Visit the Microscopic Colitis Foundation Website
Colonic mucosa with focal chronic and subacute inflammation present in the lamina propria, nonspecific.[/img]
Just came back from 2nd Gi after second colonoscopy and he said ya the Boston doc was right. Lets try you on Lialda and see how it works. Are u kidding me. Im so upset right now. I said will it ever go away, he said no yo will have it for life.
I am so upset
SOOOO Upset
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
-
Joefnh
- Rockhopper Penguin
- Posts: 2478
- Joined: Wed Apr 21, 2010 8:25 pm
- Location: Southern New Hampshire
Hi Lisa, I'm sorry to hear of the Dx which I am assuming was positive for LC, but I am glad that this can at least help focus your efforts on a treatment plan that works for you.
For many of us the road to a diagnosis can almost be as frustrating as the disease itself. Now comes the important part... acceptance. Here what will help you is a plan that once you have accepted that this is the new you, you can come up with a way to find a medication that works for you and just as important find out what foods you may be reacting to.
I would strongly suggest that you try out the Enterolab testing. The results from that will help you focus your efforts on the correct diet and bring you into remission sooner, which is the most important part.
Thanks for the update... now it's time to plan and manage your wellness
--Joe
For many of us the road to a diagnosis can almost be as frustrating as the disease itself. Now comes the important part... acceptance. Here what will help you is a plan that once you have accepted that this is the new you, you can come up with a way to find a medication that works for you and just as important find out what foods you may be reacting to.
I would strongly suggest that you try out the Enterolab testing. The results from that will help you focus your efforts on the correct diet and bring you into remission sooner, which is the most important part.
Thanks for the update... now it's time to plan and manage your wellness
--Joe
Joe
Interesting that he said you'd have it for life, instead of trying to sell you on false hope of spontaneous remission like my GI did. Did he mention anything about diet?
Just FYI, here are the inactive ingredients in Lialda. I don't see dairy or gluten, so that's good, but others might comment on anything suspect:
The inactive ingredients of Lialda tablets are sodium carboxymethylcellulose, carnauba wax, stearic acid, silica (colloidal hydrated), sodium starch glycolate (type A), talc, magnesium stearate, methacrylic acid copolymer types A and B, triethylcitrate, titanium dioxide, red ferric oxide and polyethyleneglycol 6000.
Just FYI, here are the inactive ingredients in Lialda. I don't see dairy or gluten, so that's good, but others might comment on anything suspect:
The inactive ingredients of Lialda tablets are sodium carboxymethylcellulose, carnauba wax, stearic acid, silica (colloidal hydrated), sodium starch glycolate (type A), talc, magnesium stearate, methacrylic acid copolymer types A and B, triethylcitrate, titanium dioxide, red ferric oxide and polyethyleneglycol 6000.
Hi Lisa,
I am sorry your diagnosis came back the same. I beieve it is for life but I went into remission for 4 years and you can too! You have to change your diet in order to overcome the debilitating effects. Start a food diary and keep track of what makes you sick. It will be hard at first, but as time goes by, you will discover the culprits making you ill.
I wish you much success,
karen
I am sorry your diagnosis came back the same. I beieve it is for life but I went into remission for 4 years and you can too! You have to change your diet in order to overcome the debilitating effects. Start a food diary and keep track of what makes you sick. It will be hard at first, but as time goes by, you will discover the culprits making you ill.
I wish you much success,
karen
-
TooManyHats
- Rockhopper Penguin
- Posts: 550
- Joined: Fri Jan 14, 2011 9:30 pm
- Location: New Jersey
Lisa,
I guess I'm having a hard time understanding why you're so upset. You had a diagnosis of MC more than three months ago, as I recall, and apparently have been in denial since then. I'm sorry that you've had a hard time accepting your diagnosis.
There seems to be different reactions to being told we have MC. Some are relieved that their condition actually has a name and an explanation. Many of us have gone through the five stages of grief: Denial, anger, bargaining, depression and acceptance. http://en.wikipedia.org/wiki/K%C3%BCbler-Ross_model It sounds like you are in the anger stage, which is probably a good sign because you have moved from the denial stage.
I hope you will be able to get to the acceptance stage soon so that you can begin working toward remission. We are here to help you as soon as you are ready.
Gloria
I guess I'm having a hard time understanding why you're so upset. You had a diagnosis of MC more than three months ago, as I recall, and apparently have been in denial since then. I'm sorry that you've had a hard time accepting your diagnosis.
There seems to be different reactions to being told we have MC. Some are relieved that their condition actually has a name and an explanation. Many of us have gone through the five stages of grief: Denial, anger, bargaining, depression and acceptance. http://en.wikipedia.org/wiki/K%C3%BCbler-Ross_model It sounds like you are in the anger stage, which is probably a good sign because you have moved from the denial stage.
