Hi all,
I've been suffering from diarrhea for a couple of years and finally went in to see a Gastroentoligist. My use of Imodium, Pepto-Bismol, Kaopectate, pro-biotics (Kefir), and pre-biotics (Metamucil) as methods to control my bouts was no longer giving me the relief I need. I had a colonoscopy last Tuesday and the biopsy the Dr. performed tested positive for collagenous colitis. He has prescribed Entocort for 6 weeks (3 capsules every morning). I am to schedule another appointment with him at the end of the 6 weeks.
I know virtually nothing about this condition so I am here to learn from your experiences.
Carol, WI
New Here & Introduction
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
New Here & Introduction
"Never pass up a bathroom and never trust a fart." - the late George Carlin
Hi Carol, and welcome!
I think Rose meant side effects. Rose had side effects from Entocort, and it did not work for me, but it has worked for many members here, so I hope that will be your experience. The best way to learn is to browse around the boards. There's not much accurate information about MC (microscopic colitis--CC is a subtype, but the symptoms and treatment for the subtypes is the same, so we call it all MC) on the Internet, even on websites one would normally think of as "reliable." You've come to the right place. Ask anything. You can't shock us or gross us out!
Courtney
I think Rose meant side effects. Rose had side effects from Entocort, and it did not work for me, but it has worked for many members here, so I hope that will be your experience. The best way to learn is to browse around the boards. There's not much accurate information about MC (microscopic colitis--CC is a subtype, but the symptoms and treatment for the subtypes is the same, so we call it all MC) on the Internet, even on websites one would normally think of as "reliable." You've come to the right place. Ask anything. You can't shock us or gross us out!
Courtney
Hypothyroid 05/05
LC/CC 07/08
Celiac 07/08
LC/CC 07/08
Celiac 07/08
Thank you for the welcome Courtney and clarification on s/e definition! It's very nice to know that I have come to a good place here and that I can't gross you people out :) !! Believe me, I've grossed myself (and dear husband) out several times recently in the middle of the night. That's probably the major reason I ended up going in for a colonoscopy with biopsy. I'm trying to read the past messages today (may take a while) and so far, I'm learning quite a lot.
Carol, WI
Carol, WI
"Never pass up a bathroom and never trust a fart." - the late George Carlin
Hi Carol,
Welcome to our internet family. I'm sorry to hear that you've been having "accidents", especially at night, but most of us have had experience with that in the past, so we understand what you're having to deal with. Hopefully, the Entocort will be effective for you, and in a couple of weeks or so, your GI system will begin to perform more normally, again.
Again, welcome to the board.
Tex (Wayne)
Welcome to our internet family. I'm sorry to hear that you've been having "accidents", especially at night, but most of us have had experience with that in the past, so we understand what you're having to deal with. Hopefully, the Entocort will be effective for you, and in a couple of weeks or so, your GI system will begin to perform more normally, again.
Again, welcome to the board.
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.
Thank you for your welcome Tex! I'm sure glad I found this site and I'm still in the process of reading all the great info you have here.
I'll probably have questions for you all later. I think the necessity of diet/food restrictions suggestions may be one of my first questions.
Have a great weekend!
Carol, WI
I'll probably have questions for you all later. I think the necessity of diet/food restrictions suggestions may be one of my first questions.
Have a great weekend!
Carol, WI
"Never pass up a bathroom and never trust a fart." - the late George Carlin
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jodibelle352
- Angel
- Posts: 610
- Joined: Sat Jun 21, 2008 10:57 pm
- Location: Michigan
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Hi Carol:
Not to discourage you but I also have been dx with CC and was put on Entocort for 6-8 weeks. Well...................it's now been 5 months and I am still on Entocort. I did manage to go down to 6mgs daily and have been alright however after trying to go down to 3mgs daily hasn't been very successful for me. With the love and support from everyone on these boards I've come to accept that I may always have to be on a maintenance dosage of Entocort so that the D doesn't flare as often. I myself am a Newbie and have only been on a few months. I feel that I'm still new here because there's just soooo much information and at times you just need someone to vent to who has gone through and is going through what you are. I am doing so much better emotionally, physically and medically by watching what I eat and staying GF as much as possible and I am still having to watch and read labels on everything I reach for in the grocery store. God Bless those who have reached out to me and helped me through this illness I love them all dearly and you will come to appreciate them just as I have. Don't give up or be discouraged if taking the Entocort takes longer than your GI designated because it may take longer than they are telling you because some GI's are NOT well versed with including the GF Diet and medication together. So just hang in there and keep in touch.
Love and God Bless:
Jodi
Not to discourage you but I also have been dx with CC and was put on Entocort for 6-8 weeks. Well...................it's now been 5 months and I am still on Entocort. I did manage to go down to 6mgs daily and have been alright however after trying to go down to 3mgs daily hasn't been very successful for me. With the love and support from everyone on these boards I've come to accept that I may always have to be on a maintenance dosage of Entocort so that the D doesn't flare as often. I myself am a Newbie and have only been on a few months. I feel that I'm still new here because there's just soooo much information and at times you just need someone to vent to who has gone through and is going through what you are. I am doing so much better emotionally, physically and medically by watching what I eat and staying GF as much as possible and I am still having to watch and read labels on everything I reach for in the grocery store. God Bless those who have reached out to me and helped me through this illness I love them all dearly and you will come to appreciate them just as I have. Don't give up or be discouraged if taking the Entocort takes longer than your GI designated because it may take longer than they are telling you because some GI's are NOT well versed with including the GF Diet and medication together. So just hang in there and keep in touch.
