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Hi, I'm Maxine in Ontario, Canada and I am so glad I found this forum and to find people who are going through the same thing, the endless diarrhea, the pain, the desperation about what to eat. I could just cry with relief to know about you folks. I'm 59, was reasonably active, and have always eaten right - no junk, no colas, plenty of veggies, lots of home cooked healthy meals .... and I don't know what's hit me.
I don't formally have my diagnosis yet, but the GI nurse told me on the qt that MC (lymphocytic) is on my colonoscopy biopsy results. My GI guy hasn't told me yet as he isn't finished testing - I've a CT scan in a few days, then the big meeting on results. On the web I found descriptions of LC and I could be the poster girl for it.
It's possible I have had this in mild form for a while as I've always had a 'gyppy tummy' and also reflux. From what I've read, 2 things might have caused it to become so bad.
• Meds: In March/April I started on Prevacid for GERD, and it certainly helped the stomach; I stopped as soon as the other problems came along.
• Stress: In May, my beloved mum-in-law got very sick and went into hospital. We did shifts to sit with her which meant long hours, little sleep, and poor food at weird times. She passed away mid-May.
In late May I started to get sharp pain at the left hand side, gas, and after a week or two, loose BMs that got looser and looser and by late June it was constant diarrhea. The times I have to go increased and for the last few weeks it can be over 20 trips, many rushed. Sometimes I haven't made it and I've cried with pain, frustration, and embarrassment.
I've been working with a GI guy to figure it out, and I've had an endoscopy (confirmed gastritis) and colonoscopy (clean colon etc, but LC found in the biopsy). If the CT scan doesn't find anything wrong with gallbladder, pancreas etc, then it's just (!) LC.
My life is Imodium and sometimes Peptobismol. A good day is 3-5 times in the loo. I've gone down 2 dress sizes. God has quite the sense of humour: last year I was working out to trim down, moaning it was hard to lose those pesky pounds.
Diet seems key. I swear I'm worse with gluten products and dairy seems to be a nuisance. I always drank lactose free milk because of gas and bloating, so I wonder if I now have the casein problem. I've gone to real basics - porridge oats; plain chicken, turkey, or fish, potato, rice, sweet potato, zucchini, and I'm using rice flour. I've made some rice bread, and am experimenting with recipes from your forum and the celiac sites. On really bad 20+ days, it's BRAT with paediolyte/gatorade (yuck, and I think they make the d worse).
My mood is like a roller coaster and I swing from "at least it's not cancer" through "I can manage this" to "how do I live with it?" but I think I'm done with the weeping (until the next accident)!
Once my guy tells me officially it's LC, I can focus on working out the intolerances and getting stabilized and getting my life back
Plse pile on the advice, I need all the help I can get
Hello everyone, I've stopped lurking and joined
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
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barbaranoela
- Emperor Penguin
- Posts: 5394
- Joined: Wed May 25, 2005 6:11 pm
- Location: New York
to the family------and glad U stopped lurking~~~~ 
U will hear from others how they managed to get back on that *wellness* road---and sometimes *fall* off that road to discover something else that needed to be shoved back into the *cabinet* until U MIGHT be able to tolerate it--
I was MCC---and very lucky not to have suffered so severely as many here *have* and still do -- U will have some great postings --so grab ya -----
pull up a chair and get ready!!!A few little things from me---Pepto was no good for me--allergy to the bismuth--went thru other stuff but what helped me was COLAZAL---
Also had to do prednizone cus I was --like U practically living in the bathroom---lost weight too---
dreading to go out---checking where all the bathrooms were```and U know the routine----also making sure that my friend DEPEND was always hugging me~~~
Dont give up---grab a positive attitude--and watch the board *pop* with answers for your questions-
Barbara
the fruit of the spirit is love, joy, peace, patience, kindness, goodness, faithfulness and self-control
Welcome Maxine,
Sorry to hear you have been struggling. It's good that you are starting to address diet issues. Most of are gluten intolerant, plus casein and soy, and some other foods. It takes a while to sort it out. I don't hink you need to wait for a diagnosis - diet helpd many GI disorders.
I know the feeling of eating healthfully and then having this happen. I was very conscientious about my diet and now I am intolerant to many fruits and veggies . . . .life just isn't fair sometimes, is it? But the most important thing is that you start to feel better. You might want to be cautious with oats - many are intolerant.
Welcome aboard!
Mary Beth
Sorry to hear you have been struggling. It's good that you are starting to address diet issues. Most of are gluten intolerant, plus casein and soy, and some other foods. It takes a while to sort it out. I don't hink you need to wait for a diagnosis - diet helpd many GI disorders.
I know the feeling of eating healthfully and then having this happen. I was very conscientious about my diet and now I am intolerant to many fruits and veggies . . . .life just isn't fair sometimes, is it? But the most important thing is that you start to feel better. You might want to be cautious with oats - many are intolerant.
Welcome aboard!
Mary Beth
Maxine, we're glad you are here. Don't expect your doctor to think that diet plays any part in controlling MC. Almost all of us think otherwise.
I hope you read the latest post from Jodi. That should give you hope that you'll get your life back. It won't be easy but we're here with all the support you want or need.
DISCLAIMER: I am not a doctor and don't play one on TV.
LDN July 18, 2014
Joan
LDN July 18, 2014
Joan
Hi Maxine,
Welcome to our online family. I'm glad you decided to post.
PPIs have been shown to contribute to the development of MC, so you may be right about the Prevacid, and the extra stress that you experienced in May, might have influenced the development, also.
As Joan mentioned, don't be surprised if your doctor insists that diet has nothing to do with controlling the symptoms of this disease. That's what they're taught in medical school, so it will take a while to correct that little "glitch" in their training.
Don't throw those dresses away - once you get your diet fine-tuned, and your intestines have a chance to heal, your malabsorption problem will go away, and you'll begin to gain those pounds back. You're probably right about the foods that are causing problems. As Mary Beth mentioned, most of us are sensitive to gluten and casein, and about half of us are sensitive to soy. Also, fiber is a problem for most of us, until our intestines heal, so we have to minimize fiber - especially fruit and raw vegetables.
