Hi there!
I just thought I'd introduce myself first, I am a 26 year old female, and after almost a year of being very ill with boughts of D up to 20x a day, lasting weeks to months at a time, BLOOD, lots of mucus, joint pain .. I finally was rushed in for an emergency colonoscopy after being on the routine wait list for far too long and received a diagnosis of MC (lymphocytatic).
I'm a little surprised, as I keep reading MC does not cause bleeding , but the biopsies must be right. Before my colonoscopy, I was put on sulfasalazine which helped my symptoms alot, but after the scope where they saw no signs of IBD visually I was taken off them and my symptoms returned.. Here is the kicker though, and it's the main reason why I came here.
My GI does not deny that MC is colitis, is causing me to be very sick, etc but she says MC is not an IBD, therefore I shouldn't take the sulfasalazine? .. I am SO confused, because some websites I find say that it is IBD, some say that it isn't ? Is there really that much of a lack in research?
I'm also seeing some patients are on steroids, etc but I'm just told to take immodium now, which does help the D but not the pain - at all. In fact, I find my pain is worse. Also, my disease is pretty severe, my lymphocytes were very high, there was some mild inflammation visibile on the scope, I am bleeding (?) I would suspect a good doctor would allow me to continue my meds or atleast try me on something new.
Can anyone give me more insight? Is MC an IBD? Why is there differing information (even from Dr to Dr)? Is there a cure? What should my next move be?
I am going to see my GI and my family doctor tomorrow , 2 different appointments, so if you have any suggestions for what I should say, ask, demand please let me know!
Newly Diagnosed
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi,
Welcome to our Internet family. Your GI doc should have her specialty certification revoked for being so ignorant about MC. It is most definitely an inflammatory bowel disease by definition. You should find a more knowledgeable GI doc as soon as possible. She will be counterproductive for your recovery.
I'm not sure where the bleeding is coming from, but it is not caused by the MC. It should be tracked down by your GI doc ASAP. MC does not cause any lesions that can result in bleeding. However, the use of sulfasalazine can cause that symptom. It is a very old sulfa drug, no longer indicated for the treatment of MC. It's still occasiponally used for the treatment of RA. Sulfa drugs should never be used by MC patients because it's a derivative of salicylic acid (aspirin) and can cause bleeding and diarrhea.
Sulfasalazine is metabolized (by bacteria) into sulfapyridine and mesalazine (also known as 5-aminosalicylic acid or 5-ASA). When using sulfasalazine, the sulfapyridine level should be closely monitored because it can have very negative effects for many patients, and it's only useful for treating RA. The mesalazine (or mesalamine) is useful for treating IBDs, but it's available as a separate product (without the sulfapyradine).
Very few doctors know much about MC and especially about treating MC. That's why there's conflicting information among them. If you want to take a med, it should be some form of mesalamine or budesonide, not a sulfa drug. If you want to control the MC (with or without a drug), you have to change your diet to avoid the foods that are causing the inflammation in the first place. Certain foods cause the immune system to produce antibodies and these perpetuate the inflammation that causes MC. If you want to see a detailed explanation of exactly how and why that happens, I'll be glad to go over it in another post (because it's long and complex).
If you have inflammation visible through the scope, you probably have something in addition to MC. Do you have a copy or your pathology report? It will the describe the type of inflammation.
Again, welcome aboard and please feel free to ask anything.
Tex
Welcome to our Internet family. Your GI doc should have her specialty certification revoked for being so ignorant about MC. It is most definitely an inflammatory bowel disease by definition. You should find a more knowledgeable GI doc as soon as possible. She will be counterproductive for your recovery.
I'm not sure where the bleeding is coming from, but it is not caused by the MC. It should be tracked down by your GI doc ASAP. MC does not cause any lesions that can result in bleeding. However, the use of sulfasalazine can cause that symptom. It is a very old sulfa drug, no longer indicated for the treatment of MC. It's still occasiponally used for the treatment of RA. Sulfa drugs should never be used by MC patients because it's a derivative of salicylic acid (aspirin) and can cause bleeding and diarrhea.
Sulfasalazine is metabolized (by bacteria) into sulfapyridine and mesalazine (also known as 5-aminosalicylic acid or 5-ASA). When using sulfasalazine, the sulfapyridine level should be closely monitored because it can have very negative effects for many patients, and it's only useful for treating RA. The mesalazine (or mesalamine) is useful for treating IBDs, but it's available as a separate product (without the sulfapyradine).
