Hi. I had an appt. with my GI yesterday, a follow up for my first 6 weeks on Asacol. I told him that I go thru periods of intense nausea and fatigue, although since being on Asacol those symptoms have diminished a lot. Sometimes even if I am not nausesous I just have no appetite for days and days. He said that nausea is not a symptom of MC, that only diarrhea and cramping is. I know what I feel, nausea and no appetite for me is a huge symptom. It is frustrating and I dont know how to answer him when he tells me that what I am feeling is not what I should be feeling.
There are limitied choices of GI's here in Vermont. We do have more up in the Burlington area, but not a lot compared to other states.
He appeared to not want to listen to me. He said that a gluten free diet would make no difference, eventhough I told him of many on this forum who have had success. He smirked when I told him that I was trying to change my diet (i cannot go completely gluten free at this point, esp. since I am a vegetarian and my food options are getting pretty limitied, but I have eliminated about half of the gluten in diet) and acupuncture. He said he would see me in 6 weeks and that maybe then I would try entocort. It is frustrating. I am an intelligent person. I have had a 22 year career, own and am a responsible person. I know what I am talking about when I talk about my symptoms, i know what i am feeling.To have the doctor just dismiss what I said and say that is not part of MC is very frustrating. Have others run into this problem?
frustrating GI appt.
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Oh, Andi. (sigh)
I sure have. My PCP wanted to refer me to a pschychiatrist and told me it was probably IBS due to nerves. I went to a colon surgeon and she knows even less about MC than my GI guy does. And, my GI chuckled when I mentioned GF and said that it was very difficult and very expensive.
It is very frustrating that these docs do not understand the physical or emotional affects of MC. I'm really sick and tired of being sick and tired.
Some days it takes all that I have to get out of bed and go through my day.
Like today, I really can't stand being at work. I had to stop at McDonalds this morning to use the bathroom because I couldn't make the 30 minute drive in.
The docs act like it's "no big deal" it's just a little diarrhea, it cannot possible make you feel tired or achy. UGH!!!!!!!!!!!!!!!!
Sorry my post wasnt positive or encouraging. I just want you to know that I feel exactly like you do and that I totally understand!
It's like we get all excited about going to our GI appts thinking maybe, just maybe there is something new to try or to learn and then it ends up being a huge let-down.
I sure have. My PCP wanted to refer me to a pschychiatrist and told me it was probably IBS due to nerves. I went to a colon surgeon and she knows even less about MC than my GI guy does. And, my GI chuckled when I mentioned GF and said that it was very difficult and very expensive.
It is very frustrating that these docs do not understand the physical or emotional affects of MC. I'm really sick and tired of being sick and tired.
Some days it takes all that I have to get out of bed and go through my day.
Like today, I really can't stand being at work. I had to stop at McDonalds this morning to use the bathroom because I couldn't make the 30 minute drive in.
The docs act like it's "no big deal" it's just a little diarrhea, it cannot possible make you feel tired or achy. UGH!!!!!!!!!!!!!!!!
Sorry my post wasnt positive or encouraging. I just want you to know that I feel exactly like you do and that I totally understand!
It's like we get all excited about going to our GI appts thinking maybe, just maybe there is something new to try or to learn and then it ends up being a huge let-down.
Andi,
I'm sorry that your GI visit was so disappointing, but except for a few rare exceptions, his attitude is pretty much typical of the way that most GI docs view MC, and your experience was pretty much typical of what many of us have encountered. Those guys probably spend all of 30 seconds studying MC in med school, and then they sit there with a smirk on their face, and a smug, "know-it-all" attitude, and try to convince their patients that they are "experts", by attempting to demean any knowledge about the disease that the patient might have. Guys like that seem to hate patients who know more about their condition than they, (the GI docs), do, and they make no attempt to hide their feelings. I never went back to mine, for that reason.
As I've pointed out before, "real" doctors don't belittle their patients - they listen to them, and they work with them, and they learn from them, so that the relationship is mutually beneficial. It sounds like the only one benefiting from your appointment was the GI doc, (he collected his fee, whether he helped you or not).