Some of us have to minimize sugar, until we heal - that might be why the Gatorade seems to make the D worse. Also, most of us have to avoid artificial sweeteners, at least while we are healing.
The "accidents" are the pits, of course, but most of us have experienced them, so we can certainly sympathize. They're what separate the IBDs from ordinary diarrhea, and they're what make this such a debilitating disease, by making us afraid to stray very far from our bathrooms.
Please feel free to ask anything that comes to mind, and again, welcome aboard.
Tex (Wayne)
Welcome to our online family. I'm glad you decided to post.
PPIs have been shown to contribute to the development of MC, so you may be right about the Prevacid, and the extra stress that you experienced in May, might have influenced the development, also.
As Joan mentioned, don't be surprised if your doctor insists that diet has nothing to do with controlling the symptoms of this disease. That's what they're taught in medical school, so it will take a while to correct that little "glitch" in their training.
Don't throw those dresses away - once you get your diet fine-tuned, and your intestines have a chance to heal, your malabsorption problem will go away, and you'll begin to gain those pounds back. You're probably right about the foods that are causing problems. As Mary Beth mentioned, most of us are sensitive to gluten and casein, and about half of us are sensitive to soy. Also, fiber is a problem for most of us, until our intestines heal, so we have to minimize fiber - especially fruit and raw vegetables.
Some of us have to minimize sugar, until we heal - that might be why the Gatorade seems to make the D worse. Also, most of us have to avoid artificial sweeteners, at least while we are healing.
The "accidents" are the pits, of course, but most of us have experienced them, so we can certainly sympathize. They're what separate the IBDs from ordinary diarrhea, and they're what make this such a debilitating disease, by making us afraid to stray very far from our bathrooms.
Please feel free to ask anything that comes to mind, 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.
Welcome to the family, Maxine.
You are right, the devastation you feel when this happens to you is amazing. It is a most humbling disease. Hopefully, you will soon see a decline in number of trips and especially in urgency. That urgency is extremely disturbing, I know.
You will find much info (keep on reading) and lots of help with questions on this site. It's a wonderful group of people.
Shirley
You are right, the devastation you feel when this happens to you is amazing. It is a most humbling disease. Hopefully, you will soon see a decline in number of trips and especially in urgency. That urgency is extremely disturbing, I know.
You will find much info (keep on reading) and lots of help with questions on this site. It's a wonderful group of people.
Shirley
When the eagles are silent, the parrots begin to jabber"
-- Winston Churchill
-- Winston Churchill
Thank you all for your warm welcome
Thank you all for your warm welcome. I do feel like I have come home. There's so much to learn about MC/LC and about my body's version of it.
A lot of my frustration and depression has been because of the medical side of things. My GI guy is a really nice guy but I don't know yet how much he knows about MC and where his biases lie - I'll find out soon so thanks for the tip on diet not being a focus item.
I was also upset that when my CT scan was booked, it was over 4 weeks away! for a woman going 20+ times to the loo?? Luckily the GI staff kept on top of it and got the appt moved up. It didn't seem to dawn on anyone that having so much D might not be pleasant and a sooner appt might be a good idea. I had the same thing happen at other tests - I'd have to rush off and they would give me heck about not sitting quietly in my seat, or not answering my number when called. One admin lady told me I should have gone before I left home. Sigh. On the other side of the coin, the staff who did the 'scopies were wonderful and caring. End of rant - had to get that off my chest.
Right now I would love some input on a few things:
• re the Imodium, is there a best way to use it, i.e. every time I have a bout of D, or every day at set times regardless of how I am? My GI guy says I can take up to 5 a day.
• what is best for a sore bum? vaseline doesn't do the job
• I love broccoli and brussel sprouts. I had to kiss the broc goodbye many weeks back as I had agonising gas from it. Will I be able to eat it one day? How are brussels in the scheme of things?
• What exactly does Entocort do? How does it help?
• I read Entocort might be contra-indicated for someone with cataracts. My last visit to the eye man, I was told I have cataracts started. Does anyone know more about what side effects might be?
• Will I ever have a normal bm again?
• Does anyone else get strange slopping water actions inside? They're like a lot of water sloshing about and they happen when I am not moving so it's not me causing it.
Thanks again, my new friends
A lot of my frustration and depression has been because of the medical side of things. My GI guy is a really nice guy but I don't know yet how much he knows about MC and where his biases lie - I'll find out soon so thanks for the tip on diet not being a focus item.
I was also upset that when my CT scan was booked, it was over 4 weeks away! for a woman going 20+ times to the loo?? Luckily the GI staff kept on top of it and got the appt moved up. It didn't seem to dawn on anyone that having so much D might not be pleasant and a sooner appt might be a good idea. I had the same thing happen at other tests - I'd have to rush off and they would give me heck about not sitting quietly in my seat, or not answering my number when called. One admin lady told me I should have gone before I left home. Sigh. On the other side of the coin, the staff who did the 'scopies were wonderful and caring. End of rant - had to get that off my chest.
Right now I would love some input on a few things:
• re the Imodium, is there a best way to use it, i.e. every time I have a bout of D, or every day at set times regardless of how I am? My GI guy says I can take up to 5 a day.
• what is best for a sore bum? vaseline doesn't do the job
• I love broccoli and brussel sprouts. I had to kiss the broc goodbye many weeks back as I had agonising gas from it. Will I be able to eat it one day? How are brussels in the scheme of things?
• What exactly does Entocort do? How does it help?
• I read Entocort might be contra-indicated for someone with cataracts. My last visit to the eye man, I was told I have cataracts started. Does anyone know more about what side effects might be?
• Will I ever have a normal bm again?
• Does anyone else get strange slopping water actions inside? They're like a lot of water sloshing about and they happen when I am not moving so it's not me causing it.
Thanks again, my new friends
Maxine
Welcome to the group Maxine.
There are a lot of experienced voices here for you do draw information from. Keep reading and asking questions. Many here have dietary intolerance issues of one kind or another.