I hope you will be able to get to the acceptance stage soon so that you can begin working toward remission. We are here to help you as soon as you are ready.
Gloria
You never know what you can do until you have to do it.
-
Foxnhound8
- Adélie Penguin
- Posts: 84
- Joined: Thu Dec 30, 2010 7:34 am
Lisa,
As I sit here eating a boneless chicken breast for breakfast and reading your post, I can't help but feel all those "upset" feelings again, too. I received the CC diagnosis about Christmas time and sometimes I feel sorry for myself, too. BUT...you must move forward to acceptance and finding ways to help yourself. The folks here are amazing. Use their input to help you get better.
foxnhound
As I sit here eating a boneless chicken breast for breakfast and reading your post, I can't help but feel all those "upset" feelings again, too. I received the CC diagnosis about Christmas time and sometimes I feel sorry for myself, too. BUT...you must move forward to acceptance and finding ways to help yourself. The folks here are amazing. Use their input to help you get better.
foxnhound
-
MaggieRedwings
- King Penguin
- Posts: 3865
- Joined: Tue May 31, 2005 3:16 am
- Location: SE Pennsylvania
Morning Lisa,
I feel bad that you are not accepting what the Dx is from the doctor but he, to me, sounds like one I would stick with since he is not trying to give you the disease as a little inconvenience but as it really is. It is a life path and not one we all like but one that has to have our acceptance and then work to find the correct route on it for you. Meds, meds & diet or diet alone. Please start a food diary and consider the Entrolab testing to sort out your intolerances.
The 5 stages of grief, and I agree with Gloria, anger seems to be where you are. You need to deal with getting yourself to a point you can handle this and not be so upset all the time. It will just aggravate your condition.
Please keep us posted on what you decide to do and remember you may take a few steps forward and then one backward. I had a very hard and long journey on the path but it paid off in the end. At times, it was depressing to hear people say they had achieved remission in a short time but sometimes the turtle wins the race.
Maggie
I feel bad that you are not accepting what the Dx is from the doctor but he, to me, sounds like one I would stick with since he is not trying to give you the disease as a little inconvenience but as it really is. It is a life path and not one we all like but one that has to have our acceptance and then work to find the correct route on it for you. Meds, meds & diet or diet alone. Please start a food diary and consider the Entrolab testing to sort out your intolerances.
The 5 stages of grief, and I agree with Gloria, anger seems to be where you are. You need to deal with getting yourself to a point you can handle this and not be so upset all the time. It will just aggravate your condition.
Please keep us posted on what you decide to do and remember you may take a few steps forward and then one backward. I had a very hard and long journey on the path but it paid off in the end. At times, it was depressing to hear people say they had achieved remission in a short time but sometimes the turtle wins the race.
Maggie
Maggie Scarpone
___________________
Resident Birder - I live to bird and enjoy life!
___________________
Resident Birder - I live to bird and enjoy life!
-
TooManyHats
- Rockhopper Penguin
- Posts: 550
- Joined: Fri Jan 14, 2011 9:30 pm
- Location: New Jersey
Well, the diet recommendation--or lack thereof--doesn't surprise me. I got that same recommendation from my doctor! My doctor said that her patients taking Lialda were quite happy with the results. The side effects were very minimized by my doctor. I agree with you, it's the side effects of the medications that have me concerned.
Arlene
Progress, not perfection.
Progress, not perfection.
-
MaggieRedwings
- King Penguin
- Posts: 3865
- Joined: Tue May 31, 2005 3:16 am
- Location: SE Pennsylvania
Lisa,
It is apparent that your doctor is in the same boat as most GIs and if you have been listening here, you will know that they know little about diet being a factor that helps with this disease. Also, I do blood tests on a monthly basis for another problem and it is not like it is a big trial. You just go and get them done. You need to decide for yourself what your course of action is going to be with this disease and in my honest opinion getting upset all of the time with answers or "supposed insight from your doctor" is not helping your condition. Stress is a huge trigger. You need to weigh the side effects of meds against the good they can possibly bring or just decide that diet might be your best bet.
Calm down and look at this through "unclouded" eyes and realize it is you that is responsible for your healing - doctors, meds, etc. can just be crutches.
I know you will make the right decision if you follow your heart.
Maggie
It is apparent that your doctor is in the same boat as most GIs and if you have been listening here, you will know that they know little about diet being a factor that helps with this disease. Also, I do blood tests on a monthly basis for another problem and it is not like it is a big trial. You just go and get them done. You need to decide for yourself what your course of action is going to be with this disease and in my honest opinion getting upset all of the time with answers or "supposed insight from your doctor" is not helping your condition. Stress is a huge trigger. You need to weigh the side effects of meds against the good they can possibly bring or just decide that diet might be your best bet.
