I just had my third colonoscopy in 5 years two weeks ago because I have been so sick for so long, and the 5 year old diagnosis of MC was made by another doctor, so my doctor wanted to confirm and see if there was anything else going on (prep was particularly awful this time and the afterwards was awful too with all the bleeding from the many biopsies). I've been on entocort now for about 3 months and I would say it's only making me marginally better. I've been DF, GF, SF, CF, NF, and EF since June. Enterolab testing came back with all negatives.
So, not Crohn's. Not colitis.
And then, I found out yesterday - no sign of MC.
I am beyond depressed. If my doctor tells me it's IBS I am going to jump off a roof!!
I am annoyed bc my dr (who I thought was different) had her secretary call me to give me the news and then asked me to schedule an appointment to come in and talk about next steps. She had to know how bummed I would be. I know maybe I should be grateful that I don't have MC - but I would really like to know what's wrong with me (for example, just came from my 10th trip to the bathroom today). My doctor doesn't take insurance, and each appointment is $250, but I made a decision that she was worth it. I really don't want to spend another $250 for her to tell me I am just going to have to taper off entocort and just take pepto-bismol every day when I am sick.
I did send my MRT testing kit in yesterday but I am sure that is not going to be helpful either. Another $500. It's now been over $3000 to find out nothing.
I am sorry for the complaining. I would really like to know what is wrong with me. And now it looks like I'll be leaving this board - it's been very helpful. Thank you all so, so much for all of your support and encouragment.
Lisa
at a serious low point
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barbaranoela
- Emperor Penguin
- Posts: 5394
- Joined: Wed May 25, 2005 6:11 pm
- Location: New York
Lisa---sorry if I sound harsh=but to me it sounds like ya doc. likes ripping U off with those outrageous fees and coming up with ZILCH!!!!!
I had been seeing a doctor for my loss of smell and taste--and as U---I began to !!FEEL!! that I was being ripped off cus we were getting no place --asked if she ever cured anyone with a loss of taste and smell and she finally said *well not really*
sometimes we gotta get *burnt* before we realize it and then take off--
sorry U are leaving-----but I am hopping U pop in to view all post
Barbara
I had been seeing a doctor for my loss of smell and taste--and as U---I began to !!FEEL!! that I was being ripped off cus we were getting no place --asked if she ever cured anyone with a loss of taste and smell and she finally said *well not really*
sometimes we gotta get *burnt* before we realize it and then take off--
sorry U are leaving-----but I am hopping U pop in to view all post
Barbara
the fruit of the spirit is love, joy, peace, patience, kindness, goodness, faithfulness and self-control
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draperygoddess
- Rockhopper Penguin
- Posts: 558
- Joined: Mon Aug 29, 2011 6:49 am
- Location: Tennessee
Oh, Lisa, I'm so sorry. A diagnosis, even a bad one, is better than not knowing what's wrong with you and if it will ever get better. Have you thought about having your biopsies sent for a second opinion? That's what I'm doing with mine.
Please don't leave the forum yet! It sounds like you need encouragement right now, and diagnosis or not, these people understand how you feel.
Praying for you to find some answers soon!
Please don't leave the forum yet! It sounds like you need encouragement right now, and diagnosis or not, these people understand how you feel.
Praying for you to find some answers soon!
Cynthia
"Can we fix it? YES WE CAN!" -Bob the Builder
"Can we fix it? YES WE CAN!" -Bob the Builder
Lisa,
How frustrating - please do get hold of your pathology report from your colonoscopy. It could contain something that your doctor doesn't consider significant, but Tex in particular is very good at reading the language pathologists use and seeing the gaps between what they say and what doctors sometimes read. (I do agree, btw, that for $250/visit, your doctor could get on the phone herself, even if she has her assistant make the call - and if she has some awesome ideas to share with you about treatment options, it seems a little harsh that you have to spend another $250 to find out what they are.)
In the meantime, I hope you'll stay on the board, at least until you're feeling better or find a new diagnosis and another helpful forum.