Since you are newly diagnosed with MC/LC you will be on a learning curve for a while. And please believe me when I say – that learning curve will be on a continuum – not a sudden flash of total knowledge. There is so much to learn, as well as much that is not known, about this condition.
You will probably be prescribed a medication called Entecort. That is quite standard today. Entecort is technically a steroid, but its construction is such that it is not absorbed until it reaches the lower GI tract (which is the site of our problem). Its claim to fame therefore is that it is poorly absorbed systemically – and therefore does not cause the myriad of issues that the corticosteroids commonly cause.
The response to Entecort seems to vary person to person. I have been very fortunate that I respond fairly quickly, others seem to take longer. Don’t expect an immediate cessation of all symptoms. Rather a gradual change in the positive direction that may go up and down a bit, but progress toward resuming more normal bowel activity.
Since you are in Canada, your cost for this medication is quite reasonable :)) compared to what patients in the USA still must pay for this drug as it is still under Patent protection in the USA. :((
Rarely talked about here, but a factor in MC none the less, is the use of NSAIDS. (Non-Steroidal-Anti-Inflammatory Drugs.) You will best serve yourself if you refrain from using those products. Tylenol is allowed as it is a different product entirely. Studies have been done that do show a significant correlation between the heavy use of NSAIDS and MC. Believe this – and Eliminate NSAIDS from your life – at least for a while. This may be a factor for you, and may not be. Only time will tell. But this is the easiest of all the different kinds of correlates of this condition to quickly identify and eliminate.
MC is considered to be a relapsing – remitting type of condition. More about that later, but this good to keep in mind.
Best of luck to you on your journey with MC/LC. This group will be interested in hearing your progression and maybe offering some suggestions and support as you go along.
Cheers,
Gayle
There are a lot of experienced voices here for you do draw information from. Keep reading and asking questions. Many here have dietary intolerance issues of one kind or another.
Since you are newly diagnosed with MC/LC you will be on a learning curve for a while. And please believe me when I say – that learning curve will be on a continuum – not a sudden flash of total knowledge. There is so much to learn, as well as much that is not known, about this condition.
You will probably be prescribed a medication called Entecort. That is quite standard today. Entecort is technically a steroid, but its construction is such that it is not absorbed until it reaches the lower GI tract (which is the site of our problem). Its claim to fame therefore is that it is poorly absorbed systemically – and therefore does not cause the myriad of issues that the corticosteroids commonly cause.
The response to Entecort seems to vary person to person. I have been very fortunate that I respond fairly quickly, others seem to take longer. Don’t expect an immediate cessation of all symptoms. Rather a gradual change in the positive direction that may go up and down a bit, but progress toward resuming more normal bowel activity.
Since you are in Canada, your cost for this medication is quite reasonable :)) compared to what patients in the USA still must pay for this drug as it is still under Patent protection in the USA. :((
Rarely talked about here, but a factor in MC none the less, is the use of NSAIDS. (Non-Steroidal-Anti-Inflammatory Drugs.) You will best serve yourself if you refrain from using those products. Tylenol is allowed as it is a different product entirely. Studies have been done that do show a significant correlation between the heavy use of NSAIDS and MC. Believe this – and Eliminate NSAIDS from your life – at least for a while. This may be a factor for you, and may not be. Only time will tell. But this is the easiest of all the different kinds of correlates of this condition to quickly identify and eliminate.
MC is considered to be a relapsing – remitting type of condition. More about that later, but this good to keep in mind.
Best of luck to you on your journey with MC/LC. This group will be interested in hearing your progression and maybe offering some suggestions and support as you go along.
Cheers,
Gayle
Welcome to the forum. I joined about 3 months ago, and must say that it's the smartest thing I ever did, as far as controlling my symptoms. And the people here are so warm and caring that it really helped my mental outlook.
Many of those here have had a number of years of experience in dealing with MC, so I'm a relative newbie. But so are you, so maybe my early experience will give you some ideas. I don't know if you have read my story while "lurking", and you can search for posts by me to get more details. But in the Readers''s Digest Condensed version, I had serious diarrhea like yours for several months. Fortuitiously, I had scheduled a routine colonoscopy before all this started, so got diganosed fairly rapidly. Before I even knew I had MC, I had decided to stop all my herbal supplements and somehow that ended the flare within a few days. Most people here will tell you that it's highly unusual. In retrospect, about 5 years ago I had much milder symptoms, and traced it to a dairy intolerance, and was pretty much OK until this year. But again like you, my gut was always a bit "sensitive". After getting the diagnosis and finding this forum, I realized that my seeming "remission" probably wouldn't last if I was gluten sensitive. Tex told me right away that he would be very suprised if I wasn't gluten sensitive since I already knew I was dairy sensitive, it usually tracks along with gluten sensitivity, and most people with MC also have gluten sensitivities. So I decided to get tested at Enterolab. You've probably heard a lot about Enterolab, which does stool test for a number of food sensitivities, like gluten, dairy (casein), soy, eggs and yeast. Lots of forum members have been tested there. It takes about 2-3 weeks to get results, and I decided to go gluten free while waiting for the results. When I went gluten free, a number of other health problems improved. My gut got less rumbly, I had more energy, my leg cramps got much less bothersome, and most amazingly, my asthma dramatically improved. So it was no suprise when my Enterolab test came back positive for gluten sensitivity.
So now I have been gluten-free for several months. Many board members will testify that when they went gluten free, their symptoms initially improved, but then got worse again due to other food sensitivites being unmasked once the main offender gluten was removed. I have been experiencing that, and suspect that like many Forum members I'm also sensitive to something else. It's nothing like the bad diarrhea I've had before, just some looser and more frequent stools and more gurgling. So I am getting tested by Enterolab for soy, egg and yeast sensitivities. Once I get the results back, I'll fine-tune my diet to get better control.
You asked about Imodium. When I was at my worst, taking a couple of Imodium half an hour before going out of the house helped control the D for several hours. So I would mostly use it on those occasions because if I used it all the time, it would lose it's effectiveness and I wanted to be able to feel more secure about doing activities outside the house. You know how that goes...... Now that I'm doing better, I'll occasionally use it if I'm going on a long car or plane ride just for "security".
