So I was just diagnosed with microscopic colitis this week (after 6+ months of intense agony). Originally my GI doctor told me it was not possible that I had MC due to my age. But after an ultrasound, CT scan, colonoscopy, and 2 trips to the ER due to intense pain, he finally decided that it might be worth checking in to. My husband and I had researched and decided that MC was the most probably culprit for my issues. I cut out gluten and weaned myself off of my Lexapro (husband is a pharmacist and after doing research he learned that gluten and SSRIs can cause issues with MC). I am now on entocort per the GI doctor's instructions (also on a gluten free diet and I have quit the SSRI). I have not met with my doctor to discuss my diagnosis, he basically threw the medicine at me and told me he'd see me in 3 weeks. I have a million questions and a doctor who doesn't want to deal with me.
I experienced excruciating pain during my flare up. I even went to the ER twice, I have never been to the ER before. I could not begin to describe the cramping and pain. It was awful. No one could give me any answers about why I was in so much pain other than it couldn't possibly be the MC. As soon as I cut out gluten and the SSRI, the pain basically disappeared. I still have uncomfortable twinges but it's no where near as bad as the 10 out of 10 pain I was experiencing. Has anyone else dealt with this kind of pain? I'm still working my way through all of the boards. Thankfully there is a lot of information on this site.
Is this something I will deal with forever? What are the best ways to avoid another flare up? Along those lines, how do I know when this flare up is over? Do I just take my entocort for the long term and hope the flare up is done when I run out of meds?
Does MC cause permanent damage to the colon? There seems to be a few different opinions on this out there.
Will I have to give up gluten permanently? Or once I heal from this flare will I be able to eat it again?
Can I continue with anti depressants as long as they aren't in the SSRI category?
Ugh, so many questions. Why does my GI doctor just want to write me off and not answer any of these? I feel hopelessly overwhelmed and lost!
Brand new
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Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Welcome to our group - sympathies that you had to find us
not many GI or PCP's are knowledgeable in MC, and this also applies in other countries (I am in Australia)
Read the posts / forum areas aimed at newbies.. the flow on discussions in these areas may answer some of your questions
I will answer your initial questions
Remission can be fragile, an event such as a death in the family can cause a major flare for someone who has been in remission for years.
the harsh sad reality in MC world is that there is no one guaranteed solution that works for all.
there are some that struggle to get any of the various medication protocols to work. there are others that despite super strict eating plan, do not get full wellness.
For the majority - i would estimate over 75%, once you get the right eating plan, lifestyle plan, medication plan etc etc wellness is attained and easish to maintain
this also affects nutrient/mineral absorption which has long term impact on wellness of the whole body.
As we age, the harder it is is to heal. Depending on medical history and length of time with symptoms, it can take 6-12 months for good quality healing for scenerio like yours.
When you have some reading time, we will share the articles about why gluten is such an issue to your digestion. in the forms we are ingesting today it is highly inflammatory and not digested properly.
With MC 'alive and active' what works for most people is well cooked, low inflammation, low fibre meals.
Keep in mind that many people here have had to give up more than just gluten permanently. (90% or more have multiple intolerance) start preparing yourself that it may take giving up things like Dairy, Eggs, Soy to attain good remission.
there are quite a few 'MC safe' anti depressants. again there is not one definite one that works for all. Each of us are different, (the sucky part of MC world) if you do a search you will see the numerous discussions on this.
Hope this helps! happy reading and happy healing
not many GI or PCP's are knowledgeable in MC, and this also applies in other countries (I am in Australia)
Read the posts / forum areas aimed at newbies.. the flow on discussions in these areas may answer some of your questions
I will answer your initial questions
Technically, yes, MC is for life. In saying that majority of people with the right MC management plan can get into remission and live life with minimal symptomsIs this something I will deal with forever?
Remission can be fragile, an event such as a death in the family can cause a major flare for someone who has been in remission for years.
The best way to avoid flare up is to figure out your MC Management plan, and stick to it!What are the best ways to avoid another flare up? Along those lines, how do I know when this flare up is over? Do I just take my entocort for the long term and hope the flare up is done when I run out of meds?
the harsh sad reality in MC world is that there is no one guaranteed solution that works for all.
there are some that struggle to get any of the various medication protocols to work. there are others that despite super strict eating plan, do not get full wellness.
For the majority - i would estimate over 75%, once you get the right eating plan, lifestyle plan, medication plan etc etc wellness is attained and easish to maintain
Any condition where inflammation is involved, and you dont stop the inflammation will cause damage. the damaged villi of the gut do not operate properly, ongoing inflammation is linked to leaky gut and the multitude of issues that come with that (toxins not cleared properly from the gut, stress on the liver, excess of toxins in the blood stream, make their way to the brain etc etc)Does MC cause permanent damage to the colon? There seems to be a few different opinions on this out there.
this also affects nutrient/mineral absorption which has long term impact on wellness of the whole body.