And I hope you get some relief, soon, from the relentless symptoms.
Sara
How frustrating - please do get hold of your pathology report from your colonoscopy. It could contain something that your doctor doesn't consider significant, but Tex in particular is very good at reading the language pathologists use and seeing the gaps between what they say and what doctors sometimes read. (I do agree, btw, that for $250/visit, your doctor could get on the phone herself, even if she has her assistant make the call - and if she has some awesome ideas to share with you about treatment options, it seems a little harsh that you have to spend another $250 to find out what they are.)
In the meantime, I hope you'll stay on the board, at least until you're feeling better or find a new diagnosis and another helpful forum.
And I hope you get some relief, soon, from the relentless symptoms.
Sara
Thanks all. My doctor did actually just call me and we decided I would come see her when I get my MRT results back. I will call her office and get a copy of the pathology report now. I doubt it will be helpful but you never know, I guess. I am very blue right now - I appreciate all of your support.
Lisa
Lisa
Hi Lisa,
I'm sorry to hear the latest developments. I'm not saying that your doctor is totally incompetent, but I believe that either she or the pathologist who analyzed your biopsy samples, are either misinterpreting, or overlooking something important in your pathology report. It's virtually impossible to have the kind of symptoms that you're experiencing, without having the histologic markers of whatever is causing your problems. There is a reason why you are having symptoms, and whatever is causing those symptoms has left evidence in your intestines. Your doctor is apparently overlooking that evidence.
A few questions: Were any of the biopsies taken from your terminal ileum, (the lower part of the small intestine)? And have you had any biopsies taken from your upper small intestine, (the duodenum or jejunum), during the past few years. If so, exactly what did they show?
Has your doctor done a culture for C. diff? Unless you have C. diff, that many trips to the bathroom in less than half a day, almost certainly has to be due to MC. Nothing else, short of botulism, is likely to cause that kind of D. As Sara mentioned, the correct interpretation of your pathology report probably would shed some light on the situation.
Bleeding due to biopsies should be minimal. If you have lost more than a few tablespoons of blood, or if the bleeding continues, or if you have any unusual, severe pain, or fever, something else may be wrong, and you may need to check with your doctor.
Tex
I'm sorry to hear the latest developments. I'm not saying that your doctor is totally incompetent, but I believe that either she or the pathologist who analyzed your biopsy samples, are either misinterpreting, or overlooking something important in your pathology report. It's virtually impossible to have the kind of symptoms that you're experiencing, without having the histologic markers of whatever is causing your problems. There is a reason why you are having symptoms, and whatever is causing those symptoms has left evidence in your intestines. Your doctor is apparently overlooking that evidence.
A few questions: Were any of the biopsies taken from your terminal ileum, (the lower part of the small intestine)? And have you had any biopsies taken from your upper small intestine, (the duodenum or jejunum), during the past few years. If so, exactly what did they show?
Has your doctor done a culture for C. diff? Unless you have C. diff, that many trips to the bathroom in less than half a day, almost certainly has to be due to MC. Nothing else, short of botulism, is likely to cause that kind of D. As Sara mentioned, the correct interpretation of your pathology report probably would shed some light on the situation.
Bleeding due to biopsies should be minimal. If you have lost more than a few tablespoons of blood, or if the bleeding continues, or if you have any unusual, severe pain, or fever, something else may be wrong, and you may need to check with your doctor.
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 Lisa,
I can definately relate to what your going threw. Last year I was so sick....vomiting, diarrhea (aprox 15x a day) cramps, bloating, nausea and even a fever! I couldnt get out of bed! I saw 4 different Doc with all the test and each and everyone of them came up with nothing! It had become a nightmare....I was so fustrated, angry and most of all DEPRESSED! I tried EVEYTHING, pepto, imodium and even compazine suppository! NOTHING WORKED!!! The beginning of this year I decided to try one more doc. He came highly recommended (I am a nurse and the MD I work for was very good friends with him) so I figured what the hell! I went to his office and what a totally different experience....after giving him ALL my health records...he looked at me and said your here now and we will get to the bottom of this, together.