My GI doctor wanted to prescribe a course of Enterocort when I got my diagnosis, but by then I was already doing better just with my diet and never went on it. Other forum members have had experience wtih that drug, so I'll let them tell you about it.
I hope you are able to get a handle on your problems and start improving. There are lots of things to try, so be hopeful that like many of us you will start the healing process.
Rosie
Many of those here have had a number of years of experience in dealing with MC, so I'm a relative newbie. But so are you, so maybe my early experience will give you some ideas. I don't know if you have read my story while "lurking", and you can search for posts by me to get more details. But in the Readers''s Digest Condensed version, I had serious diarrhea like yours for several months. Fortuitiously, I had scheduled a routine colonoscopy before all this started, so got diganosed fairly rapidly. Before I even knew I had MC, I had decided to stop all my herbal supplements and somehow that ended the flare within a few days. Most people here will tell you that it's highly unusual. In retrospect, about 5 years ago I had much milder symptoms, and traced it to a dairy intolerance, and was pretty much OK until this year. But again like you, my gut was always a bit "sensitive". After getting the diagnosis and finding this forum, I realized that my seeming "remission" probably wouldn't last if I was gluten sensitive. Tex told me right away that he would be very suprised if I wasn't gluten sensitive since I already knew I was dairy sensitive, it usually tracks along with gluten sensitivity, and most people with MC also have gluten sensitivities. So I decided to get tested at Enterolab. You've probably heard a lot about Enterolab, which does stool test for a number of food sensitivities, like gluten, dairy (casein), soy, eggs and yeast. Lots of forum members have been tested there. It takes about 2-3 weeks to get results, and I decided to go gluten free while waiting for the results. When I went gluten free, a number of other health problems improved. My gut got less rumbly, I had more energy, my leg cramps got much less bothersome, and most amazingly, my asthma dramatically improved. So it was no suprise when my Enterolab test came back positive for gluten sensitivity.
So now I have been gluten-free for several months. Many board members will testify that when they went gluten free, their symptoms initially improved, but then got worse again due to other food sensitivites being unmasked once the main offender gluten was removed. I have been experiencing that, and suspect that like many Forum members I'm also sensitive to something else. It's nothing like the bad diarrhea I've had before, just some looser and more frequent stools and more gurgling. So I am getting tested by Enterolab for soy, egg and yeast sensitivities. Once I get the results back, I'll fine-tune my diet to get better control.
You asked about Imodium. When I was at my worst, taking a couple of Imodium half an hour before going out of the house helped control the D for several hours. So I would mostly use it on those occasions because if I used it all the time, it would lose it's effectiveness and I wanted to be able to feel more secure about doing activities outside the house. You know how that goes...... Now that I'm doing better, I'll occasionally use it if I'm going on a long car or plane ride just for "security".
My GI doctor wanted to prescribe a course of Enterocort when I got my diagnosis, but by then I was already doing better just with my diet and never went on it. Other forum members have had experience wtih that drug, so I'll let them tell you about it.
I hope you are able to get a handle on your problems and start improving. There are lots of things to try, so be hopeful that like many of us you will start the healing process.
Rosie
Our greatest weakness lies in giving up. The most certain way to succeed is always to try just one more time………Thomas Edison
Thanks!
I had read about NSAIDs and took them off the ok list immediately and went and bought Tylenol so it's there if needed. I haven't been a big user of NSAIDs so I don't think they've contributed to my MC. I am amazed they are a no-no. I thought all pan-killers were the same.
The diet changes I've made in the last months have helped but not done away with the D so I may end up with prescription drugs. It's my hope, though, that in time I can fine tune my diet so I'm not reliant on drugs. It seems a common thread that finding and dealing with one intolerance is followed by another raising its head so I realise now that it'll take time to nail them all down, if that's ever possible.
I miss bread! Sometimes I stand at the bakery window peering in, looking at all the breads, sniffing the aroma - I feel like an urchin outside the candy store.
One thing I didn't mention earlier is that I do have a supportive partner who's been really good about the impact on his life e.g. 2 vacations cancelled. He's also been splendid about being experimented on with meals and ingredients, and when he cooks, he really thinks about what to prepare. Never complains.
I had read about NSAIDs and took them off the ok list immediately and went and bought Tylenol so it's there if needed. I haven't been a big user of NSAIDs so I don't think they've contributed to my MC. I am amazed they are a no-no. I thought all pan-killers were the same.
The diet changes I've made in the last months have helped but not done away with the D so I may end up with prescription drugs. It's my hope, though, that in time I can fine tune my diet so I'm not reliant on drugs. It seems a common thread that finding and dealing with one intolerance is followed by another raising its head so I realise now that it'll take time to nail them all down, if that's ever possible.
I miss bread! Sometimes I stand at the bakery window peering in, looking at all the breads, sniffing the aroma - I feel like an urchin outside the candy store.
One thing I didn't mention earlier is that I do have a supportive partner who's been really good about the impact on his life e.g. 2 vacations cancelled. He's also been splendid about being experimented on with meals and ingredients, and when he cooks, he really thinks about what to prepare. Never complains.
Maxine
Maxine....
to the forum...
Im sorry you have had to go through all of that but now hopefully you will get a correct diagnosis and hopefully start the road to recovery.
Firstly you have come to the right place everyone here has been there got the t shirt...as sufferers of mc etc..We are all here for you to help you understand this dibiletating condition.
I was the same never ate junk food and was a vegetarian. I never put junk into my colon i was always fussy what i ate..For years i had a problem eating certain foods but shrugged ot off as indigestion...I agree that meds could be a trigger....I have taken cocoodamol for 20 yrs for migraine...I cant prove it but i think its been a trigger.
Im sorry to hear you lost your dear mum...i know the feeling...
I decided to stop eating gluten foods cos i was convinced i was celiac, my test didnt come back as celic but as collagenous colitis...Even before the colonoscopy i stopped eating loads 8 months previous to the procedure. By the time they took me in I had got myself better by change of diet....i mean a massive change,,,it hit me like a ton of bricks..I was starving all the time...and yes the same as you i use the brat diet..
