Hi,
I'm new here. I am a 41 year old woman with autoimmune thyroiditis (dx at 30) and was diagnosed with LC last year after nearly a year of terrible diarrhea, severe pain, distended belly, etc. I had a colonoscopy that couldn't even be completed due to the condition of the colon. I went on Entocort, which took a little time, but finally did help the diarrhea. I am never normal, but it is much better. I am still having terrible trouble with the distended belly, so I went back on it for a short term about a month ago.
The reason I'm posting:
First and foremost, a couple of weeks ago my legs broke out in an angry rash and tiny sores and 2 very large fatty type lumps that felt bruised. I covered them in cortisone for a few days and the skin improved quickly but I am left with these lumps on my shins. One is nearly the size of a golf ball. From what I read, they seem quite obviously to be erythema nodosum which occur with IBD -- however, I cannot find that they occur with LC. Does anyone else get these????
And while I'm here, a couple more questions,
Did anyone else here with LC take accutane? I took it over 10 years ago. I hear it is also tied to IBD, but only Crohns and UC... if so, has anyone else pursued the lawsuit?
My colonoscopy was terrible. The lining of the colon was red, patchy, irritated. Bled whenever the scope touched it. It was also in some kind of spasm and even a pediatric scope couldn't pass through. I read that a colon with LC looks normal and only a biopsy shows an issue. Have other people had a colonoscopy result like this? I have a concern that perhaps there is even more going on with the health of my colon...
And lastly, any help for the painful distended abdomen? I am so uncomfortable!
Thanks.
erythema nodosum - lumps on legs.. and a couple other things
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi Kemah,
Welcome to the board. I don't recall anyone here posting about erythema nodosum, previously, so apparently it's not a common symptom of MC. That issue, together with the visibly-inflamed, and tortuous condition of your colon, suggests that you apparently have something more than just MC. Do you have a copy of the pathology report? I have a hunch that your GI doc is not telling you everything that is in the report, or else, he or she may have misinterpreted the report.
I would suggest obtaining a copy of the report, (unless you already have it), and possibly asking for a second opinion on your biopsy samples, IOW, requesting that another pathologist, (possibly at another hospital), examine your pathology slides. Did the report mention diverticulitis? Something besides LC is causing those gross, (visible to the naked eye), symptoms. Diverticular colitis is a possibility, or Crohn's disease, for example.
MC is an IBD, so you clearly have legal grounds to participate in a lawsuit on Accutane, and in fact, it may be the primary reason for the adverse physical changes that have taken place in your colon, because you obviously have something more than just lymphocytic colitis affecting your colon.
The distended abdomen and retained gas issues are due to food sensitivities. When the genes that predispose to LC are triggered, the genes that predispose to certain food-sensitivities are also triggered at the same time, for most of us. The primary problem is non-celiac gluten-sensitivity, and for most us, sensitivity to casein, (the main protein in all dairy products), and about half of us are also sensitive to soy. Some of us have other food-sensitivities, as well. The odds are quite high, that avoiding all traces of gluten, and dairy products, will eliminate the bloating problem. If that doesn't do the trick, then you probably also need to eliminate soy from your diet.
The diet isn't easy, but it will not only eliminate the bloating, but it will also eliminate all your LC symptoms, if you track down and remove all the foods to which you are sensitive. Most GI specialists are unaware that food-sensitivities are connected with LC, and they will argue that diet has nothing to do with the disease, but they are absolutely wrong, and the experiences of hundreds and hundreds of members here, prove that the doctors who dispute the connection, are wrong. Removing those food-sensitivities from the diet, will prevent the inflammation that causes LC, so that in most cases, remission can be maintained without any meds.
Incidentally, I had a similar problem with strictures and a tortuous path for the scope, when I had my colonoscopy. My GI doc blamed it on diverticulitis, but I have a hunch that something else was going on, (such as diverticular colitis, which often causes strictures).