After all of his test, he called me and asked if I could come to his offfice the following day to discuss my health and because this was and on going illness there would be NO charge for this visit! Well I went and he did tell me that I do have MC. I asked him why with all the other test didnt they show anything! This is what he said to me" When you have MC the only way to Dx it is with biopsies of the colon! And those biopsies have to be in the infected area, if not it the test will be inconclusive)! I had 18!!!!! Out of those 18 only 7 dx the problem!
Please dont give up! If I were you I would also stay here on this site, we are ALL here for the same reason and All looking for a GREAT HEALTHY GUT!!! If not for any other reason I enjoy coming on here because I feel like there is someone else out there with the same things I am going through and I am not ALONE ANYMORE!!!!
Good Luck,
With Lots of Health and Happiness
Robin
I can definately relate to what your going threw. Last year I was so sick....vomiting, diarrhea (aprox 15x a day) cramps, bloating, nausea and even a fever! I couldnt get out of bed! I saw 4 different Doc with all the test and each and everyone of them came up with nothing! It had become a nightmare....I was so fustrated, angry and most of all DEPRESSED! I tried EVEYTHING, pepto, imodium and even compazine suppository! NOTHING WORKED!!! The beginning of this year I decided to try one more doc. He came highly recommended (I am a nurse and the MD I work for was very good friends with him) so I figured what the hell! I went to his office and what a totally different experience....after giving him ALL my health records...he looked at me and said your here now and we will get to the bottom of this, together.
After all of his test, he called me and asked if I could come to his offfice the following day to discuss my health and because this was and on going illness there would be NO charge for this visit! Well I went and he did tell me that I do have MC. I asked him why with all the other test didnt they show anything! This is what he said to me" When you have MC the only way to Dx it is with biopsies of the colon! And those biopsies have to be in the infected area, if not it the test will be inconclusive)! I had 18!!!!! Out of those 18 only 7 dx the problem!
Please dont give up! If I were you I would also stay here on this site, we are ALL here for the same reason and All looking for a GREAT HEALTHY GUT!!! If not for any other reason I enjoy coming on here because I feel like there is someone else out there with the same things I am going through and I am not ALONE ANYMORE!!!!
Good Luck,
With Lots of Health and Happiness
Robin
If you can believe it, the fedex plane that I sent my MRT blood on yesterday had mechanical difficulties and the blood was not delivered in the required time frame. I have to do it again, which involves finding a place to take my blood and probably paying out of pocket this time. I am out of words.
Thanks all.
Thanks all.
Robin,
You have found a GI specialist who appears to truly understand how to diagnose the disease, and how to treat his patients with respect. Kudos to him. If he also knows how to properly treat the disease, I'll have to raise my rating for him to "awesome".
Lisa,
What a bummer. That's incredibly bad luck, and IMO, Fedex owes you the cost of that blood draw, at the very least, (though I would be surprised if they offer to cover it).
I sure hope your luck improves soon.
Tex
You have found a GI specialist who appears to truly understand how to diagnose the disease, and how to treat his patients with respect. Kudos to him. If he also knows how to properly treat the disease, I'll have to raise my rating for him to "awesome".
Lisa,
What a bummer. That's incredibly bad luck, and IMO, Fedex owes you the cost of that blood draw, at the very least, (though I would be surprised if they offer to cover it).
I sure hope your luck improves soon.
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.
She did do tons of biopsies - I think she said 25 and she did them all over. She is a very good doctor. I will get the pathology report and post it. Now she wants me to taper my entocort, which I guess is okay since it only makes me feel marginally better, but I am nervous about that too. But I have no choice, because she thinks I shouldn't be on them long term and I have been on for 3 months. And I think I may have been able to convince her had I been diagnosed with MC, but now.....
Oh, Lisa, what a run of bad luck you're having. In health as in everything luck is the "unfair" factor - we can do everything right and still hit some rough patches of road, and you're having that experience far too much.