Amazing results just by diet alone although i still get flare ups because its kind of like 2 conditions here....gluten on one hand and colitis on the other...theres even some gf foods that can still give me a flare up...and yes 2 yrs down the line im still struggling with eating practicallly stick to what know doesnt hurt!!
I hope you get a good gi doc and he has a good knowlege base of the subject because i have to say not one medical person has got me to where i am now...Okay so they prescribed me mesalazine...but now its went from 3000mg daily to 1000mg daily....and for the past 4 months i have hardly taken it only when i get a flare...i put that down to diet...i dont care what the docs say...
joan said in her thread about docs and their opinion with diet and mc. She is absolutely right because my doc said diet is not an issue, but hell ye it is ..also my doc didnt know enough about mc he said i was the 2nd patient he had dealt with in 2 yrs...scary huh...
The mood issue is the same i get really depresed and theres days i dont want to get out of bed...i get a lot of mood swings too and im major agitated when i get a flare...
Stick with your plan with diet believe me your going to see a huge improvement there...Check out Dees kitchen here....wonderful recipes...dees a saint to all of us....as i said before i wish i lived with dee....id be about 20 stone lol!!!
I wish you all the best with your gi appointments. Please let us know how it goes...sometimes im not on the board due to my ps issues but i will hopefully be more often now...
to the forum...
Im sorry you have had to go through all of that but now hopefully you will get a correct diagnosis and hopefully start the road to recovery.
Firstly you have come to the right place everyone here has been there got the t shirt...as sufferers of mc etc..We are all here for you to help you understand this dibiletating condition.
I was the same never ate junk food and was a vegetarian. I never put junk into my colon i was always fussy what i ate..For years i had a problem eating certain foods but shrugged ot off as indigestion...I agree that meds could be a trigger....I have taken cocoodamol for 20 yrs for migraine...I cant prove it but i think its been a trigger.
Im sorry to hear you lost your dear mum...i know the feeling...
God thats the same way it started with me. I was 9st 7 and went down to 8 stone in 8 weeks. I was off work that whole time waiting for a colonoscopy which took them 8 monthsIn late May I started to get sharp pain at the left hand side, gas, and after a week or two, loose BMs that got looser and looser and by late June it was constant diarrhea. The times I have to go increased and for the last few weeks it can be over 20 trips, many rushed. Sometimes I haven't made it and I've cried with pain, frustration, and embarrassment.
I decided to stop eating gluten foods cos i was convinced i was celiac, my test didnt come back as celic but as collagenous colitis...Even before the colonoscopy i stopped eating loads 8 months previous to the procedure. By the time they took me in I had got myself better by change of diet....i mean a massive change,,,it hit me like a ton of bricks..I was starving all the time...and yes the same as you i use the brat diet..
Amazing results just by diet alone although i still get flare ups because its kind of like 2 conditions here....gluten on one hand and colitis on the other...theres even some gf foods that can still give me a flare up...and yes 2 yrs down the line im still struggling with eating practicallly stick to what know doesnt hurt!!
I hope you get a good gi doc and he has a good knowlege base of the subject because i have to say not one medical person has got me to where i am now...Okay so they prescribed me mesalazine...but now its went from 3000mg daily to 1000mg daily....and for the past 4 months i have hardly taken it only when i get a flare...i put that down to diet...i dont care what the docs say...
joan said in her thread about docs and their opinion with diet and mc. She is absolutely right because my doc said diet is not an issue, but hell ye it is ..also my doc didnt know enough about mc he said i was the 2nd patient he had dealt with in 2 yrs...scary huh...
The mood issue is the same i get really depresed and theres days i dont want to get out of bed...i get a lot of mood swings too and im major agitated when i get a flare...
Stick with your plan with diet believe me your going to see a huge improvement there...Check out Dees kitchen here....wonderful recipes...dees a saint to all of us....as i said before i wish i lived with dee....id be about 20 stone lol!!!
I wish you all the best with your gi appointments. Please let us know how it goes...sometimes im not on the board due to my ps issues but i will hopefully be more often now...
Angy ;)
Maxine,
Wow! You've already received some great responses, but I guess I'll add my thoughts on your questions, FWIW.
The apparent lack of compassion displayed by many doctors, regarding the nonchalant attitude that they seem to have, concerning the scheduling of tests, and the failure to expedite completing a diagnosis, is related to the fact that many/most GI docs seem to regard MC as "just a little diarrhea", and in fact, some of our members here have been told exactly that, by their GI doc. IOW, if you don't have cancer, they don't see any need for urgency. That's why I've long maintained that every candidate seeking a certification in the specialty of GI medicine, should have to spend at least several months of his or her life, dealing with their own case of artificially-induced microscopic colitis, before receiving their specialist's certification. I can guarantee that such a requirement would totally change the attitude, (and the working knowledge about the disease), of the field of GI medicine, in general. As it is, they don't give a hoot, because then don't understand the disease, and if the GI docs don't understand it, there's no reason to expect any other medical professionals to understand it, either.
1. I've never used it, but maybe some members who have used it will offer their suggestions. I get the impression that most people use it as needed, or when they need extra "protection", because of an up-coming important meeting, or a trip, etc., where they might not have prompt access to a bathroom. It's a pretty safe med.
2. The most effective products seem to be based on zinc oxide. Here's a discussion that contains some suggestions:
http://www.perskyfarms.com/phpBB2/viewt ... zinc+oxide
3. I never stopped eating broccoli while I was recovering, but some people seem to have worse gas problems than others, so everyone has to make their own decisions on eating foods such as this. Yes, after your intestines have healed, you will be able to eat broccoli again, but remember that it causes gas for everyone, regardless of whether or not MC is an issue - it's just much more troublesome, when you have uncontrollable D, along with it. I've never been a brussel sprouts fan, so I haven't had any experience with them. With most veggies, and especially fruits, it's the fiber content that's the main problem, though sugar alcohol content, (such as sorbitol), and fructose content can be a problem, also, (mainly with the fruits).