As we age, the harder it is is to heal. Depending on medical history and length of time with symptoms, it can take 6-12 months for good quality healing for scenerio like yours.
some, and I would say smaller numbers ie under 15% have reintroduced gluten.Will I have to give up gluten permanently? Or once I heal from this flare will I be able to eat it again?
When you have some reading time, we will share the articles about why gluten is such an issue to your digestion. in the forms we are ingesting today it is highly inflammatory and not digested properly.
With MC 'alive and active' what works for most people is well cooked, low inflammation, low fibre meals.
Keep in mind that many people here have had to give up more than just gluten permanently. (90% or more have multiple intolerance) start preparing yourself that it may take giving up things like Dairy, Eggs, Soy to attain good remission.
Yes, things like Amitrypline in low doses are very good for slowing motility. There are quite a few members that use small dose 5mg 10mg 15mg per day for this purposeCan I continue with anti depressants as long as they aren't in the SSRI category?
there are quite a few 'MC safe' anti depressants. again there is not one definite one that works for all. Each of us are different, (the sucky part of MC world) if you do a search you will see the numerous discussions on this.
Hope this helps! happy reading and happy healing
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Hi V,
Welcome to our Internet family. Gabes appears to have addressed your questions, so I don't have much to add. You asked about pain . . . I am one of a fair number of members here who have experienced pain at that level during reactions. This is completely off most doctors' radar, because the original medical description of MC did not mention any pain. And indeed, there are many cases where pain is minimal or even absent entirely. But most of us have some degree of pain, ranging from mild to the limits of our tolerance. This is only one of many characteristics of the disease that escape most doctors.
The reason why many GI docs are uncomfortable or even resentful of patient questions about the disease is because they don't understand the disease, and they really don't have any confidence in their ability to answer those question correctly. Since they have a certificate hanging on their office wall that proclaims them to be a medical "expert", that places them in a very unpleasant position, and they really don't know how to deal with that. As an expert, they are reluctant to tell the truth (by simply saying, "I don't know"), because they charge big bucks for their advice as a perk of their "expert" status. It takes a true expert to admit that they don't know everything there is to know about a topic, despite the fact that most of us realize that no one can know everything about anything. I'm not sure if the main problem is vanity or egotism, but it's very common among medical specialists, particularly among gastroenterologists.
Be careful with antidepressants, including amitriptyline. For every member here who seems to benefit from amitriptyline, there are probably at least 1 or 2 others who blame amitriptyline for triggering their MC in the first place. As Gabes pointed out, it's definitely not for everyone.
Again, welcome aboard, and please feel free to ask anything. Incidentally, to show how prejudiced and misguided many GI docs are about who is susceptible to MC and who is not, our youngest member here was only 2 years old when she was first diagnosed. She is now 8, I believe, and she has been in remission since about a month or so after her mother joined this board on her behalf.
Tex
Welcome to our Internet family. Gabes appears to have addressed your questions, so I don't have much to add. You asked about pain . . . I am one of a fair number of members here who have experienced pain at that level during reactions. This is completely off most doctors' radar, because the original medical description of MC did not mention any pain. And indeed, there are many cases where pain is minimal or even absent entirely. But most of us have some degree of pain, ranging from mild to the limits of our tolerance. This is only one of many characteristics of the disease that escape most doctors.
The reason why many GI docs are uncomfortable or even resentful of patient questions about the disease is because they don't understand the disease, and they really don't have any confidence in their ability to answer those question correctly. Since they have a certificate hanging on their office wall that proclaims them to be a medical "expert", that places them in a very unpleasant position, and they really don't know how to deal with that. As an expert, they are reluctant to tell the truth (by simply saying, "I don't know"), because they charge big bucks for their advice as a perk of their "expert" status. It takes a true expert to admit that they don't know everything there is to know about a topic, despite the fact that most of us realize that no one can know everything about anything. I'm not sure if the main problem is vanity or egotism, but it's very common among medical specialists, particularly among gastroenterologists.
Be careful with antidepressants, including amitriptyline. For every member here who seems to benefit from amitriptyline, there are probably at least 1 or 2 others who blame amitriptyline for triggering their MC in the first place. As Gabes pointed out, it's definitely not for everyone.
Again, welcome aboard, and please feel free to ask anything. Incidentally, to show how prejudiced and misguided many GI docs are about who is susceptible to MC and who is not, our youngest member here was only 2 years old when she was first diagnosed. She is now 8, I believe, and she has been in remission since about a month or so after her mother joined this board on her behalf.
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 for all the info! I'm having a hard time finding time to catch up on some of the other boards (I have 3 small kiddos who like my full attention, lol!). I have another question, can I have a flare up in the midst of a flare? I'd been doing really well for almost a week and then woke up this morning in agony again with all of my symptoms. The GI dr told me that it wasn't really possible but it's happening (I'm going to have to start the hunt for a new GI).
