Hello everyone and I am so glad that I found all of you.
I had been violently sick for 3 or 4 months but have had symptoms for over 2 years. When I went to the GI doc in Nov, he said that since I had gained weight since my last visit that he wasn't concerned. I have always been heavy and I had managed to gain weight in a year due to some other issues. I was very put off by his remarks because even us fat people can become ill and I had lost weight since my weight gain, he just wasn't aware of it. Anyway, long story short, it took him 3 months to diagnose me with collagenous colitis. He told me nothing about it and nothing to do except take the pepto bismal. Which, after several weeks I still had D along with a black tongue and teeth which really isn't acceptable as I work with the public.
I was still staying home 2 - 3 days a week (there are not facilities in my office) due to D. So he put me on Entocort - 9mg a day. The entocort worked but I did find myself extremely irritable, racing heart and an appetite that I was almost unable to control. I had lost 30 pounds in 3 months of being sick and I really hate to gain the weight back.
Anyway, I say all of that to say this - I go back to the dr on 4/6 - I have been researching trying to find out what I need to do to control this disease - and I have found a wealth of information here and I thank you for that.
I (because I am stubborn sometimes) quit taking the entocort a few days ago - I was really becoming worried with the side effects and I wanted to see if I was over it if that is possible - my stools were hard and things are good -
I have noticed today that the rumblings are returning and the feeling that I have to go are returning so I am certain that I will have to go back on the entocort. I really don't have a warm fuzzy feeling with my doctor - I think he allowed me to be sick for too long before he helped me because I don't think he believed I was ill. I have never been so ill in my life. I had to have a 2nd colonoscopy in a year because he didn't check for MC the first time when I was sick last year.
I am going to go through the enterolab(sp?) and check my intolerances.
I know that I am stupid for stopping the meds, but I just wanted to see for myself - he never told me if you become cured or what kind of diet or if I will have this for the rest of my life or what???? I just want to know what lies ahead of me. I want to feel normal again.
I will continue to research the posts here and thank you all for your knowledge and concern.
Linda
Winging It
Moderators: Rosie, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi Linda,
Welcome to our internet family. Don't feel like the Lone Ranger - most GI docs know so little about this disease that they don't take it seriously - they consider it to be a "nuisance" disease. We have found that no one understands this disease, unless they have it. If you have it, you immediately recognize it as a debilitating, and life-altering disease.
The bad news is, there are no cures. The good news is that the symptoms can be controlled, and you can definitely get your life back, if you are willing to do what is necessary to accomplish it. There are basically three ways to live with this disease, (besides doing nothing, and just putting up with the symptoms, for the rest of your life):
1. Medications, and a maintenance dose will be required for the rest of your life
2. Diet changes, some of which will have to be followed for the rest of your life
3. A combination of meds and diet, which will have to be followed for the rest of your life
Entocort is by far the most effective "safe" medication for treating MC. It does sound as if you are having neurological side effects from it, however, which are certainly not good, in the long run, so you might want to give some serious thought to the diet. Many of us here maintain our remission this way, (without an meds), and we've done so for years. There are other meds that can be used, but they are not as desirable as Entocort. You might want to ask your doctor about them, though, if you don't feel that the diet would be a workable option for you. The most popular meds are in the 5-ASA class, and if your doc offers you one of these, if I were in your shoes, I would decline to try Asacol, which is one of the oldest drugs in this class, (many members have adverse reactions to it). Instead, I would opt for one of the newer ones, such as Lialda, or one that does not contain lactose, (which Asacol does), such as Pentasa, or Colasal, etc.
Ordering some tests from Entocort is an excellent idea, especially if you feel that you might prefer to control your symptoms by diet alone. That will remove a lot of doubt, and trial and error, from the process.
I'm glad you found us. Again, welcome aboard, and please feel free to ask anything that comes to mind.