Again, welcome aboard, and I hope you can find the answers that you are seeking.
Tex (Wayne)
Welcome to the board. I don't recall anyone here posting about erythema nodosum, previously, so apparently it's not a common symptom of MC. That issue, together with the visibly-inflamed, and tortuous condition of your colon, suggests that you apparently have something more than just MC. Do you have a copy of the pathology report? I have a hunch that your GI doc is not telling you everything that is in the report, or else, he or she may have misinterpreted the report.
I would suggest obtaining a copy of the report, (unless you already have it), and possibly asking for a second opinion on your biopsy samples, IOW, requesting that another pathologist, (possibly at another hospital), examine your pathology slides. Did the report mention diverticulitis? Something besides LC is causing those gross, (visible to the naked eye), symptoms. Diverticular colitis is a possibility, or Crohn's disease, for example.
MC is an IBD, so you clearly have legal grounds to participate in a lawsuit on Accutane, and in fact, it may be the primary reason for the adverse physical changes that have taken place in your colon, because you obviously have something more than just lymphocytic colitis affecting your colon.
The distended abdomen and retained gas issues are due to food sensitivities. When the genes that predispose to LC are triggered, the genes that predispose to certain food-sensitivities are also triggered at the same time, for most of us. The primary problem is non-celiac gluten-sensitivity, and for most us, sensitivity to casein, (the main protein in all dairy products), and about half of us are also sensitive to soy. Some of us have other food-sensitivities, as well. The odds are quite high, that avoiding all traces of gluten, and dairy products, will eliminate the bloating problem. If that doesn't do the trick, then you probably also need to eliminate soy from your diet.
The diet isn't easy, but it will not only eliminate the bloating, but it will also eliminate all your LC symptoms, if you track down and remove all the foods to which you are sensitive. Most GI specialists are unaware that food-sensitivities are connected with LC, and they will argue that diet has nothing to do with the disease, but they are absolutely wrong, and the experiences of hundreds and hundreds of members here, prove that the doctors who dispute the connection, are wrong. Removing those food-sensitivities from the diet, will prevent the inflammation that causes LC, so that in most cases, remission can be maintained without any meds.
Incidentally, I had a similar problem with strictures and a tortuous path for the scope, when I had my colonoscopy. My GI doc blamed it on diverticulitis, but I have a hunch that something else was going on, (such as diverticular colitis, which often causes strictures).
Again, welcome aboard, and I hope you can find the answers that you are seeking.
Tex (Wayne)
Hi Tex,
I do have the report from the colonoscopy describing the condition of the colon. Inflamed, friable, etc. Were words used a lot. I have been worried about Crohns. My stepbrother, a GI in the Midwest, is too... The erythema nodosum makes my fears stronger. I don't know where to turn to. The first GI I went to told me, "you seem like the kind of person who could live with this" and sent me on my way with no testing. I have a call out to my current GI and am going to ask for another colonoscopy asap.
So, when you suspected something else was going on, was there?
I do have the report from the colonoscopy describing the condition of the colon. Inflamed, friable, etc. Were words used a lot. I have been worried about Crohns. My stepbrother, a GI in the Midwest, is too... The erythema nodosum makes my fears stronger. I don't know where to turn to. The first GI I went to told me, "you seem like the kind of person who could live with this" and sent me on my way with no testing. I have a call out to my current GI and am going to ask for another colonoscopy asap.
So, when you suspected something else was going on, was there?