4. Expanding on what Gayle said about Entocort - basically, Entocort helps to suppress inflammation. Technically, the mechanism by which the active ingredient in Entocort EC, (budesonide), works to suppress inflammation, is unknown. It's virtually as effective as prednisone, for most IBDs, but as she pointed out, it carries only a fraction of the risk of serious side effects, when compared with the other corticosteroids, due to the fact that Entocort EC is encapsulated, (the budesonide is enterically-coated, IOW), so that it does not become activated until it reaches the lower third of the small intestine, and the colon. Because of the delayed release, only about 10 to 15 % of it is absorbed into the bloodstream, thus minimizing the systemic side effects. Note that contrary to the opinion of most GI docs, none of the corticosteroids, (including Entocort), will control the inflammation of an IBD 100%, but they will often suppress inflammation well enough that remission of symptoms can be achieved. Some members here are able to achieve remission with Entocort while eating whatever they please, while others find it necessary to exclude all offending food triggers from their diets, in order to acquire remission, even while taking a full dose of Entocort. We are all different in our sensitivities, and in the way we react to drugs, and/or diet changes.
When taken concurrently with diet changes, Entocort will help to bring remission much sooner than diet alone, because it it can help to suppress inflammation even before the intestines have time to heal from the damage caused by an IBD. Remission from diet changes alone, typically takes 6 to 12 months, (though some see results much sooner, and some take longer). In combination with Entocort, improvement can often be noticed in 2 to 4 weeks, (more or less), and after the gut has had sufficient time to heal, (usually 6 months to a year), the Entocort dosage can be tapered down, and eventually discontinued altogether, (provided that all food and drug intolerances have been removed from the diet, and the diet is faithfully continued).
5. Cataracts are a pretty common problem for those of us with eye injuries, or a fair number of years under our belts. I have some myself, due to old eye injuries caused by metal grinding fragments that had to be "surgically" removed, decades ago. The thing to keep in mind is that the warnings that you see in the literature, treat Entocort, (budesonide), as if it has basically the same risks as the other glucocorticosteroids, and that simply is not true. A risk still exists, of course, but it is only a fraction of the risk associated with the other glucocorticosteroids. Frankly, I doubt that you would be likely to notice any significant acceleration in the development of cataracts, after taking Entocort, unless, of course, you happen to be extremely sensitive to budesonide. If you are sensitive to it, however, you will soon notice, (within a few days), obvious neurological signs, such as blurred vision, balance issues, vertigo, etc., and if those signs should develop, then promptly discontinuing the drug should allow the symptoms to fade away, as the budesonide is eliminated from the body. Budesonide has a very short half-life, and it's probably the least persistent corticosteroid on the market.
6. Yes, with any luck at all, you'll be back to whatever pattern was normal for you, individually, after you get your symptoms under control, and your gut has some time to heal.
7. Yep, that's a very common symptom with MC. I can remember wondering how that could happen - it was almost as if someone pulled a plug, somewhere, and allowed a batch of liquid to drain to another level. Most of us have also experienced loud gurgling sounds that can be heard across a room, (sometimes to our embarrassment). Sometimes, during a reaction, my gut would writhe around like a snake, (you could see the "embossed" pressure lines on my abdomen, as it shifted around). Others have reported similar effects, also.
You're most welcome,
Tex
Wow! You've already received some great responses, but I guess I'll add my thoughts on your questions, FWIW.
The apparent lack of compassion displayed by many doctors, regarding the nonchalant attitude that they seem to have, concerning the scheduling of tests, and the failure to expedite completing a diagnosis, is related to the fact that many/most GI docs seem to regard MC as "just a little diarrhea", and in fact, some of our members here have been told exactly that, by their GI doc. IOW, if you don't have cancer, they don't see any need for urgency. That's why I've long maintained that every candidate seeking a certification in the specialty of GI medicine, should have to spend at least several months of his or her life, dealing with their own case of artificially-induced microscopic colitis, before receiving their specialist's certification. I can guarantee that such a requirement would totally change the attitude, (and the working knowledge about the disease), of the field of GI medicine, in general. As it is, they don't give a hoot, because then don't understand the disease, and if the GI docs don't understand it, there's no reason to expect any other medical professionals to understand it, either.
Maxine wrote:• re the Imodium, is there a best way to use it, i.e. every time I have a bout of D, or every day at set times regardless of how I am? My GI guy says I can take up to 5 a day.
• what is best for a sore bum? vaseline doesn't do the job
• I love broccoli and brussel sprouts. I had to kiss the broc goodbye many weeks back as I had agonising gas from it. Will I be able to eat it one day? How are brussels in the scheme of things?
• What exactly does Entocort do? How does it help?
• I read Entocort might be contra-indicated for someone with cataracts. My last visit to the eye man, I was told I have cataracts started. Does anyone know more about what side effects might be?
• Will I ever have a normal bm again?
• Does anyone else get strange slopping water actions inside? They're like a lot of water sloshing about and they happen when I am not moving so it's not me causing it.
1. I've never used it, but maybe some members who have used it will offer their suggestions. I get the impression that most people use it as needed, or when they need extra "protection", because of an up-coming important meeting, or a trip, etc., where they might not have prompt access to a bathroom. It's a pretty safe med.
2. The most effective products seem to be based on zinc oxide. Here's a discussion that contains some suggestions:
http://www.perskyfarms.com/phpBB2/viewt ... zinc+oxide
3. I never stopped eating broccoli while I was recovering, but some people seem to have worse gas problems than others, so everyone has to make their own decisions on eating foods such as this. Yes, after your intestines have healed, you will be able to eat broccoli again, but remember that it causes gas for everyone, regardless of whether or not MC is an issue - it's just much more troublesome, when you have uncontrollable D, along with it. I've never been a brussel sprouts fan, so I haven't had any experience with them. With most veggies, and especially fruits, it's the fiber content that's the main problem, though sugar alcohol content, (such as sorbitol), and fructose content can be a problem, also, (mainly with the fruits).