Calm down and look at this through "unclouded" eyes and realize it is you that is responsible for your healing - doctors, meds, etc. can just be crutches.
I know you will make the right decision if you follow your heart.
Maggie
Maggie Scarpone
___________________
Resident Birder - I live to bird and enjoy life!
___________________
Resident Birder - I live to bird and enjoy life!
Lisa, do you have more medical issues than just MC? Because you are talking about your blood work needing to be done every couple of months. That is not a MC thing, at least not my MC.
When it comes to MC and Doctors, how many titles they may have, how prestigious they may be and how famous the hospital may be (ever for their MC knowledge), I can tell you now:
WHEN IT COMES TO MC EXPECT NOTHING MORE FROM YOUR DOCTOR THAN A. A PROPER DIAGNOSES AND B. THE RIGHT MEDICATION.
That is all they have to offer, together with some useless and wrong diet advice, eat fiber (NO), avoid coffee (makes no difference) and be careful with alcohol (also makes no difference).
And also it is well known here, a lot of doctors underestimate the impact of MC on a person's life, I have the idea some GI't think, it doesn't cause any permanent damage to your bowel, there are no side complication and you won't dy of it, so please shut up.
It is not because you have a bad GI or something like that, GI's follow mainstream medical information, and the information on MC and information on treatment is very poor.
And that is why, this group is so great. Do you really expect that we all got this far in our life, by only listening to our doctor? Of course not. It is thanks to founding members of this group (again Tex, Polly and others thank you so much), that so many MC'ers all over the world are doing so well. Here you can find the information that can get your life back on track. It is not a replacement for a doctor, it is complementary.
Hoping to get advice from your doctor about a diet, is useless. But asking advice here, is one of the best things you can do. I agree with Joe, find out about enterolab and see if you can get yourself tested for food intolerances. After that start a diet, as so many do here. Also I would advice start eating gluten free already today.
We have all been there, the day we got our diagnosis, non of us was thrilled with it. The idea we have it for life and the only treatment is medication, I called my entocort in the beginning "mijn rotpillen" (means my horrible pills), I hated it, being on something like prednisone. So being upset is, I think a normal reaction. But you have already found us here, you know about the alternative option of gluten, soy and diary free diet, the enterolab testing. So there is hope.
In the time I have been active on this board I have seen it over and over again, the only way to get this disease under control is, to play a very active role in it yourself. It is very important you know all the ins an outs of this disease yourself, so you can educate your doctor and ask for the tests you need. But above all it is so important to find out to which foods you do react and to which one you don't, so you can adjust your diet. And that is a long and difficult road. Like Gabes always says, there is no quick fix and I won't be easy.
I wish you all the best and I hope you will find your way to remission.
and is there a reason why you are not on entecort?[/b]
When it comes to MC and Doctors, how many titles they may have, how prestigious they may be and how famous the hospital may be (ever for their MC knowledge), I can tell you now:
WHEN IT COMES TO MC EXPECT NOTHING MORE FROM YOUR DOCTOR THAN A. A PROPER DIAGNOSES AND B. THE RIGHT MEDICATION.
That is all they have to offer, together with some useless and wrong diet advice, eat fiber (NO), avoid coffee (makes no difference) and be careful with alcohol (also makes no difference).
And also it is well known here, a lot of doctors underestimate the impact of MC on a person's life, I have the idea some GI't think, it doesn't cause any permanent damage to your bowel, there are no side complication and you won't dy of it, so please shut up.
It is not because you have a bad GI or something like that, GI's follow mainstream medical information, and the information on MC and information on treatment is very poor.
And that is why, this group is so great. Do you really expect that we all got this far in our life, by only listening to our doctor? Of course not. It is thanks to founding members of this group (again Tex, Polly and others thank you so much), that so many MC'ers all over the world are doing so well. Here you can find the information that can get your life back on track. It is not a replacement for a doctor, it is complementary.
Hoping to get advice from your doctor about a diet, is useless. But asking advice here, is one of the best things you can do. I agree with Joe, find out about enterolab and see if you can get yourself tested for food intolerances. After that start a diet, as so many do here. Also I would advice start eating gluten free already today.
We have all been there, the day we got our diagnosis, non of us was thrilled with it. The idea we have it for life and the only treatment is medication, I called my entocort in the beginning "mijn rotpillen" (means my horrible pills), I hated it, being on something like prednisone. So being upset is, I think a normal reaction. But you have already found us here, you know about the alternative option of gluten, soy and diary free diet, the enterolab testing. So there is hope.
