my GI specialist handed me a heap of scripts 5 days before xmas and said see you in a month.
no additional information or support
I found this site 2 days later and it has been my saviour!
since then i have followed very strict Gluten Free diet, yeast Free and lactose free
now that the D has stopped (10 days D free woo hoo) as i start eating foods i can tell if it agrees with me or not.
I am saving up to do the comprehensive testing so i can have accurate results, for the time being listening and observing my bodies reactions to food (colic, bloating, pain, inflammation, headaches) has been an ok option
when i first joined Tex said to me I will get my life back - at the time i didnt believe it. I spend as much time as i can reading hte previous discussions on this site and every time i gain very valuable information
within 3 weeks of diagnosis i have gained reasonable control and now that the D is under control...today is the first time i have worn a light coloured skirt out of the house. I have spent the last 3 months only wearing black skirts and pants
I am also proud that the effort and time i have put into understanding this demon and learning how to manage it has helped me to cope with life. in the last week the clutch in car 'blew up', i was in remote place had to get the car towed, i was 3 hours from home. it was very expensive and very stressful as i live alone.
i must be doing something right as the stress has not caused issues.
i am still doing food / poo diary. tracking food intake, medications, and any symptoms such as cramping, bloating etc, motion and my sleep patterns, and using this to help gauge what works and what doesnt
i figured out that potato gives me colic. I can have small amount at lunch time as long as i am active after. Cant have it at night.
GOOD LUCK
with patience and diligence you can control this demon! and as tex said... you will get your life back!
big hugs
take care
my symptoms and diagnosis timetable was similar to yours. it was a hellish few months.
my GI specialist handed me a heap of scripts 5 days before xmas and said see you in a month.
no additional information or support
I found this site 2 days later and it has been my saviour!
since then i have followed very strict Gluten Free diet, yeast Free and lactose free
now that the D has stopped (10 days D free woo hoo) as i start eating foods i can tell if it agrees with me or not.
I am saving up to do the comprehensive testing so i can have accurate results, for the time being listening and observing my bodies reactions to food (colic, bloating, pain, inflammation, headaches) has been an ok option
when i first joined Tex said to me I will get my life back - at the time i didnt believe it. I spend as much time as i can reading hte previous discussions on this site and every time i gain very valuable information
within 3 weeks of diagnosis i have gained reasonable control and now that the D is under control...today is the first time i have worn a light coloured skirt out of the house. I have spent the last 3 months only wearing black skirts and pants
I am also proud that the effort and time i have put into understanding this demon and learning how to manage it has helped me to cope with life. in the last week the clutch in car 'blew up', i was in remote place had to get the car towed, i was 3 hours from home. it was very expensive and very stressful as i live alone.
i must be doing something right as the stress has not caused issues.
i am still doing food / poo diary. tracking food intake, medications, and any symptoms such as cramping, bloating etc, motion and my sleep patterns, and using this to help gauge what works and what doesnt
i figured out that potato gives me colic. I can have small amount at lunch time as long as i am active after. Cant have it at night.
GOOD LUCK
with patience and diligence you can control this demon! and as tex said... you will get your life back!
big hugs
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