4. Expanding on what Gayle said about Entocort - basically, Entocort helps to suppress inflammation. Technically, the mechanism by which the active ingredient in Entocort EC, (budesonide), works to suppress inflammation, is unknown. It's virtually as effective as prednisone, for most IBDs, but as she pointed out, it carries only a fraction of the risk of serious side effects, when compared with the other corticosteroids, due to the fact that Entocort EC is encapsulated, (the budesonide is enterically-coated, IOW), so that it does not become activated until it reaches the lower third of the small intestine, and the colon. Because of the delayed release, only about 10 to 15 % of it is absorbed into the bloodstream, thus minimizing the systemic side effects. Note that contrary to the opinion of most GI docs, none of the corticosteroids, (including Entocort), will control the inflammation of an IBD 100%, but they will often suppress inflammation well enough that remission of symptoms can be achieved. Some members here are able to achieve remission with Entocort while eating whatever they please, while others find it necessary to exclude all offending food triggers from their diets, in order to acquire remission, even while taking a full dose of Entocort. We are all different in our sensitivities, and in the way we react to drugs, and/or diet changes.
When taken concurrently with diet changes, Entocort will help to bring remission much sooner than diet alone, because it it can help to suppress inflammation even before the intestines have time to heal from the damage caused by an IBD. Remission from diet changes alone, typically takes 6 to 12 months, (though some see results much sooner, and some take longer). In combination with Entocort, improvement can often be noticed in 2 to 4 weeks, (more or less), and after the gut has had sufficient time to heal, (usually 6 months to a year), the Entocort dosage can be tapered down, and eventually discontinued altogether, (provided that all food and drug intolerances have been removed from the diet, and the diet is faithfully continued).
5. Cataracts are a pretty common problem for those of us with eye injuries, or a fair number of years under our belts. I have some myself, due to old eye injuries caused by metal grinding fragments that had to be "surgically" removed, decades ago. The thing to keep in mind is that the warnings that you see in the literature, treat Entocort, (budesonide), as if it has basically the same risks as the other glucocorticosteroids, and that simply is not true. A risk still exists, of course, but it is only a fraction of the risk associated with the other glucocorticosteroids. Frankly, I doubt that you would be likely to notice any significant acceleration in the development of cataracts, after taking Entocort, unless, of course, you happen to be extremely sensitive to budesonide. If you are sensitive to it, however, you will soon notice, (within a few days), obvious neurological signs, such as blurred vision, balance issues, vertigo, etc., and if those signs should develop, then promptly discontinuing the drug should allow the symptoms to fade away, as the budesonide is eliminated from the body. Budesonide has a very short half-life, and it's probably the least persistent corticosteroid on the market.
6. Yes, with any luck at all, you'll be back to whatever pattern was normal for you, individually, after you get your symptoms under control, and your gut has some time to heal.
7. Yep, that's a very common symptom with MC. I can remember wondering how that could happen - it was almost as if someone pulled a plug, somewhere, and allowed a batch of liquid to drain to another level.
Most of us have also experienced loud gurgling sounds that can be heard across a room, (sometimes to our embarrassment). Sometimes, during a reaction, my gut would writhe around like a snake, (you could see the "embossed" pressure lines on my abdomen, as it shifted around). Others have reported similar effects, also.You're most welcome,
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.
Hi Again Maxine,
Ooopps…mis-spelled Entocort all the way through that last post.
Mea-culpa!
What I would add about taking Entocort is this --- if that is what is prescribed, HOW YOU TAKE IT IS IMPORTANT. ---- Very important!
Entocort should be taken at pretty close to the same time every day. i.e.) One dose at 9:00A.M. am should NOT be followed the next day at 7:00A.M. Take at the same time -- AND -- I’ve found the best and quickest results by taking my Entocort first thing in the morning, with water. Then, waiting to ingest food for a ½ hour or so. Sipping your morning coffee while reading the paper is OK though.
It just does seem to be desirable to allow this medication a head start down the drain all by itself toward where it does its thing.
And -- If something happens and you are a couple hours late with a dose, but want to get back to that earlier time, you should work yourself back by 15 or 20 minute intervals until you get back to the desirable dose time.
Following these simple guidelines with that drug will improve your chances of a good outcome.
As to the potential for causing cataracts -- There is always that precaution issued with all of the corticosteroids – that’s routine Pharma/Legal talk. This has been observed, but at what dosages, for what length of time, for what conditions -- are being aluded to – none of that is known with this kind of blanket warning.
If you already have evidence of formation of cataracts, then this corticosteroid is not going to cause cataracts (you already have them). Most (not all) cataracts are age related. I would not refuse to try to use a medication that has the potential to give a lot of help controlling the effects of the MC because of this situation. Your cataracts will continue to develop with, or without this drug. Talk this over with your Eye Doc, making ssure that person understand the profile of Entocort. Most Doc's know this drug, it is also commonly used for some pulmonary conditions.
Without meaning to sound cavalier about cataract removal surgery, (When it is our eyes – WE ARE CONCERNED!! YOU--BET!!) But the cataract removal procedure today is one of the great achievements of modern medicine
, and IMHO, should not be avoided or feared.
Best,
Gayle
Ooopps…mis-spelled Entocort all the way through that last post.
Mea-culpa!What I would add about taking Entocort is this --- if that is what is prescribed, HOW YOU TAKE IT IS IMPORTANT. ---- Very important!
Entocort should be taken at pretty close to the same time every day. i.e.) One dose at 9:00A.M. am should NOT be followed the next day at 7:00A.M. Take at the same time -- AND -- I’ve found the best and quickest results by taking my Entocort first thing in the morning, with water. Then, waiting to ingest food for a ½ hour or so. Sipping your morning coffee while reading the paper is OK though.
It just does seem to be desirable to allow this medication a head start down the drain all by itself toward where it does its thing.
And -- If something happens and you are a couple hours late with a dose, but want to get back to that earlier time, you should work yourself back by 15 or 20 minute intervals until you get back to the desirable dose time.
Following these simple guidelines with that drug will improve your chances of a good outcome.
As to the potential for causing cataracts -- There is always that precaution issued with all of the corticosteroids – that’s routine Pharma/Legal talk. This has been observed, but at what dosages, for what length of time, for what conditions -- are being aluded to – none of that is known with this kind of blanket warning.