Very few doctors know much about MC and especially about treating MC. That's why there's conflicting information among them. If you want to take a med, it should be some form of mesalamine or budesonide, not a sulfa drug. If you want to control the MC (with or without a drug), you have to change your diet to avoid the foods that are causing the inflammation in the first place. Certain foods cause the immune system to produce antibodies and these perpetuate the inflammation that causes MC. If you want to see a detailed explanation of exactly how and why that happens, I'll be glad to go over it in another post (because it's long and complex).
If you have inflammation visible through the scope, you probably have something in addition to MC. Do you have a copy or your pathology report? It will the describe the type of inflammation.
Again, welcome aboard and please feel free to ask anything.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Welcome to the forum!
Yes we are an inflammatory bowel disease. We are a lesser known one (as you are finding out.) Even docs in the US don't know much about MC. http://www.mayoclinic.org/diseases-cond ... N-20034908
We have a foundation that helps to educate on our disease. Click on top middle of the website. Also if you don't have Tex's book it is worth the money. Top right of website.
It sounds like you have a positive diagnosis of MC from biopsies. I'm hoping Tex or someone else can chime in on the bleeding.
I believe the bleeding would be uncommon for us. I would be talking to the docs about the bleeding. I'm not familiar with Crohns and UC. Have the docs ruled them out?
Ditch all gluten and all dairy (including yogurt and lactose free products.) It is the casein in the dairy that is problematic for us.
You have come to the right place!
Yes we are an inflammatory bowel disease. We are a lesser known one (as you are finding out.) Even docs in the US don't know much about MC. http://www.mayoclinic.org/diseases-cond ... N-20034908
We have a foundation that helps to educate on our disease. Click on top middle of the website. Also if you don't have Tex's book it is worth the money. Top right of website.
It sounds like you have a positive diagnosis of MC from biopsies. I'm hoping Tex or someone else can chime in on the bleeding.
I believe the bleeding would be uncommon for us. I would be talking to the docs about the bleeding. I'm not familiar with Crohns and UC. Have the docs ruled them out?
Ditch all gluten and all dairy (including yogurt and lactose free products.) It is the casein in the dairy that is problematic for us.
You have come to the right place!
Thank you both for the replies! I'm honestly astounded that my GI (of all doctors) suggests that MC is not an IBD, those were her exact words.
As for visible inflammation, my visual colonoscopy reported mild inflammation/redness in sigmoid colon (not specific, could be secondary to prep) ... other than that nothing suggested IBD until my biopsies came back positive with a large increase in IEL's (indicating lymphocytic colitis) . My GI was aware of the bleeding, which prompted the emergency scope. There were no leisons found though so as for the bleeding I am at a loss, it's not a huge problem anymore but I was bleeding ALOT prior to taking the sulfasalazine. I was on sulfasalazine for 3 weeks and then taken off after the colonoscopy looked otherwise clear for IBD.
I'm going back to the same GI tomorrow, I don't know what to say to her. I want to call her stupid or confront her on the fact that other literature, people, doctors state that MC is an IBD. I live in Canada, Atlantic Canada at that and here it is not very easy to just switch doctors. You're lucky at all to even have a GI without being on a 7 year wait list, if it weren't for the severity of my illness I still would have no diagnosis, probably even for a few years .
I started the SCD diet last summer and stayed on it for a while, but at the time I wasn't sure what was wrong with me. I think with an official diagnosis now, I am definitely going to go back to the diet and see if I can manage things that way. Do either of you take Imodium my doc suggested taking that instead of sulfasalazine.
I'll try to get my hands on the official path report tomorrow, I did have it and then somehow misplaced it. I'm sure it's somewhere in my house. It basically said this from what I remember:
Patchy inflammation, large increase IEL's (lymphocytes) in L and R colon. Consistent with Lymphocytic Colitis. I can't remember it word for word but that's what sticks
As for visible inflammation, my visual colonoscopy reported mild inflammation/redness in sigmoid colon (not specific, could be secondary to prep) ... other than that nothing suggested IBD until my biopsies came back positive with a large increase in IEL's (indicating lymphocytic colitis) . My GI was aware of the bleeding, which prompted the emergency scope. There were no leisons found though so as for the bleeding I am at a loss, it's not a huge problem anymore but I was bleeding ALOT prior to taking the sulfasalazine. I was on sulfasalazine for 3 weeks and then taken off after the colonoscopy looked otherwise clear for IBD.
