Hi,
I was diagnosed with mc in 2015, took Entecort, which worked ok and then I had a baby(quit meds during pregnancy) and long story short have lived with my symptoms and no meds for the last few yrs. Main symptoms are diarrhea (after I eat) and multiple times a day, joint pain, mouth sores, cracks in corners of mouth, urgency with pain. In the last few months I have had blood in my stools. Enough blood that the toilet is full of blood, I can tell sometimes that there will be blood(like I can feel it). I will have diarrhea followed by a gush of blood. I’ve been checked for internal Haemorrhoids and there were none, and I have a small external one that has never bleed and has been there for yrs.
Has anyone had bleeding? Anyone had there microscopic colitis misdiagnosed and had gone on to have ulcerative colitis?
I have a sigmoidoscopy scheduled for next week, curious if anyone else has dealt with blood?
-Steph
Bleeding...anyone else?
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi Steph,
Welcome to the group. Many of us have had bleeding from hemorrhoids sometimes, due to all the diarrhea, but rarely from other causes. MC does not cause diarrhea, although some of the meds (such as NSAIDs) that cause MC can also cause bleeding. We have the same risk of developing UC as anyone in the general public, so a few of us have subsequently developed UC. But MC is never (and I mean never) misdiagnosed. The diagnostic criteria for MC are so specific that it's frequently missed, but it's never diagnosed when it does not exist.
Please be aware that a few families possess (and pass on through the generations) a rare genetic defect that can cause sudden massive colonic bleeding for no apparent reason. Most people have never heard of it. I'm familiar with it because I inherited it, and slightly over ten years ago I had to have an emergency colectomy, in order to save my life. I barely survived, due to the rapid loss of blood, but fortunately I'm still here. My father and an uncle both bled to death in a hospital several decades ago. My uncle was 56, my dad was 65, and I was 68, when I had my episode. The surgeons removed the lower half of my father's colon, but that wasn't enough. My entire colon was removed, so I survived. Apparently though (as far as I'm aware), only males are at risk from this genetic defect, and it's quite rare, so this is not likely to be your problem. It may be specifically an ethnic issue (my heritage is German).
I'm not telling you this to scare you. I just want to make you aware that colonic bleeding is not a subject to be taken lightly — it needs to be identified, and properly treated. I'm guessing that your problem is a bleeding polyp. In my opinion, your gastrointerologist is making a mistake by ordering a sigmoidoscopy instead of a colonoscopy. He or she probably made that choice because the blood is bright red, and not darker (as it would be for most people if the bleeding originated from higher up in the GI system), so they just assumed that the bleeding is originating near the distal end of the GI tract. The problem with this is that MC patients have such rapid transit when the disease (MC) is active that bleeding from virtually any point in the digestive tract can result in the passage of bright red blood. Therefore, there's a good chance that the sigmoidoscopy may provide no useful information. Another risk (even for a colonoscopy) is that the bleeding is aggressive enough that being able to see through a scope will be obstructed by the blood. That was true in my case.
That said, I've had bleeding from hemorrhoids that turned the water in the bowl bright red every morning. The GI doc told me that I would soon be begging him for surgery to correct the hemmorhoids, but that never happened. As soon as I changed my diet and my gut began to heal (so that the hemorrhoids were no longer inflamed) the bleeding stopped (as the diarrhea subsided).
Again, welcome aboard, and please feel free to ask anything.
Tex
Welcome to the group. Many of us have had bleeding from hemorrhoids sometimes, due to all the diarrhea, but rarely from other causes. MC does not cause diarrhea, although some of the meds (such as NSAIDs) that cause MC can also cause bleeding. We have the same risk of developing UC as anyone in the general public, so a few of us have subsequently developed UC. But MC is never (and I mean never) misdiagnosed. The diagnostic criteria for MC are so specific that it's frequently missed, but it's never diagnosed when it does not exist.
Please be aware that a few families possess (and pass on through the generations) a rare genetic defect that can cause sudden massive colonic bleeding for no apparent reason. Most people have never heard of it. I'm familiar with it because I inherited it, and slightly over ten years ago I had to have an emergency colectomy, in order to save my life. I barely survived, due to the rapid loss of blood, but fortunately I'm still here. My father and an uncle both bled to death in a hospital several decades ago. My uncle was 56, my dad was 65, and I was 68, when I had my episode. The surgeons removed the lower half of my father's colon, but that wasn't enough. My entire colon was removed, so I survived. Apparently though (as far as I'm aware), only males are at risk from this genetic defect, and it's quite rare, so this is not likely to be your problem. It may be specifically an ethnic issue (my heritage is German).
I'm not telling you this to scare you. I just want to make you aware that colonic bleeding is not a subject to be taken lightly — it needs to be identified, and properly treated. I'm guessing that your problem is a bleeding polyp. In my opinion, your gastrointerologist is making a mistake by ordering a sigmoidoscopy instead of a colonoscopy. He or she probably made that choice because the blood is bright red, and not darker (as it would be for most people if the bleeding originated from higher up in the GI system), so they just assumed that the bleeding is originating near the distal end of the GI tract. The problem with this is that MC patients have such rapid transit when the disease (MC) is active that bleeding from virtually any point in the digestive tract can result in the passage of bright red blood. Therefore, there's a good chance that the sigmoidoscopy may provide no useful information. Another risk (even for a colonoscopy) is that the bleeding is aggressive enough that being able to see through a scope will be obstructed by the blood. That was true in my case.