(Robin - your doctor sounds wonderful... I look forward to hearing more about how your treatment plan is going and what's working.)
Lisa, I know what you mean about being out of words. I'm sending wordless, healing, hopeful thoughts your way for things looking up for you, on all fronts.
(Robin - your doctor sounds wonderful... I look forward to hearing more about how your treatment plan is going and what's working.)
Lisa, I know what you mean about being out of words. I'm sending wordless, healing, hopeful thoughts your way for things looking up for you, on all fronts.
Lisa,
I'm so sorry for your misfortunes. I agree that Fed Ex should pay for your new blood work, though it wasn't expensive when I paid out of pocket for it - $10 for the blood to be drawn and delivered. That was in March, 2010 and I recall that three vials were sent for 150 tests at that time.
There are several of us on the board who have been on the board who have taken Entocort for more than 4 years (I'm one of them) without any problems. I think your doctor is overly concerned about being on it for more than 3 months. However, going off of it because it isn't helping is understandable.
Gloria
I'm so sorry for your misfortunes. I agree that Fed Ex should pay for your new blood work, though it wasn't expensive when I paid out of pocket for it - $10 for the blood to be drawn and delivered. That was in March, 2010 and I recall that three vials were sent for 150 tests at that time.
There are several of us on the board who have been on the board who have taken Entocort for more than 4 years (I'm one of them) without any problems. I think your doctor is overly concerned about being on it for more than 3 months. However, going off of it because it isn't helping is understandable.
Gloria
You never know what you can do until you have to do it.
Lisa,
Just curious - did your doctor also do tryptase stain for mast cells on those biopsies? Some of us who don't fit the typical MC profile fall into that category. Also, do you know of you are IgA deficient (since all Enterolabs came back negative)? I'm sorry if some of this has already been discussed as I'm busy and not on the board much these days.
Hang in there and try to work the emotional aspect of things. I know that's difficult when you are in the place that you are, but research has shown that the negative thoughts add to the stress, which add to the symptoms we experience. Maybe some counseling with someone who specializes in chronic health issues could be of help. For me the turning point was MRT but I also worked really hard on the emotional/mental aspect. We talk about this only occasionally on this forum, but it's a key factor in helping the healing process.
Shooting good thoughts your way.
Mary Beth
Just curious - did your doctor also do tryptase stain for mast cells on those biopsies? Some of us who don't fit the typical MC profile fall into that category. Also, do you know of you are IgA deficient (since all Enterolabs came back negative)? I'm sorry if some of this has already been discussed as I'm busy and not on the board much these days.
Hang in there and try to work the emotional aspect of things. I know that's difficult when you are in the place that you are, but research has shown that the negative thoughts add to the stress, which add to the symptoms we experience. Maybe some counseling with someone who specializes in chronic health issues could be of help. For me the turning point was MRT but I also worked really hard on the emotional/mental aspect. We talk about this only occasionally on this forum, but it's a key factor in helping the healing process.
Shooting good thoughts your way.
Mary Beth
"If you believe it will work out, you'll see opportunities. If you believe it won't you will see obstacles." - Dr. Wayne Dyer
Mary Beth - I don't know about the mast cell issue. I hope I can get that info when I get the pathology report - it should be on there, right? I have asked my doc about that, but she doesn't think that 's it. Though she could be wrong, obviously. If she didn't do that during the colonoscopy is there a way to do that without doing another one?
Here is my allergist's report which leads me to believe I am not IgA deficient:
It looks like my IgA serum was 253 mg/dl (81-463), gliadin ab (IgA) was 6 U/ml (<11), and my tissue transglutaminase ab IgA was <3 U/ml (<5) - from 2010.
Thanks. Lisa
Here is my allergist's report which leads me to believe I am not IgA deficient:
It looks like my IgA serum was 253 mg/dl (81-463), gliadin ab (IgA) was 6 U/ml (<11), and my tissue transglutaminase ab IgA was <3 U/ml (<5) - from 2010.
Thanks. Lisa