Morning Lisa,
I 110% agree with what Tex has said. As I have mentioned to you in PMs - this is not an instant cure (really no cure) disease. IBS does not exist and when will you get that?!
Please, give things time. 1A month on something is not instant in its workings.
If you want a 2nd colonoscopy, then get one.
Sorry, I am having a bad day and a bad 10+ years with this disease. You have to work through it and your doctor sure has more crap in his system than most of us.
Maggie
HELP ME
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
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MaggieRedwings
- King Penguin
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Joefnh
- Rockhopper Penguin
- Posts: 2478
- Joined: Wed Apr 21, 2010 8:25 pm
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Lisa I can certainly understand your frustration, this is one of those diseases that progress is measured in months not days or weeks. Certainly you have had a tough time in tolerating the first line meds for this which does make dealing with MC that much harder. I cannot speak knowledgeably about sulfasalazine or even if it's the right med for you.
It has always surprised me how individual this disease is. We all have many commonalities but at the same time what works for one many times does not work for another. For me patience has been one of the hardest things to deal with with MC. In our lives we are used to taking a pill and feeling better in just 20 or 30 minutes, we are used to watching a TV show where all the worlds ills are solved in 30 minutes.
We live in an instant society where it will be there in 30 minutes or less or its free
... This is a tough transition to understanding what patience truly is, especially when you feel so lousy. When I first started down the same path you are on now, I remember a few posts like yours, why am I not feeling better yet.
If a second colonoscopy will be beneficial certainly consider it, but as pointed out you already have the first one and you fit the symptoms 'clinically'... if it walks like a duck and quacks like a duck...
For most of the members here finding relief from this has taken months and for some of them years of fine tuning the diet and the meds that work best for them. Remember there is no cure for this, you will be finding what works best for you, we are all different.
Finding your way through this path can be tough and frustrating, but that's what this group is here for, we have all been there and done that. Feel free to open up here, but remember this will also take patience on your part and perseverance. This may mean looking for a different GI doctor, I know its a pain, but you certainly would not be the first here to have to go through 2 or 3 doctors to find the one that works best with you.
One of the famous sayings by a board member 'Gabes-Apg' is "There is no right way or wrong way, there is your way" pretty much sums it up.
Hang in there Lisa and never stop working to get well.
Take Care
--Joe
It has always surprised me how individual this disease is. We all have many commonalities but at the same time what works for one many times does not work for another. For me patience has been one of the hardest things to deal with with MC. In our lives we are used to taking a pill and feeling better in just 20 or 30 minutes, we are used to watching a TV show where all the worlds ills are solved in 30 minutes.
We live in an instant society where it will be there in 30 minutes or less or its free
... This is a tough transition to understanding what patience truly is, especially when you feel so lousy. When I first started down the same path you are on now, I remember a few posts like yours, why am I not feeling better yet.If a second colonoscopy will be beneficial certainly consider it, but as pointed out you already have the first one and you fit the symptoms 'clinically'... if it walks like a duck and quacks like a duck...
For most of the members here finding relief from this has taken months and for some of them years of fine tuning the diet and the meds that work best for them. Remember there is no cure for this, you will be finding what works best for you, we are all different.
Finding your way through this path can be tough and frustrating, but that's what this group is here for, we have all been there and done that. Feel free to open up here, but remember this will also take patience on your part and perseverance. This may mean looking for a different GI doctor, I know its a pain, but you certainly would not be the first here to have to go through 2 or 3 doctors to find the one that works best with you.
One of the famous sayings by a board member 'Gabes-Apg' is "There is no right way or wrong way, there is your way" pretty much sums it up.
Hang in there Lisa and never stop working to get well.
Take Care
--Joe
Joe
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irisheyes13
- Adélie Penguin
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- Location: Pittsburgh, PA, United States
Hi Lisa,
Sorry to hear you have been feeling so bad for so long. I'm new here so I don't know how much help I can be but I was diagnosed 7 years ago with MC and went through most every medication used to treat this disease. I had negative reactions with every single one of them with the exception of steroids. I got very sick with nausea, vomiting, high white cell counts and several infections. It's not fun going through all the trial and error and feeling even worse from the side effects of meds in addition to the debilitating symptoms of MC. The one word of advice that I can give you is: Do not get frustrated and give up and walk away from it and think you can just "deal" with it. That was what I chose to do and can only imagine the damage I have caused to my immune system because of it. The MC is much worse now along with fibromyalgia throughout my entire body.