I'm going back to the same GI tomorrow, I don't know what to say to her. I want to call her stupid or confront her on the fact that other literature, people, doctors state that MC is an IBD. I live in Canada, Atlantic Canada at that and here it is not very easy to just switch doctors. You're lucky at all to even have a GI without being on a 7 year wait list, if it weren't for the severity of my illness I still would have no diagnosis, probably even for a few years .
I started the SCD diet last summer and stayed on it for a while, but at the time I wasn't sure what was wrong with me. I think with an official diagnosis now, I am definitely going to go back to the diet and see if I can manage things that way. Do either of you take Imodium my doc suggested taking that instead of sulfasalazine.
I'll try to get my hands on the official path report tomorrow, I did have it and then somehow misplaced it. I'm sure it's somewhere in my house. It basically said this from what I remember:
Patchy inflammation, large increase IEL's (lymphocytes) in L and R colon. Consistent with Lymphocytic Colitis. I can't remember it word for word but that's what sticks
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Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
firstly welcome (and sympathies that you had to find us)
and also a hug, to say sorry that your doctor is so naïve regarding MC etc.
RE the bleeding, is the bleeding red when you pass the bowel motion? or is it dark red/almost black within the poop?
All I can suggest is to print out some of the information that is provided here in the forum and also articles from the Microscopic Colitis Foundation, that explain what MC is (whole of body not just diarrhea) and also outline medication protocols to be used for MC
if the doctor is not receptive or willing to embrace this, then you may have to consider finding a new doctor.
Brandy has made some diet suggestions, we have loads of information and meal suggestions that can help reduce inflammation and optimise healing.
link to discussion about medication treatment guidelines that was published in medical journal in late 2015
http://perskyfarms.com/phpBB2/viewtopic ... medication
hope this helps
good luck for the appointments
and also a hug, to say sorry that your doctor is so naïve regarding MC etc.
RE the bleeding, is the bleeding red when you pass the bowel motion? or is it dark red/almost black within the poop?
All I can suggest is to print out some of the information that is provided here in the forum and also articles from the Microscopic Colitis Foundation, that explain what MC is (whole of body not just diarrhea) and also outline medication protocols to be used for MC
if the doctor is not receptive or willing to embrace this, then you may have to consider finding a new doctor.
Brandy has made some diet suggestions, we have loads of information and meal suggestions that can help reduce inflammation and optimise healing.
link to discussion about medication treatment guidelines that was published in medical journal in late 2015
http://perskyfarms.com/phpBB2/viewtopic ... medication
hope this helps
good luck for the appointments
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
-
Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
forgot to answer this
Is there a cure?
no cure persay, but a large percentage of members get to a good stage of remission.
what is remission? the best description by most is lots of days with minimal symptoms.
if you read through some of the posts in the member success stories area you will see what others have done, and the level of 'remission' or getting their lives back status, and how long it took.
Sadly MC is 'for life' we cant eradicate it, BUT we can live it and not have it rule (wreck) our days; via with the right approaches, with eating plan, lifestyle plan, the right nutrients/supplements and good mental and emotional attitude.
as you are a young adult, your body is super primed for good healing. lots of people with MC of similar age can get a good stage of remission reasonably easily and maintain it for a good duration with the right 'MC management plan'
Is there a cure?
no cure persay, but a large percentage of members get to a good stage of remission.
what is remission? the best description by most is lots of days with minimal symptoms.
if you read through some of the posts in the member success stories area you will see what others have done, and the level of 'remission' or getting their lives back status, and how long it took.
Sadly MC is 'for life' we cant eradicate it, BUT we can live it and not have it rule (wreck) our days; via with the right approaches, with eating plan, lifestyle plan, the right nutrients/supplements and good mental and emotional attitude.
as you are a young adult, your body is super primed for good healing. lots of people with MC of similar age can get a good stage of remission reasonably easily and maintain it for a good duration with the right 'MC management plan'
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 brandy,
The doc definitely takes me seriously, I've shown pics before. That's why I was able to see a GI so fast and that's why I had testing done in the first place! I'm assuming the official diagnosis is just MC though, nothing else showed up with the biopsy or the colonoscopy visual aside from the lymphocytic colitis.