Also, what do you all use to control the pain when it gets really bad? I've had 3 kids and I have a pretty high pain tolerance but some of these cramps are horrendous. My GI doctor won't prescribe anything because he doesn't believe MC causes that much pain. And I can't afford any more ER visits. Any tips?
Also, what do you all use to control the pain when it gets really bad? I've had 3 kids and I have a pretty high pain tolerance but some of these cramps are horrendous. My GI doctor won't prescribe anything because he doesn't believe MC causes that much pain. And I can't afford any more ER visits. Any tips?
I have no idea how your GI doc's brain functions (she or he must live in a world where everything works perfectly, and plays according to all the rules), but with any medical issue, no matter how bad things may be, they can always get worse, unfortunately.vdavis720 wrote:I have another question, can I have a flare up in the midst of a flare? I'd been doing really well for almost a week and then woke up this morning in agony again with all of my symptoms. The GI dr told me that it wasn't really possible but it's happening (I'm going to have to start the hunt for a new GI).
One thing about MC is that it's never bashful about kicking us when we're down. That's why we learn to do everything we can to kick it to the curb, so that hopefully it can't reach us.
The pain should fade away as the diet changes begin to take effect and your digestion improves. As far as MC is concerned, safe oral analgesics include acetaminophen (Tylenol), tramidol and narcotic painkillers. There are also transdermal options. You might find some options that will work for you in the thread at this link:
A Painkiller That Works? Any Ideas?
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! Congrats on your diagnosis. So sorry you have been through so much before you got it. You can see there are quite a few very knowledgeable and helpful people here, Angels in fact. They will have you on the right track and pain free soon.
I am a newbie too, but only experienced 2 months of D before my diagnosis. I am so grateful for that. I am awaiting testing to see what else besides gluten, I need to eliminate to avoid getting worse. I am learning so much here, already educated the NP at my GIs office.
Take care,
Summer
I am a newbie too, but only experienced 2 months of D before my diagnosis. I am so grateful for that. I am awaiting testing to see what else besides gluten, I need to eliminate to avoid getting worse. I am learning so much here, already educated the NP at my GIs office.
Take care,
Summer
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twirlitgirl
- Adélie Penguin
- Posts: 181
- Joined: Thu Aug 21, 2014 5:46 am
- Location: Canada
You are in the right place and so not alone in this disease anymore. hugs to you and your journey that is about to begin.
read all the information that is here, and any questions you have so many experts here can answer them. take a deep breath and know that these people really truly care about each and everyone here. It is an amazing bunch of people from all over the world.
cheers
Lora
diagnosed with LC by biopsy
in May 2013 , supplements B complex, Vit C ,Vit D3 Zinc, with a multivitamin, and magnesium to round out the pack.
in May 2013 , supplements B complex, Vit C ,Vit D3 Zinc, with a multivitamin, and magnesium to round out the pack.
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Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
As Tex mentioned in his reply, I wish i could offer a quick fix for the pain and discomfort, there isnt one.
If you can start a bland, well cooked, low fibre, low inflammation eating plan and give your body a chance to heal is the quickest way to minimise symptoms, including pain. (Gluten and Dairy free is a good start)
Well cooked meat and vegetables, no spices. small meals a few times through the day. Start some Vit D3 to help reduce the inflammation.
If you can start a bland, well cooked, low fibre, low inflammation eating plan and give your body a chance to heal is the quickest way to minimise symptoms, including pain. (Gluten and Dairy free is a good start)
Well cooked meat and vegetables, no spices. small meals a few times through the day. Start some Vit D3 to help reduce the inflammation.
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Welcome aboard, with sympathies. I am also a newbie - diagnosed in August, with a GI doctor who also just wanted to write a prescription and make me go away, and gave me no other information about the condition.
I have occasionally experienced severe pain and cramps also. The only worse pain level that I have experienced was during labor/childbirth.
I have sensitivity to most medications that I have ever tried, so I generally try to avoid them. One thing that I have found helpful for dealing with everything that has come with this diagnosis is mindfulness meditation. During the episodes of pain, I found it helpful to use breathing exercises (like those for childbirth) and repeating a phrase (in my case a prayer).
I have occasionally experienced severe pain and cramps also. The only worse pain level that I have experienced was during labor/childbirth.
I have sensitivity to most medications that I have ever tried, so I generally try to avoid them. One thing that I have found helpful for dealing with everything that has come with this diagnosis is mindfulness meditation. During the episodes of pain, I found it helpful to use breathing exercises (like those for childbirth) and repeating a phrase (in my case a prayer).
Courage is the price that life exacts for granting peace; the soul that knows it not, knows no release from little things. - Amelia Earhart