If you already have evidence of formation of cataracts, then this corticosteroid is not going to cause cataracts (you already have them). Most (not all) cataracts are age related. I would not refuse to try to use a medication that has the potential to give a lot of help controlling the effects of the MC because of this situation. Your cataracts will continue to develop with, or without this drug. Talk this over with your Eye Doc, making ssure that person understand the profile of Entocort. Most Doc's know this drug, it is also commonly used for some pulmonary conditions.
Without meaning to sound cavalier about cataract removal surgery, (When it is our eyes – WE ARE CONCERNED!! YOU--BET!!) But the cataract removal procedure today is one of the great achievements of modern medicine
, and IMHO, should not be avoided or feared. Best,
Gayle
Hi Maxine,
Glad you have found us - sorry for the reason. In my most humble opinion Entocort should be used only while getting your diet under control. It will not cure you. For me sugars made my gut gurgle and rumble and I had horrible gas. I guess I passed gas at least every 5 minutes and had the pains also. As soon as I gave up sugars and I mean all sugars including fruit and the vegetables that have a lot of sugar in them the gas, pain and gurgling went away. A bonus was that most of my muscle aches went away. I still had the D. It's taken me almost 3 years to be able to give up all the foods I have given up ( I was stubborn and thought a pill would cure me and I have taken many. I wish I had listened and had the courage to give up all the foods sooner) I now stay away from gluten, dairy, soy, all fruits and most vegetables (also legumes). Sigh, I miss fruit but I am so much better that I just cannot do that to myself. I have fallen off the wagon many times only to experience the pain, gas, and gurgling again. When I first had this and didn't know what it was I tried to be the healthiest person on the planet and eat all the foods that would make me healthy - fruits and vegetables. I was just making myself sicker. I hope that is not what you have to do. I pray that you only have to give up maybe gluten and maybe dairy like some of the others. There are many substitutes for gluten. Some have had to give up the fruits and vegetables at first and been able to resume eating some after a period of time. I hope that happens for me. I pray that happens for me. I am not having normal BMs yet and I will probably have to give up something else but for right now I am doing so much better! No pain, gas, gurgling, aches and only have 1-4 very soft BM's a day and much much less urgency and NO ACCIDENTS! Yeah!
When Imodium still worked for me I took it like clock work 4 times a day and it really helped. But I was eating everything and I would still have accidents. It doesn't work anymore - that happened when GI #2 gave me Neomycin, an antibiotic. It made me much worse and I haven't been quite the same since. So my advice there is not take any antibiotic unless they have tested you and you have some bacterial infection.
Hope this helps you.
Pat
Glad you have found us - sorry for the reason. In my most humble opinion Entocort should be used only while getting your diet under control. It will not cure you. For me sugars made my gut gurgle and rumble and I had horrible gas. I guess I passed gas at least every 5 minutes and had the pains also. As soon as I gave up sugars and I mean all sugars including fruit and the vegetables that have a lot of sugar in them the gas, pain and gurgling went away. A bonus was that most of my muscle aches went away. I still had the D. It's taken me almost 3 years to be able to give up all the foods I have given up ( I was stubborn and thought a pill would cure me and I have taken many. I wish I had listened and had the courage to give up all the foods sooner) I now stay away from gluten, dairy, soy, all fruits and most vegetables (also legumes). Sigh, I miss fruit but I am so much better that I just cannot do that to myself. I have fallen off the wagon many times only to experience the pain, gas, and gurgling again. When I first had this and didn't know what it was I tried to be the healthiest person on the planet and eat all the foods that would make me healthy - fruits and vegetables. I was just making myself sicker. I hope that is not what you have to do. I pray that you only have to give up maybe gluten and maybe dairy like some of the others. There are many substitutes for gluten. Some have had to give up the fruits and vegetables at first and been able to resume eating some after a period of time. I hope that happens for me. I pray that happens for me. I am not having normal BMs yet and I will probably have to give up something else but for right now I am doing so much better! No pain, gas, gurgling, aches and only have 1-4 very soft BM's a day and much much less urgency and NO ACCIDENTS! Yeah!
When Imodium still worked for me I took it like clock work 4 times a day and it really helped. But I was eating everything and I would still have accidents. It doesn't work anymore - that happened when GI #2 gave me Neomycin, an antibiotic. It made me much worse and I haven't been quite the same since. So my advice there is not take any antibiotic unless they have tested you and you have some bacterial infection.
Hope this helps you.
Pat
Hi Maxine,
I noticed in your post you are eating oats. There are a lot of concerns that oats are heavily contaminated with wheat, and hence gluten. There are also some similar proteins in oats and wheat, and some people will react to them in exactly the same way. You might want to consider swapping to millet or rice porridge instead.
Are you using regular Imodium or Imodium advanced? I found regular Imodium always made things worse for me. Since it contains lactose that is hardly surprising. Imodium Advanced is free from gluten and lactose so works better.
You don't mention if you are using any seasonings, sauces etc with your food. It is surprising how many hidden sources of gluten and dairy there are, sometimes not even on the label.
Medications and supplements like vitamins can also contain problem ingredients. If it doesn't say 'gluten and dairy free' on the label, check with the manufacturer.
Good luck finding your way to health. Hopefully we can help on that journey.
Lyn
I noticed in your post you are eating oats. There are a lot of concerns that oats are heavily contaminated with wheat, and hence gluten. There are also some similar proteins in oats and wheat, and some people will react to them in exactly the same way. You might want to consider swapping to millet or rice porridge instead.
Are you using regular Imodium or Imodium advanced? I found regular Imodium always made things worse for me. Since it contains lactose that is hardly surprising. Imodium Advanced is free from gluten and lactose so works better.
You don't mention if you are using any seasonings, sauces etc with your food. It is surprising how many hidden sources of gluten and dairy there are, sometimes not even on the label.
Medications and supplements like vitamins can also contain problem ingredients. If it doesn't say 'gluten and dairy free' on the label, check with the manufacturer.
Good luck finding your way to health. Hopefully we can help on that journey.
Lyn