I hope you are able to find a physician you are comfortable with. Having been on antibiotics can really take a toll on your already weakened intestines.
Hope you are feeling better soon.
Sorry to hear you have been feeling so bad for so long. I'm new here so I don't know how much help I can be but I was diagnosed 7 years ago with MC and went through most every medication used to treat this disease. I had negative reactions with every single one of them with the exception of steroids. I got very sick with nausea, vomiting, high white cell counts and several infections. It's not fun going through all the trial and error and feeling even worse from the side effects of meds in addition to the debilitating symptoms of MC. The one word of advice that I can give you is: Do not get frustrated and give up and walk away from it and think you can just "deal" with it. That was what I chose to do and can only imagine the damage I have caused to my immune system because of it. The MC is much worse now along with fibromyalgia throughout my entire body.
I hope you are able to find a physician you are comfortable with. Having been on antibiotics can really take a toll on your already weakened intestines.
Hope you are feeling better soon.
Kelly
Believe deep down in your heart that you are destined to do great things~ Joe Paterno
Believe deep down in your heart that you are destined to do great things~ Joe Paterno
Ant,
Yes, I believe that what is described as MC is not really rare, at all - it's when it teams up with the leaky gut syndrome, and/or various other autoimmune issues, that it becomes a major problem. Very, very few of us have classic MC, that is, very few of us have symptoms that are limited to the symptoms listed in the original medical description. Most of us have numerous additional symptoms, due to satellite, (related), issues.
Tex
Yes, I believe that what is described as MC is not really rare, at all - it's when it teams up with the leaky gut syndrome, and/or various other autoimmune issues, that it becomes a major problem. Very, very few of us have classic MC, that is, very few of us have symptoms that are limited to the symptoms listed in the original medical description. Most of us have numerous additional symptoms, due to satellite, (related), issues.
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! As you know I had the same bad reactions with endocort. I was then put on asacol hd which 'cured' me. I would say it took about 3 weeks to work. I weaned myself off and I am totally off of it now for a month and have had no issues. I am eating regular food again for the past month and have had no problems. I have totally given up my diet coke and diet iced tea and caffeine. I was drinking a lot and I mean a lot of it and I am starting to believe that this is what caused it all.
Mary Jo
Lisa,
I apologize if we sometimes sound frustrated, but you have to realize that we've been through what you are experiencing, and so we know that impatience will gain you nothing but more frustration and unnecessary anxiety and stress, which will just tend to make the symptoms worse. You cannot rush the healing process, no matter how many colonoscopies, or how many drugs you throw at it. Your body is going to recover at it's own rate, depending, of course, on how you are treating it. Obviously, since you doubt your original diagnosis, you are still in the denial stage, so you haven't even really acknowledged that you have the disease, so that you can begin to cope with it.
If your doctor wants to schedule a colonoscopy every month, so that he can learn a little about the disease, then we, (the members of this board), don't have a problem with that, so long as it's agreeable with you and your doctor - we don't care, we just want to see you making steady progress toward remission, in the best way that you can find.
Probably the part that we find to be the most frustrating, is the way that you go to your doctor, and receive a prescribed treatment, and then when it doesn't work as you had hoped, instead of asking your doctor why it hasn't worked, you ask us. When we give you our best opinions as to why it didn't work, (or how long recovery should take, or whether or not you should have another colonoscopy, because your doctor doesn't know what he's doing, or whatever), you pretty much ignore what we say, and do what your doctor recommends, anyway.
Please don't misunderstand me, there's nothing wrong with doing what your doctor recommends, assuming that he knows what he's doing, and/or you trust him, but when his treatments don't help, you should be nagging him about that, not us. He's the one earning the big bucks. We're not here to compete with your doctor. We're here to try to improve the life of everyone with this disease, as best we can, whether they are following a doctor's treatment plan, or their own. And unlike your doctor, none of us derive a penny from the support that we provide here. We offer our support, our experience, and our insight, on the basis of unconditional love and empathy for anyone else who has to deal with the miseries caused by this disease.