Please don't let him depress you. He's a dumbass. Statistically, most of the "jerks" in the medical arena, are found among the ranks of GI doctors. That's just a bit of trivia that is virtually unknown, by those who do not have MC.
Tex
I'm sorry that your GI visit was so disappointing, but except for a few rare exceptions, his attitude is pretty much typical of the way that most GI docs view MC, and your experience was pretty much typical of what many of us have encountered. Those guys probably spend all of 30 seconds studying MC in med school, and then they sit there with a smirk on their face, and a smug, "know-it-all" attitude, and try to convince their patients that they are "experts", by attempting to demean any knowledge about the disease that the patient might have. Guys like that seem to hate patients who know more about their condition than they, (the GI docs), do, and they make no attempt to hide their feelings. I never went back to mine, for that reason.
As I've pointed out before, "real" doctors don't belittle their patients - they listen to them, and they work with them, and they learn from them, so that the relationship is mutually beneficial. It sounds like the only one benefiting from your appointment was the GI doc, (he collected his fee, whether he helped you or not).
Please don't let him depress you. He's a dumbass. Statistically, most of the "jerks" in the medical arena, are found among the ranks of GI doctors. That's just a bit of trivia that is virtually unknown, by those who do not have MC.
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.
here is the link
DISCLAIMER: I am not a doctor and don't play one on TV.
LDN July 18, 2014
Joan
LDN July 18, 2014
Joan
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Andi, Tex is right....that guy is a dumbass.......Your story is quite similar to many of ours, here. I ditched my GI after finding this site....he did little to help me (actually nothing would be more accurate). The only reason I didn't get in his face was because he did do a biopsy which led to my MC diagnosis.
Also I think fatigue is quite common with MC. It was in my case, but I had moderate malabsorbtion according to my EL results, so everything was just "passing through" quickly.
Try to focus on the wonderful seasonal conditions in your part of the country. We, on the left coast, don't get to enjoy our fall season. Mainly because we only have winter and summer. BTW, I enjoyed your post on that very much.
Hotrod
Also I think fatigue is quite common with MC. It was in my case, but I had moderate malabsorbtion according to my EL results, so everything was just "passing through" quickly.
Try to focus on the wonderful seasonal conditions in your part of the country. We, on the left coast, don't get to enjoy our fall season. Mainly because we only have winter and summer. BTW, I enjoyed your post on that very much.
Hotrod
Thanks everyone, it feels good just to know others have had the same experience. I just dont get it. It is like Tex said, they could learn a lot from listening to their patients. We are not textbooks, we are living, breathing humans who can give them first hand experiences. You would think they would be interested in hearing actual people speak. They prefer to believe a textbook over a true human experience. I dont understand that mind set.
I dont understand doctors who tell a patient "no, you cannot be feeling that, it is not a symptom". They make you feel like a child who knows nothing. From what I can tell, everyone on this forum is an intelligent, caring person. We have careers and run families and households. We certainly know if we feel nausea and fatigue.
Joan, thank you so much for the link, I will definitely take it to him when i see him next. I have one more appt. in a month, after that I dont think I need to waste my money on him.
My primary care doctor is great, she listens to me and really seems to care. Unfortunatly, as she tells me, she is not an "expert" on MC but I think I would rather see her than another GI.
I think that all specialists have an attitude. I have seen many orthopedic surgeons for athletic injuries over the years (i have taken it a bit easier as i have gotten older but in my youth i would run twice a day and then go for an 11 mile hike afterwards. I had LOTS of injuries over the years and have seen countless orthopedic surgeons). Every single one of them had an attitude as well. I think that primary care doctors (in my own experience) seem to be the most caring and willing to listen.
It just makes me angry to be treated like a child who does not even know what their own body is feeling. After my next appt. (mostly to show him what Joan sent) I dont think I will see him again.