Kemah
Kemah,
Terms such a "inflamed" and "friable" describe gross physical characteritics. In order to arrive at a diagnosis of Crohn's disease, the presence of certain markers such as visible ulceration, and/or markers that are visible only under the microscope, are generally considered to be necessary - terms such as a transmural pattern of inflammation, (meaning that the inflammation may span the entire thickness of the intestinal wall). With LC, for example, the inflammation never penetrates below the lamina propria, in the sub-epithelial zone of the mucosa. Under the microscope, biopsy samples from the intestine of a patient with Crohn's disease, will typically show mucosal inflammation, dominated by focal infiltration of neutrophils, which usually occurs above areas of lymphoid aggregates. If the neutrophils infiltrate the crypts, it can lead to inflammation, (crypititis), or abscess, (crypt abscess). In about half of all cases, granulomas, (which are aggregates of macrophage derivatives known as giant cells), are present, and these markers are considered to be very specific for Crohn's disease.
Note, however, that there is a type of microscopic colitis marked by giant cells, (in fact, it is called giant cell MC). Another possible marker of Crohn's disease is a change in the tissue type, (known as metaplasia). An example of metaplasia would be Paneth cell metaplasia, (which involves the development of Paneth cells. Again, though, the possibility of confusion exists, becasue there is a type of MC known as Paneth cell MC. Anyway, if any of these conditions are mentioned in the pathologist's report, then the possibility of Crohn's disease exists.
As to why doctors withhold information - who knows? Maybe it's a misguided attempt to cover their butt. More than a few members here have personally found that it's not uncommon for GI specialists to not bother to tell them that they had some type of microscopic colitis, which was clearly noted in the pathology report. Some say simply that, "nothing significant was found", and some refer to it as "IBS". I have a hunch that those doctors just don't understand the disease, and/or they aren't confident about their ability to properly treat it, and so they just assume that what patients don't know, won't hurt them.
In some cases, they consider it to be a benign disease, that will soon run it's course, without intervention. In most cases, that's far from correct, of course.
In my own case, in the followup after the colonoscopy, my doctor failed to mention the fact that I had a stenosis in my sigmoid colon. About 5 years later, I had to have emergency abdominal surgery, to remove a section of my sigmoid colon, because of a blockage caused by that stenosis. After the surgery, I obtained a copy of the colonoscopy report that was done 5 years earlier, and sure enough, the stenosis was clearly described in the report. There was no pathology report associated with the colonoscopy exam, since he failed to take biopsy samples.
Tex
Terms such a "inflamed" and "friable" describe gross physical characteritics. In order to arrive at a diagnosis of Crohn's disease, the presence of certain markers such as visible ulceration, and/or markers that are visible only under the microscope, are generally considered to be necessary - terms such as a transmural pattern of inflammation, (meaning that the inflammation may span the entire thickness of the intestinal wall). With LC, for example, the inflammation never penetrates below the lamina propria, in the sub-epithelial zone of the mucosa. Under the microscope, biopsy samples from the intestine of a patient with Crohn's disease, will typically show mucosal inflammation, dominated by focal infiltration of neutrophils, which usually occurs above areas of lymphoid aggregates. If the neutrophils infiltrate the crypts, it can lead to inflammation, (crypititis), or abscess, (crypt abscess). In about half of all cases, granulomas, (which are aggregates of macrophage derivatives known as giant cells), are present, and these markers are considered to be very specific for Crohn's disease.
Note, however, that there is a type of microscopic colitis marked by giant cells, (in fact, it is called giant cell MC). Another possible marker of Crohn's disease is a change in the tissue type, (known as metaplasia). An example of metaplasia would be Paneth cell metaplasia, (which involves the development of Paneth cells. Again, though, the possibility of confusion exists, becasue there is a type of MC known as Paneth cell MC. Anyway, if any of these conditions are mentioned in the pathologist's report, then the possibility of Crohn's disease exists.
As to why doctors withhold information - who knows? Maybe it's a misguided attempt to cover their butt. More than a few members here have personally found that it's not uncommon for GI specialists to not bother to tell them that they had some type of microscopic colitis, which was clearly noted in the pathology report. Some say simply that, "nothing significant was found", and some refer to it as "IBS". I have a hunch that those doctors just don't understand the disease, and/or they aren't confident about their ability to properly treat it, and so they just assume that what patients don't know, won't hurt them.