That said, I've had bleeding from hemorrhoids that turned the water in the bowl bright red every morning. The GI doc told me that I would soon be begging him for surgery to correct the hemmorhoids, but that never happened. As soon as I changed my diet and my gut began to heal (so that the hemorrhoids were no longer inflamed) the bleeding stopped (as the diarrhea subsided).
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.
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tommyboywalker
- Adélie Penguin
- Posts: 126
- Joined: Tue Jan 23, 2018 3:49 pm
Hi Steph, and welcome to the forum. A lot of good folks and information here.
If I had these symptoms, I would actually request a diagnostic colonoscopy. Through a Gastroenteroligist, if you aren't currently seeing one.
Colonoscopy is the gold standard for symptoms like you are experiencing. At the same time, they can take some biopsies that would likely confirm your microscopic colitis.
So to confirm, did they diagnose you with MC during a colonoscopy in 2015? If so, any polyps at that time?
All the best to you, please keep us updated....
If I had these symptoms, I would actually request a diagnostic colonoscopy. Through a Gastroenteroligist, if you aren't currently seeing one.
Colonoscopy is the gold standard for symptoms like you are experiencing. At the same time, they can take some biopsies that would likely confirm your microscopic colitis.
So to confirm, did they diagnose you with MC during a colonoscopy in 2015? If so, any polyps at that time?
All the best to you, please keep us updated....
Hi,
I was diagnosed with microscopic colitis in 2015 after a colonoscopy and biopsy, there were no polyps present at that time. I have lived the last few years just trying to "deal" with symptoms. I always have diarrhea but there are times i feel less crappy. I started seeing blood for the first time in January, and the bleeding comes and goes. Its such a weird sensation but its like I can feel a build up of blood above a bowel movement before I go. So its diarrhea and then a gush of blood. I have been in contact with my GI and I have a flexible sigmoidosopy next Thursday, and he has prescribed me entocort to start again. My blood work that i just had down looked okay according to my GI. So I'm not sure what to think, I was checked for internal hemorrhoids(by my family doctor)and there was none, seeing blood has caused a lot of fear so hopefully I will get some answers on Thursday.
-Steph
I was diagnosed with microscopic colitis in 2015 after a colonoscopy and biopsy, there were no polyps present at that time. I have lived the last few years just trying to "deal" with symptoms. I always have diarrhea but there are times i feel less crappy. I started seeing blood for the first time in January, and the bleeding comes and goes. Its such a weird sensation but its like I can feel a build up of blood above a bowel movement before I go. So its diarrhea and then a gush of blood. I have been in contact with my GI and I have a flexible sigmoidosopy next Thursday, and he has prescribed me entocort to start again. My blood work that i just had down looked okay according to my GI. So I'm not sure what to think, I was checked for internal hemorrhoids(by my family doctor)and there was none, seeing blood has caused a lot of fear so hopefully I will get some answers on Thursday.
-Steph
Thanks Tex for your response. I think a colonoscopy would have been a better test then the sigmoidoscopy but I’m wondering if he went that route so it could be done quickly? This test he does in his office with no sedation
.
I have changed my diet pretty significantly over the last few years. I was a vegetarian since the age of seven and now I’m a vegan/plant based due to dairy allergies. I have cut out dairy, soy, most gluten, corn, etc to no avail. I have gone on juice diets, fasting diets, vegan keto and nothing has helped the inflammation. The only think that made me feel better for a few days was the juice diet but it’s not something that could be long term. I will request further testing if this test doesn’t show a source of bleeding.
-Steph
. I have changed my diet pretty significantly over the last few years. I was a vegetarian since the age of seven and now I’m a vegan/plant based due to dairy allergies. I have cut out dairy, soy, most gluten, corn, etc to no avail. I have gone on juice diets, fasting diets, vegan keto and nothing has helped the inflammation. The only think that made me feel better for a few days was the juice diet but it’s not something that could be long term. I will request further testing if this test doesn’t show a source of bleeding.
-Steph
Hello Steph,
Thanks for the extra information. Based on our long term experience, eliminating "most gluten" is actually worse than eliminating none. You have to eliminate it 100% (even tiny traces). and success won't happen overnight. It takes a long time for the inflammation to develop, and it takes a long time to resolve it. Our intestines heal slowly.
Our immune system is a sophisticated network. Believe it or not, it actually becomes much more sensitive to food issues when that food becomes limited. This is because it is designed to totally eradicate any issue that it perceives as a threat to our well being. Therefore when it "thinks" it is getting closer to eradicating the problem, it doubles down on it's efforts, in a futile attempt to destroy every last tiny bit of the problem (which in this case is gluten). This results in an increase in the inflammation level, due to the fact that inflammation is the first step of the healing process.
Tex
Thanks for the extra information. Based on our long term experience, eliminating "most gluten" is actually worse than eliminating none. You have to eliminate it 100% (even tiny traces). and success won't happen overnight. It takes a long time for the inflammation to develop, and it takes a long time to resolve it. Our intestines heal slowly.
Our immune system is a sophisticated network. Believe it or not, it actually becomes much more sensitive to food issues when that food becomes limited. This is because it is designed to totally eradicate any issue that it perceives as a threat to our well being. Therefore when it "thinks" it is getting closer to eradicating the problem, it doubles down on it's efforts, in a futile attempt to destroy every last tiny bit of the problem (which in this case is gluten). This results in an increase in the inflammation level, due to the fact that inflammation is the first step of the healing process.
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.