Tex (Wayne)
Welcome to our internet family. Don't feel like the Lone Ranger - most GI docs know so little about this disease that they don't take it seriously - they consider it to be a "nuisance" disease. We have found that no one understands this disease, unless they have it. If you have it, you immediately recognize it as a debilitating, and life-altering disease.
The bad news is, there are no cures. The good news is that the symptoms can be controlled, and you can definitely get your life back, if you are willing to do what is necessary to accomplish it. There are basically three ways to live with this disease, (besides doing nothing, and just putting up with the symptoms, for the rest of your life):
1. Medications, and a maintenance dose will be required for the rest of your life
2. Diet changes, some of which will have to be followed for the rest of your life
3. A combination of meds and diet, which will have to be followed for the rest of your life
Entocort is by far the most effective "safe" medication for treating MC. It does sound as if you are having neurological side effects from it, however, which are certainly not good, in the long run, so you might want to give some serious thought to the diet. Many of us here maintain our remission this way, (without an meds), and we've done so for years. There are other meds that can be used, but they are not as desirable as Entocort. You might want to ask your doctor about them, though, if you don't feel that the diet would be a workable option for you. The most popular meds are in the 5-ASA class, and if your doc offers you one of these, if I were in your shoes, I would decline to try Asacol, which is one of the oldest drugs in this class, (many members have adverse reactions to it). Instead, I would opt for one of the newer ones, such as Lialda, or one that does not contain lactose, (which Asacol does), such as Pentasa, or Colasal, etc.
Ordering some tests from Entocort is an excellent idea, especially if you feel that you might prefer to control your symptoms by diet alone. That will remove a lot of doubt, and trial and error, from the process.
I'm glad you found us. Again, welcome aboard, and please feel free to ask anything that comes to mind.
Tex (Wayne)
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.
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MaggieRedwings
- King Penguin
- Posts: 3865
- Joined: Tue May 31, 2005 3:16 am
- Location: SE Pennsylvania
Welcome Linda,
I am 100% with Tex in his comments - GIs really have little understanding and sometimes just blow us off as a nusiance disease. Yes it is a nusiance to say the least and can be quite debilitating (sp?).
Good on doing the entocort tests.
I myself have had the disease for almost 10 years and go the diet alone route. I had side effects from Entocort and Asacol did nothing at all for me.
Keep us posted and doing research on this site is a real bonus to you getting well.
Maggie
I am 100% with Tex in his comments - GIs really have little understanding and sometimes just blow us off as a nusiance disease. Yes it is a nusiance to say the least and can be quite debilitating (sp?).
Good on doing the entocort tests.
I myself have had the disease for almost 10 years and go the diet alone route. I had side effects from Entocort and Asacol did nothing at all for me.
Keep us posted and doing research on this site is a real bonus to you getting well.
Maggie
Maggie Scarpone
___________________
Resident Birder - I live to bird and enjoy life!
___________________
Resident Birder - I live to bird and enjoy life!
Thanks to you all!
I ordered my tests last night so I am excited to get the ball rolling with the tests. Will let you know when I find something out.
Out of fear and since I was feeling the beginnings of a relapse, for now I went back on the entocort but hope that when I get the test results and learn about the diet and nutrition that I won't need it anymore. My 27th wedding anniversary is this weekend so I really don't want to be sick for that.
It is great to know that this disease can be controlled with diet. I am so excited about all of the new information that I have found. I think I was on information overload yesterday - but still researching the site and so thankful for all of you!
Have a blessed day and thanks again.
Linda
I ordered my tests last night so I am excited to get the ball rolling with the tests. Will let you know when I find something out.
Out of fear and since I was feeling the beginnings of a relapse, for now I went back on the entocort but hope that when I get the test results and learn about the diet and nutrition that I won't need it anymore. My 27th wedding anniversary is this weekend so I really don't want to be sick for that.
It is great to know that this disease can be controlled with diet. I am so excited about all of the new information that I have found. I think I was on information overload yesterday - but still researching the site and so thankful for all of you!
Have a blessed day and thanks again.
Linda