I dont understand doctors who tell a patient "no, you cannot be feeling that, it is not a symptom". They make you feel like a child who knows nothing. From what I can tell, everyone on this forum is an intelligent, caring person. We have careers and run families and households. We certainly know if we feel nausea and fatigue.
Joan, thank you so much for the link, I will definitely take it to him when i see him next. I have one more appt. in a month, after that I dont think I need to waste my money on him.
My primary care doctor is great, she listens to me and really seems to care. Unfortunatly, as she tells me, she is not an "expert" on MC but I think I would rather see her than another GI.
I think that all specialists have an attitude. I have seen many orthopedic surgeons for athletic injuries over the years (i have taken it a bit easier as i have gotten older but in my youth i would run twice a day and then go for an 11 mile hike afterwards. I had LOTS of injuries over the years and have seen countless orthopedic surgeons). Every single one of them had an attitude as well. I think that primary care doctors (in my own experience) seem to be the most caring and willing to listen.
It just makes me angry to be treated like a child who does not even know what their own body is feeling. After my next appt. (mostly to show him what Joan sent) I dont think I will see him again.
Andi,
I know, GI appointments, or for that matter any doc appointments, make me so nervous and upset I literally feel like throwing up from the anxiety of going. Many doctors act personally offended by the idea of a patient trying to help herself bc they are the "experts." Well, guess what? You're the expert on your body, and you know what helps and what doesn't. And if it helps you, who cares if it's documented? Things aren't necessarily untrue just bc no MD has declared it so. When I was a kid, my mom became really allergic to chocolate. Every time she ate it, she broke out in a horrible, painful rash all over her chest that she had to keep cold compresses on. She went to the allergist, he did a skin test, and guess what? It said she wasn't allergic to chocolate. Fortunately, this doc wasn't a total jackass, so he said, if chocolate bothers you, don't eat it, and didn't try to convince her otherwise. But it just goes to show.
Have you tried bringing someone with you to your GI appointments, like your partner or a friend? I've found that sometimes they are a lot nicer and more understanding if I do that. It's like they find it harder to bully two people, and there's a witness to their nastiness. I stroke their egos a bit sometimes by telling them I just want there to be two sets of ears to listen and ask questions. I definitely hear you with the way they try to treat you like an idiot, too. I always want to bring in my CV and throw all my degrees and publications and stuff at their heads
I know that nausea is definitely a symptom for me, and (it seems like this would be a major "duh!" for a GI) if something's off in your tummy, both nausea and loss of appetite seem like perfectly normal reactions. Aargh.
Regarding the GF diet, I wanted to tell you that it is possible to do and travel. I love travelling, both for pleasure and work. It just requires some extra planning and thinking creatively. You can find plain rice, for example, almost anywhere, and I frequently pack my own food or go online to scope out the situation early. I was at a conference the other week where I knew they would be serving boxed lunches (ick!), so I just packed my own and pulled it out. People were actually jealous bc the boxed lunches were so yucky. Wanted to say, too, that I have had no luck on Entocort. You might have a different experience, but it's certainly not the cure-all your doctor and mine seem to think.
Keep fighting the good fight.
Big hugs,
Courtney
I know, GI appointments, or for that matter any doc appointments, make me so nervous and upset I literally feel like throwing up from the anxiety of going. Many doctors act personally offended by the idea of a patient trying to help herself bc they are the "experts." Well, guess what? You're the expert on your body, and you know what helps and what doesn't. And if it helps you, who cares if it's documented? Things aren't necessarily untrue just bc no MD has declared it so. When I was a kid, my mom became really allergic to chocolate. Every time she ate it, she broke out in a horrible, painful rash all over her chest that she had to keep cold compresses on. She went to the allergist, he did a skin test, and guess what? It said she wasn't allergic to chocolate. Fortunately, this doc wasn't a total jackass, so he said, if chocolate bothers you, don't eat it, and didn't try to convince her otherwise. But it just goes to show.