My point is, just because our support is free, and your doctor's advice is not, does not mean that the support provided here is worth any less that what the highest paid GI docs charge for their services, (obviously, it doesn't mean that it's worth any more, either, of course). While I'm not suggesting that GI docs don't care about the welfare of their patients, at the end of the day, they are mercenaries, and we are volunteers. That means that our only possible reward, is the satisfaction that we can derive from helping a fellow MC sufferer, in some small way.
It's painfully obvious that you had your mind made up, as soon as your doctor suggested another colonoscopy, so I can't help but wonder why you have been wasting our time here, flogging a dead horse. It's not like we don't have anything better to do with our time, because most of us are short of time already, and we could make good use of a lot more hours each day, so we really can't afford to be wasting the precious time that we have available to us. We really would like to help you, but you give the impression that you don't really want help from us, (since you seem to continue to ignore what we say, whenever you make any decisions about your treatment). Now you know why we are feeling just as frustrated as you are.
Tex
I apologize if we sometimes sound frustrated, but you have to realize that we've been through what you are experiencing, and so we know that impatience will gain you nothing but more frustration and unnecessary anxiety and stress, which will just tend to make the symptoms worse. You cannot rush the healing process, no matter how many colonoscopies, or how many drugs you throw at it. Your body is going to recover at it's own rate, depending, of course, on how you are treating it. Obviously, since you doubt your original diagnosis, you are still in the denial stage, so you haven't even really acknowledged that you have the disease, so that you can begin to cope with it.
If your doctor wants to schedule a colonoscopy every month, so that he can learn a little about the disease, then we, (the members of this board), don't have a problem with that, so long as it's agreeable with you and your doctor - we don't care, we just want to see you making steady progress toward remission, in the best way that you can find.
Probably the part that we find to be the most frustrating, is the way that you go to your doctor, and receive a prescribed treatment, and then when it doesn't work as you had hoped, instead of asking your doctor why it hasn't worked, you ask us. When we give you our best opinions as to why it didn't work, (or how long recovery should take, or whether or not you should have another colonoscopy, because your doctor doesn't know what he's doing, or whatever), you pretty much ignore what we say, and do what your doctor recommends, anyway.
Please don't misunderstand me, there's nothing wrong with doing what your doctor recommends, assuming that he knows what he's doing, and/or you trust him, but when his treatments don't help, you should be nagging him about that, not us. He's the one earning the big bucks. We're not here to compete with your doctor. We're here to try to improve the life of everyone with this disease, as best we can, whether they are following a doctor's treatment plan, or their own. And unlike your doctor, none of us derive a penny from the support that we provide here. We offer our support, our experience, and our insight, on the basis of unconditional love and empathy for anyone else who has to deal with the miseries caused by this disease.
My point is, just because our support is free, and your doctor's advice is not, does not mean that the support provided here is worth any less that what the highest paid GI docs charge for their services, (obviously, it doesn't mean that it's worth any more, either, of course). While I'm not suggesting that GI docs don't care about the welfare of their patients, at the end of the day, they are mercenaries, and we are volunteers. That means that our only possible reward, is the satisfaction that we can derive from helping a fellow MC sufferer, in some small way.
It's painfully obvious that you had your mind made up, as soon as your doctor suggested another colonoscopy, so I can't help but wonder why you have been wasting our time here, flogging a dead horse. It's not like we don't have anything better to do with our time, because most of us are short of time already, and we could make good use of a lot more hours each day, so we really can't afford to be wasting the precious time that we have available to us. We really would like to help you, but you give the impression that you don't really want help from us, (since you seem to continue to ignore what we say, whenever you make any decisions about your treatment). Now you know why we are feeling just as frustrated as you are.
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.
Do seriously think I havent mentioned my concerns to my doc. Of course I have and Im not happy with what shes says. She told me Entocort is the way to go. So I should be passing out like I was and jittery. i dont think so. When I ask the Doc why the meds arent working, she says It works for everyone else and Im not giving it enough of a try. Im just coming on here to ask an opinion thats what forums are for right. If I dont like what the doc has to say I get a second opinion. If you would rather me not post on here anymore that is fine too. Im just trying to vent.
Lisa,
Venting is fine - that's definitely one of the purposes of this board, and we all need a place to do that, now and then.
Feel free to use us all you want, just don't abuse us.
Tex
Venting is fine - that's definitely one of the purposes of this board, and we all need a place to do that, now and then.
Feel free to use us all you want, just don't abuse us.
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.