They didn't even see hemmroids during the scope. No idea where the blood is coming from, but I can't claim they aren't taking me seriously. I'm grateful to have gotten the care that I needed. Others wait a very long time on wait lists to get in for colonoscopies and to see specialists.
The doc definitely takes me seriously, I've shown pics before. That's why I was able to see a GI so fast and that's why I had testing done in the first place! I'm assuming the official diagnosis is just MC though, nothing else showed up with the biopsy or the colonoscopy visual aside from the lymphocytic colitis.
They didn't even see hemmroids during the scope. No idea where the blood is coming from, but I can't claim they aren't taking me seriously. I'm grateful to have gotten the care that I needed. Others wait a very long time on wait lists to get in for colonoscopies and to see specialists.
SCD is fine if you ditch the yogurt and make sure any veggies are overcooked.
We have several people that have not all that great docs and not many options.
Suggest don't get hung up on whether it is an IBD. You know it is. That is all that matters.
Suggested script to talk about the bleeding---
"Doctor Jones. I'm concerned about the bleeding. What would be your thoughts on the bleeding? Here is a picture. Show toilet picture. Doctor Jones what are your thoughts as to the bleeding and possibly Crohns? Ulcerative Colitis? or Cancer? What are your thoughts on getting to the bottom of the bleeding?"
Immodium is stop gap. It is more of a temporary fix for a business appointment or travel. With our level of IBD there are better options. My experience with last summer was I took max dose on label (can't remember) and it helped with "urgency" but it did not stop the WD. Immodium is more for IBS not IBD which we have but she does not think we have.
IF you want scrip from her....suggested script to say to her....
"Doctor Jones, I've tried the immodium with max dose on the box but I still have WD 10 x per day. What are your thoughts on
budesonide (Entocort or Uceris), mesalamine, cholestyramine or the pepto bismol protocol for MC?"
SUGGEST DO NOT MENTION FORUM OR THAT YOU READ ANYTHING ON LINE. JUST MEMORIZE THE DRUGS, SAY THE SENTENCE AND STOP TALKING. She will then have to leave the room for about 10 minutes to look everything up. IT is sad you have to do her job.
Pepto protocol I think is 6 or 8 tablets per day, 6 weeks, over the counter, NEGATIVE IS SOME GET TINNITIS.
Cholestyramine is pretty benign but you would probably need to give it 6 weeks to see if it works.
Mesalamine--works for some, I don't know much about it.
Budesonide (Entocort or Uceris) is commonly prescribed for MC, works for most, negative is it can be tough to get off of, you need to do a long slow taper to get off of it, folks are generally on it 4-6 months. It is a steroid but safer than prednisone.
These are all routine drugs that I've ranked from safest to strongest.
It is possible to go into remission without drugs (diet alone). As a reference it recently took me about 9 months.
Be aware the drugs don't heal us. They help with the symptoms. Diet is very key. I've done the pepto regimen, cholestyamine and also budesonide (separately). There is no magic bullet but the drugs can help you get your life back.
I'm in remission now. My life is good. You will get there.
We have several people that have not all that great docs and not many options.
Suggest don't get hung up on whether it is an IBD. You know it is. That is all that matters.
Suggested script to talk about the bleeding---
"Doctor Jones. I'm concerned about the bleeding. What would be your thoughts on the bleeding? Here is a picture. Show toilet picture. Doctor Jones what are your thoughts as to the bleeding and possibly Crohns? Ulcerative Colitis? or Cancer? What are your thoughts on getting to the bottom of the bleeding?"
Immodium is stop gap. It is more of a temporary fix for a business appointment or travel. With our level of IBD there are better options. My experience with last summer was I took max dose on label (can't remember) and it helped with "urgency" but it did not stop the WD. Immodium is more for IBS not IBD which we have but she does not think we have.
IF you want scrip from her....suggested script to say to her....
"Doctor Jones, I've tried the immodium with max dose on the box but I still have WD 10 x per day. What are your thoughts on
budesonide (Entocort or Uceris), mesalamine, cholestyramine or the pepto bismol protocol for MC?"