Have you tried bringing someone with you to your GI appointments, like your partner or a friend? I've found that sometimes they are a lot nicer and more understanding if I do that. It's like they find it harder to bully two people, and there's a witness to their nastiness. I stroke their egos a bit sometimes by telling them I just want there to be two sets of ears to listen and ask questions. I definitely hear you with the way they try to treat you like an idiot, too. I always want to bring in my CV and throw all my degrees and publications and stuff at their heads
I know that nausea is definitely a symptom for me, and (it seems like this would be a major "duh!" for a GI) if something's off in your tummy, both nausea and loss of appetite seem like perfectly normal reactions. Aargh.
Regarding the GF diet, I wanted to tell you that it is possible to do and travel. I love travelling, both for pleasure and work. It just requires some extra planning and thinking creatively. You can find plain rice, for example, almost anywhere, and I frequently pack my own food or go online to scope out the situation early. I was at a conference the other week where I knew they would be serving boxed lunches (ick!), so I just packed my own and pulled it out. People were actually jealous bc the boxed lunches were so yucky. Wanted to say, too, that I have had no luck on Entocort. You might have a different experience, but it's certainly not the cure-all your doctor and mine seem to think.
Keep fighting the good fight.
Big hugs,
Courtney
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Celiac 07/08
Andi,
I had to go to work and make a delivery, so I didn't get to put everything in my response that I wanted. While it is true that some people with MC never, (or rarely), have nausea/vomiting as a symptom, for many of us here, it is, (or was), a regular problem.
As miserable and inconvenient as the D was, I never let it keep me from working, (except while I was actually answering the call of nature, of course). Some days I probably should have stayed home, (because I ended up having an "accident"), but I mostly just worked around the D. Nausea, on the other hand, is a different kind of cat. There were many days when I could not even go to work because it was so bad, (if I tried to work, or even move around, I would be vomiting on a fairly regular basis), and on the days when it wasn't quite so bad, I would go to work, but then I would often have to go sit or lie down, until the worst had passed. So, for me, at least, the nausea affected my work schedule much more than the D.
Some doctors will also argue that pain is not one of the symptoms of MC, and for some patients, that appears to be true. For the doctors who insist that none of us can have that symptom, though, I only wish that they could have the pleasure of experiencing it. Whenever I was severely bloated, the pain was constant, and bad enough to keep me awake at night. Occasionally, though, a cramp would come along with pain so intense that if I were standing at the time, it would literally almost bring me to my knees. It would usually cause me to double over, and I would "freeze" until it had passed, before I went on with whatever I was doing. In past discussions, some members have compared it with the pain of childbirth.
I think that you are probably correct about specialists in general, (though I have trouble visualizing how any of them could match the arrogance of some GI docs, LOL). I think the problem lies in the fact that when they get that piece of paper that certifies them as an "expert", (meaning that their testimony will hold up in a court of law, or anywhere else - except maybe this board, LOL), that exalted position means the world to them, and how dare some mere mortal challenge their "hard-earned" knowledge. Most GPs, on the other hand, realize that they do not know everything that there is to know about every medical issue, so they are much easier to work with, as a general rule, when dealing with "undocumented" health issues. Specialists already know it all, so they see no point in wasting their time listening to anyone who is not their peer, which probably explains why they are so slow to adopt new technology.
Tex
I had to go to work and make a delivery, so I didn't get to put everything in my response that I wanted. While it is true that some people with MC never, (or rarely), have nausea/vomiting as a symptom, for many of us here, it is, (or was), a regular problem.
As miserable and inconvenient as the D was, I never let it keep me from working, (except while I was actually answering the call of nature, of course). Some days I probably should have stayed home, (because I ended up having an "accident"), but I mostly just worked around the D. Nausea, on the other hand, is a different kind of cat. There were many days when I could not even go to work because it was so bad, (if I tried to work, or even move around, I would be vomiting on a fairly regular basis), and on the days when it wasn't quite so bad, I would go to work, but then I would often have to go sit or lie down, until the worst had passed. So, for me, at least, the nausea affected my work schedule much more than the D.