In the time I have been active on this board I have seen it over and over again, the only way to get this disease under control is, to play a very active role in it yourself. It is very important you know all the ins an outs of this disease yourself, so you can educate your doctor and ask for the tests you need. But above all it is so important to find out to which foods you do react and to which one you don't, so you can adjust your diet. And that is a long and difficult road. Like Gabes always says, there is no quick fix and I won't be easy.
I wish you all the best and I hope you will find your way to remission.
and is there a reason why you are not on entecort?[/b]
"As the sense of identity shifts from the imaginary person to your real being as presence awareness, the life of suffering dissolves like mist before the rising sun"
Lisa--
Lialda has a lot less side effects than its parent drug, Asacol. At least your hair won't fall out, which mine did. Blood tests are really no big deal. All you have to do is drop by the lab for a few minutes and it is over. I had so many that I made friends with one of the vampires (blood techs) who did not hurt me, and now whenever I have to go in, she grabs my chart immediately so I don't get someone else.
I guess I feel a little different, as my diagnosis came as a relief to me. If I knew what it was, I could deal with it. I still get mad sometimes, but I have had a relatively "interesting" life, in a Chinese way. I just try to remember how much worse it could be. For a long time, I really thought I had cancer.
It took me years to find this forum. You are lucky to have found it so soon. Please use the hundreds of years of combined wisdom here to help you on your journey.
Best Wishes,
Mags
Lialda has a lot less side effects than its parent drug, Asacol. At least your hair won't fall out, which mine did. Blood tests are really no big deal. All you have to do is drop by the lab for a few minutes and it is over. I had so many that I made friends with one of the vampires (blood techs) who did not hurt me, and now whenever I have to go in, she grabs my chart immediately so I don't get someone else.
I guess I feel a little different, as my diagnosis came as a relief to me. If I knew what it was, I could deal with it. I still get mad sometimes, but I have had a relatively "interesting" life, in a Chinese way. I just try to remember how much worse it could be. For a long time, I really thought I had cancer.
It took me years to find this forum. You are lucky to have found it so soon. Please use the hundreds of years of combined wisdom here to help you on your journey.
Best Wishes,
Mags
The bloodwork I am talking about is the bloodworks that needs to be done while on some of these medications. Like for your liver and kidneys. The doc mentioned nothing of that sort. Thats what I was talking about. And I did try going gluten, dairy and soy free for almost a month and ended up in the hospital. Also, I had bad side affects from entocort. Major insomnia, tremors, etc.
Lisa, first I am very sorry you have MC (like all of us here) and that you are upset about it. But I do wonder what do you expect from us here. Support because you're feeling bad, reassurance and hear it all will get better. Advice on medication? Advice on diet? I really wonder what do you want to hear?
I ask this, because any reply any of us give to you, or we see it wrong (you are not in denial but upset what you doctor told you or he doesn't care enough), any other advice on bloodwork for your medication doesn't seem to get to the point and any diet advice also seems useless and not working for you. Any support, any advice, any help seems to be totally useless, or you are not interested in hearing it, or it is totally missing the point.
No one, really no one can solve your problem, but yourself. It is your disease and your problem, not your doctors, and also your MC is a the problem of one of the members here. A lot of people have a lot of knowledge and experience in dealing with MC. It is up to you if of you are willing to listen to the advices of those wise people (don't worry I don't include myself, I am more referring to the founding members of this site) or not.
And with all the replies, advices and support you get on your messages, there is nothing wrong with once and while say a thank you to it, even if it are not the advices you are looking for. We all take an effort in listening to you and replying to it.
Sorry but I needed to get this of my chest.
harma
I ask this, because any reply any of us give to you, or we see it wrong (you are not in denial but upset what you doctor told you or he doesn't care enough), any other advice on bloodwork for your medication doesn't seem to get to the point and any diet advice also seems useless and not working for you. Any support, any advice, any help seems to be totally useless, or you are not interested in hearing it, or it is totally missing the point.
No one, really no one can solve your problem, but yourself. It is your disease and your problem, not your doctors, and also your MC is a the problem of one of the members here. A lot of people have a lot of knowledge and experience in dealing with MC. It is up to you if of you are willing to listen to the advices of those wise people (don't worry I don't include myself, I am more referring to the founding members of this site) or not.
And with all the replies, advices and support you get on your messages, there is nothing wrong with once and while say a thank you to it, even if it are not the advices you are looking for. We all take an effort in listening to you and replying to it.
Sorry but I needed to get this of my chest.
harma
"As the sense of identity shifts from the imaginary person to your real being as presence awareness, the life of suffering dissolves like mist before the rising sun"