SUGGEST DO NOT MENTION FORUM OR THAT YOU READ ANYTHING ON LINE. JUST MEMORIZE THE DRUGS, SAY THE SENTENCE AND STOP TALKING. She will then have to leave the room for about 10 minutes to look everything up. IT is sad you have to do her job.
Pepto protocol I think is 6 or 8 tablets per day, 6 weeks, over the counter, NEGATIVE IS SOME GET TINNITIS.
Cholestyramine is pretty benign but you would probably need to give it 6 weeks to see if it works.
Mesalamine--works for some, I don't know much about it.
Budesonide (Entocort or Uceris) is commonly prescribed for MC, works for most, negative is it can be tough to get off of, you need to do a long slow taper to get off of it, folks are generally on it 4-6 months. It is a steroid but safer than prednisone.
These are all routine drugs that I've ranked from safest to strongest.
It is possible to go into remission without drugs (diet alone). As a reference it recently took me about 9 months.
Be aware the drugs don't heal us. They help with the symptoms. Diet is very key. I've done the pepto regimen, cholestyamine and also budesonide (separately). There is no magic bullet but the drugs can help you get your life back.
I'm in remission now. My life is good. You will get there.
Yes, the cleanout solution is so caustic that it could have caused the inflamed appearance of certain areas during the colonoscopy. I suggest you not be too hard on your gastro doc — you may need her help one of these days. She is not the only gastroenterologist in the world who doesn't realize/recognize that MC is an IDB. As hard as it is to find a decent GI doc in the States, it's probably a lot worse in Canada (because of the rules of the health care system). We are headed that way.
Imodium is one of the safest drugs available, so if it helps, it's certainly OK to use it, especially on days when you absolutely have to be out and about. You can safely use up to 8 tablets per day, but like all meds, don't use any more than you need to get the job done.
I agree in general with Brandy's Suggestions.
Tex
Imodium is one of the safest drugs available, so if it helps, it's certainly OK to use it, especially on days when you absolutely have to be out and about. You can safely use up to 8 tablets per day, but like all meds, don't use any more than you need to get the job done.
I agree in general with Brandy's Suggestions.
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.
http://www.microscopiccolitisfoundation.org/
If you feel like it is appropriate you can print off info from the microscopic foundation website and bring it in.
It is a professional website for medical professionals as well as those with the disease.
I would not mention you were chatting on a forum.
The foundation was developed to help educate doctors and patients.
If you feel like it is appropriate you can print off info from the microscopic foundation website and bring it in.
It is a professional website for medical professionals as well as those with the disease.
I would not mention you were chatting on a forum.
The foundation was developed to help educate doctors and patients.
Thank you sooo much, everyone. Especially you Brandy, very informative!
When I said I'd called my GI stupid, I was joking lol .. but I do feel very frustrated and left in the dark with the lack of information and misinformation from her. I will probably just tell her that since getting my path report I've been doing thorough reading and that I found the Microscopic Colitis Foundation very helpful. I'll tell her that on the foundation website it says that MC is an IBD and that different meds/ diets were listed and what her thoughts on that were. ( I have been on the website for like an hour since you shared it with me, and all of that is true)
Thank you so much though, forums are truly the best when it comes to things like this. It's nice to find others who are in the same boat, and you're right, as frustrated as I am with my doctor she really is a nice person, and I'm sure she'll be open to this dialogue. There might come a day where I really need her, so I'll try not to burn any bridges.
I'll let you all know how it goes tomorrow
When I said I'd called my GI stupid, I was joking lol .. but I do feel very frustrated and left in the dark with the lack of information and misinformation from her. I will probably just tell her that since getting my path report I've been doing thorough reading and that I found the Microscopic Colitis Foundation very helpful. I'll tell her that on the foundation website it says that MC is an IBD and that different meds/ diets were listed and what her thoughts on that were. ( I have been on the website for like an hour since you shared it with me, and all of that is true)
Thank you so much though, forums are truly the best when it comes to things like this. It's nice to find others who are in the same boat, and you're right, as frustrated as I am with my doctor she really is a nice person, and I'm sure she'll be open to this dialogue. There might come a day where I really need her, so I'll try not to burn any bridges.
I'll let you all know how it goes tomorrow