In some cases, they consider it to be a benign disease, that will soon run it's course, without intervention. In most cases, that's far from correct, of course.In my own case, in the followup after the colonoscopy, my doctor failed to mention the fact that I had a stenosis in my sigmoid colon. About 5 years later, I had to have emergency abdominal surgery, to remove a section of my sigmoid colon, because of a blockage caused by that stenosis. After the surgery, I obtained a copy of the colonoscopy report that was done 5 years earlier, and sure enough, the stenosis was clearly described in the report. There was no pathology report associated with the colonoscopy exam, since he failed to take biopsy samples.
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 Kemah!
It occurs to me that since they had trouble getting the scope to pass, even the pediatric scope, they may not have collected a representative sample of biopsies from your entire colon. If they were only able to biopsy the sigmoid portion, you may have MC there, but perhaps something else further up that they couldn't reach? My friend's pre-teen daughter had a colonoscopy for suspected Crohn's (mom has Crohn's too). The scope couldn't make the turns so they gave up and she remains undiagnosed.
Regarding what the doctors say, both my inlaws were told they had "a little inflammation" on their colonoscopies, but "nothing to worry about."
My MIL has been complaining of gas, bloating and IBS for years. She started a GF diet 2 weeks ago and had amazing improvement.
It occurs to me that since they had trouble getting the scope to pass, even the pediatric scope, they may not have collected a representative sample of biopsies from your entire colon. If they were only able to biopsy the sigmoid portion, you may have MC there, but perhaps something else further up that they couldn't reach? My friend's pre-teen daughter had a colonoscopy for suspected Crohn's (mom has Crohn's too). The scope couldn't make the turns so they gave up and she remains undiagnosed.
Regarding what the doctors say, both my inlaws were told they had "a little inflammation" on their colonoscopies, but "nothing to worry about."
My MIL has been complaining of gas, bloating and IBS for years. She started a GF diet 2 weeks ago and had amazing improvement.
Dear Kemah,
Welcome from far away Hong Kong. I agree with the advice you have been given: to get a second opinion.
Microscopic Colitis (of which, CC is a subset) by definition is only discernible under a microscope. What you describe is discernible to the naked eye.....so is more then MC.
Wishing you all the best on your journey to better health. Keep reading here. IMHO it will help point the way.
Best, ant
Welcome from far away Hong Kong. I agree with the advice you have been given: to get a second opinion.
Microscopic Colitis (of which, CC is a subset) by definition is only discernible under a microscope. What you describe is discernible to the naked eye.....so is more then MC.
Wishing you all the best on your journey to better health. Keep reading here. IMHO it will help point the way.
Best, ant
----------------------------------------
"Softly, softly catchee monkey".....
"Softly, softly catchee monkey".....
Kemah,
Incidentally, the report you are referring to is probably the endoscopy report, written by your GI doctor. The report that contains all the "good stuff" is the pathology report, written by the pathologist who examined your biopsy samples, and the one who is supposed to make the diagnosis, (though some GI docs sometimes appear to ignore the pathologist's diagnosis).
Tex
Incidentally, the report you are referring to is probably the endoscopy report, written by your GI doctor. The report that contains all the "good stuff" is the pathology report, written by the pathologist who examined your biopsy samples, and the one who is supposed to make the diagnosis, (though some GI docs sometimes appear to ignore the pathologist's diagnosis).
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.
Erythema Nodosum
I know it is many years later but I wanted you to know that I also have E. nodosum. In fact it appears to be my early warning system for a flare of my CC. And it will definitely rage if I eat nightshade shades. Trouble is that treatment is normally NSAIDs and we know those can't be used. I've recently learned that a tight ace bandage around my shin all night really relieves the itch. Be aware that there are other symptoms associated with this disease. My family doctor was really helpful with the diagnosis. I think because he takes my CC very seriously. I hope you've found some help over the last years.