Lisa--
MC can be incredibly frustrating, and most GI doctors don't help. Some people, like me, cannot tolerate any of the steroids, or Asacol, and have to do it by diet alone. Please don't react this way--I did initially--stick it out and realized that this forum can be the best thing that ever happened to you.
The advice and support that I have gotten from people who actually understand what I go through has been incredible.
Best Wishes,
Mags
MC can be incredibly frustrating, and most GI doctors don't help. Some people, like me, cannot tolerate any of the steroids, or Asacol, and have to do it by diet alone. Please don't react this way--I did initially--stick it out and realized that this forum can be the best thing that ever happened to you.
The advice and support that I have gotten from people who actually understand what I go through has been incredible.
Best Wishes,
Mags
Dear Lisa
I sense your frustration. Its Ok...and it is your decision. Hell knows........ it is difficult when the authority (i.e Docs) do not make sense....
I think the endoscopy is possibly the most interesting procedure you will be having done, which, if I understand correctly, has not been done on you before.....
In retrospect I wish that my GI had done it at the same time as my original colonoscopy. Given the association between MC and Celiac, it should, IMHO, be the default.
When (over one year after my colonoscopy and MC dx) I challenged my GI doc about the possibility of Celiac, he suggested I go back onto gluten (gluten challenge) and that he do an endoscopy to rule in or rule out Celiac.
I declined because there is no way I am going to subject myself to what I believe is a poison.
However, if you have not been on a consistent GF diet it may be worth it. They may find villi atrophy which would give you a dx of Celiac and MC. Of course, if they do not find villi atrophy that does not prove you are not gluten intolerant and malabsorbing. It will prove only that in the biopsies they have taken there is no evidence of 'end stage' damage - i.e. villi atrophy.
I hope you find some answers soon. Best wishes, Ant
I sense your frustration. Its Ok...and it is your decision. Hell knows........ it is difficult when the authority (i.e Docs) do not make sense....
I think the endoscopy is possibly the most interesting procedure you will be having done, which, if I understand correctly, has not been done on you before.....
In retrospect I wish that my GI had done it at the same time as my original colonoscopy. Given the association between MC and Celiac, it should, IMHO, be the default.
When (over one year after my colonoscopy and MC dx) I challenged my GI doc about the possibility of Celiac, he suggested I go back onto gluten (gluten challenge) and that he do an endoscopy to rule in or rule out Celiac.
I declined because there is no way I am going to subject myself to what I believe is a poison. However, if you have not been on a consistent GF diet it may be worth it. They may find villi atrophy which would give you a dx of Celiac and MC. Of course, if they do not find villi atrophy that does not prove you are not gluten intolerant and malabsorbing. It will prove only that in the biopsies they have taken there is no evidence of 'end stage' damage - i.e. villi atrophy.
I hope you find some answers soon. Best wishes, Ant
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natythingycolbery
- Rockhopper Penguin
- Posts: 590
- Joined: Tue Aug 31, 2010 5:23 pm
- Location: York, United Kingdom
Lisa, You say you have anxiety, I don't know if anyone has mentioned this or if i have missed it, are you on meds for that at all if so what are you on? as they can have a negative effect on MC.
Sorry I've just read that you are on meds, but still i wonder if they are causing issues for you?
Sorry I've just read that you are on meds, but still i wonder if they are causing issues for you?
'The more difficulties one has to encounter, within and without, the more significant and the higher in inspiration his life will be.' Horace Bushnell
Diagnosed with MC (LC) Aug 2010
Diagnosed with MC (LC) Aug 2010
Hi Lisa,
I know your frustration, but does it really matter what diagnosis another lab might give you? The treatment is the same for all of these digestive diseases. Why put yourself through another colonoscopy? There is no magic cure.
I have MC and my Doc thinks I now have Ulcerative colitis. I am not going to have a colonoscopy just so he can confirm what he thinks. I know the same medicine is used for both diseases.
Hang in there, I feel your pain.
karen
I know your frustration, but does it really matter what diagnosis another lab might give you? The treatment is the same for all of these digestive diseases. Why put yourself through another colonoscopy? There is no magic cure.
I have MC and my Doc thinks I now have Ulcerative colitis. I am not going to have a colonoscopy just so he can confirm what he thinks. I know the same medicine is used for both diseases.
Hang in there, I feel your pain.
karen