Some doctors will also argue that pain is not one of the symptoms of MC, and for some patients, that appears to be true. For the doctors who insist that none of us can have that symptom, though, I only wish that they could have the pleasure of experiencing it. Whenever I was severely bloated, the pain was constant, and bad enough to keep me awake at night. Occasionally, though, a cramp would come along with pain so intense that if I were standing at the time, it would literally almost bring me to my knees. It would usually cause me to double over, and I would "freeze" until it had passed, before I went on with whatever I was doing. In past discussions, some members have compared it with the pain of childbirth.
I think that you are probably correct about specialists in general, (though I have trouble visualizing how any of them could match the arrogance of some GI docs, LOL). I think the problem lies in the fact that when they get that piece of paper that certifies them as an "expert", (meaning that their testimony will hold up in a court of law, or anywhere else - except maybe this board, LOL), that exalted position means the world to them, and how dare some mere mortal challenge their "hard-earned" knowledge. Most GPs, on the other hand, realize that they do not know everything that there is to know about every medical issue, so they are much easier to work with, as a general rule, when dealing with "undocumented" health issues. Specialists already know it all, so they see no point in wasting their time listening to anyone who is not their peer, which probably explains why they are so slow to adopt new technology.
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.
Andi;
I had a similar situation with my GI. I spent 10 weeks living and working in Honduras, which was where I was when I originally got sick. Once I saw my GI, and several tests came back without a diagnosis, he told me I had "travelers diarrhea". I told him he was "full of it" - I really was frustrated and was quite rude to him at times. But, I was always honest!
Once he called me with my diagnosis, he informed me there is no cure and I would "learn to live with it" - yea, right (I was having D usually 20 times a day!)
When I found this board and learned about the GF diet, I told him about that and he informed me it would not help me. After several visits, and asking about going GF, he told me "I can guarantee it will NOT help you. But, it also won't hurt you, so if it makes you feel better, go right ahead and try it." Well, as you know, I am gluten free and symptom free (with the one exception of last month's flare!) Anyway, now he applauds me for doing so well, following my diet so well and for getting my symptoms under control without his help. When I first let him know the diet was helping me, he said he would begin recommending it for MC. On a later visit, he told me that I was the only patient he has who got releif from the diet, he said that "even my patients who are able to stay strictly on a GF diet for a week or 2 see no relief". Well, I let him know it often takes lots longer than that.
Today, he is much more open and recommends a strict GF diet to his patients. Sometimes it just takes being able to prove and teach them. Although, I also know that many are not "teachable" - guess I'm lucky, in a way!
Stay here, let us know your frustrations as well as your successes! We understand, and we love you!
G'ma Mary
I had a similar situation with my GI. I spent 10 weeks living and working in Honduras, which was where I was when I originally got sick. Once I saw my GI, and several tests came back without a diagnosis, he told me I had "travelers diarrhea". I told him he was "full of it" - I really was frustrated and was quite rude to him at times. But, I was always honest!
Once he called me with my diagnosis, he informed me there is no cure and I would "learn to live with it" - yea, right (I was having D usually 20 times a day!)
When I found this board and learned about the GF diet, I told him about that and he informed me it would not help me. After several visits, and asking about going GF, he told me "I can guarantee it will NOT help you. But, it also won't hurt you, so if it makes you feel better, go right ahead and try it." Well, as you know, I am gluten free and symptom free (with the one exception of last month's flare!) Anyway, now he applauds me for doing so well, following my diet so well and for getting my symptoms under control without his help. When I first let him know the diet was helping me, he said he would begin recommending it for MC. On a later visit, he told me that I was the only patient he has who got releif from the diet, he said that "even my patients who are able to stay strictly on a GF diet for a week or 2 see no relief". Well, I let him know it often takes lots longer than that.
Today, he is much more open and recommends a strict GF diet to his patients. Sometimes it just takes being able to prove and teach them. Although, I also know that many are not "teachable" - guess I'm lucky, in a way!
Stay here, let us know your frustrations as well as your successes! We understand, and we love you!
G'ma Mary
Those who are not part of the solution, are part of the problem.