Love and God Bless:
Jodi
May God and All His Angels, watchover, protect and guide you "One Day At A Time".
Hi Carol,
My story started just like yours. I was prescribed Entocort too. Entocort worked for awhile, then I had to stop taking it because of side effects - bruising, joint pain and I thought I was having a heart attack. I'm very sensitive to meds. Others do just fine with it. I've eliminated my problems via diet. It took a long time and a lot of work to figure out what I could and couldn't eat but it's been so worth it. (I tried pizza yesterday to prove to myself that gluten is the enemy) You will get great advice here. It helps so much when the discouragement starts to set it, to have others understand what you're going through.
Good luck!
My story started just like yours. I was prescribed Entocort too. Entocort worked for awhile, then I had to stop taking it because of side effects - bruising, joint pain and I thought I was having a heart attack. I'm very sensitive to meds. Others do just fine with it. I've eliminated my problems via diet. It took a long time and a lot of work to figure out what I could and couldn't eat but it's been so worth it. (I tried pizza yesterday to prove to myself that gluten is the enemy) You will get great advice here. It helps so much when the discouragement starts to set it, to have others understand what you're going through.
Good luck!
Becky
New Here & Introduction
Hi Jodi,
I'm going to try to stay optimistic for the next 6 weeks at least :) As a matter of fact, after just one day on Entocort, I've been doing better. I didn't have to take any Imodium all day and I even ate some coleslaw with my lunch. Maybe it's just a coincidence since Tex mentioned it takes about 2 weeks to kick in. I didn't realize that it may be necessary to continue taking Entocort so that is really helpful to know.
Carol, WI
I'm going to try to stay optimistic for the next 6 weeks at least :) As a matter of fact, after just one day on Entocort, I've been doing better. I didn't have to take any Imodium all day and I even ate some coleslaw with my lunch. Maybe it's just a coincidence since Tex mentioned it takes about 2 weeks to kick in. I didn't realize that it may be necessary to continue taking Entocort so that is really helpful to know.
Carol, WI
"Never pass up a bathroom and never trust a fart." - the late George Carlin
Becky,
I'm beginning to notice a pattern of GF success stories. My Gastroenterologist blood tested me for Celiac Disease and my test was negative. When the nurse called with my biopsy results Thursday there was no mention of any dietary restrictions. I am expecting a letter from the Dr. with further details. Perhaps there will be some dietary recommendations in his letter. I understand, from reading here, that just because my Celiac test was negative it does not rule out a possibility of gluten sensitivity.
I don't know too much about going GF so I may need to start researching on it :) For now, I'll just stick with the 6 week course of Entocort and see how that goes. Hopefully, I will not experience the sensitivity that you have but at least I will know what to look for if I do.
I'm sure glad I found this support group! It really does help to know that I can discuss my condition without embarrasment with understanding people.
Carol, WI
I'm beginning to notice a pattern of GF success stories. My Gastroenterologist blood tested me for Celiac Disease and my test was negative. When the nurse called with my biopsy results Thursday there was no mention of any dietary restrictions. I am expecting a letter from the Dr. with further details. Perhaps there will be some dietary recommendations in his letter. I understand, from reading here, that just because my Celiac test was negative it does not rule out a possibility of gluten sensitivity.
I don't know too much about going GF so I may need to start researching on it :) For now, I'll just stick with the 6 week course of Entocort and see how that goes. Hopefully, I will not experience the sensitivity that you have but at least I will know what to look for if I do.
I'm sure glad I found this support group! It really does help to know that I can discuss my condition without embarrasment with understanding people.
Carol, WI
"Never pass up a bathroom and never trust a fart." - the late George Carlin
Hi Carol,
My doctor did not recommend going gf. (He looked at me like I was crazy when I suggested it) You'll find lots of us have not had great experineces with our docs. I haven't seen him in well over a year and don't plan on going back until it's time for a routine colonoscopy. That's why this forum has been truly a lifesaver for me. I did well on Entocort for a few weeks before the side effects started. Hopefully, like others, you won't have side effects and you'll have better communication and support from your doctor. The encouragement here to try diet alone was scary but very impowering.
Best wishes to you!
My doctor did not recommend going gf. (He looked at me like I was crazy when I suggested it) You'll find lots of us have not had great experineces with our docs. I haven't seen him in well over a year and don't plan on going back until it's time for a routine colonoscopy. That's why this forum has been truly a lifesaver for me. I did well on Entocort for a few weeks before the side effects started. Hopefully, like others, you won't have side effects and you'll have better communication and support from your doctor. The encouragement here to try diet alone was scary but very impowering.
Best wishes to you!
Becky
Hi Carol,
My remark about a couple of weeks before seeing a significant response to Entocort was simply based on a typical response time, according to the responses reported by our membership. We are all different in our responses to meds, and some of us are fortunate, like you, and respond in only a day or so, whereas others may require months. I hesitate to tell someone that they will see improvement in just a day or so, because if I do that, and they are still struggling after a few weeks have passed, with no improvement, they tend to become very discouraged. It's always better to be pleasantly surprised, than to be disappointed.
Becky's remarks are right on target, and her experience with her GI doc, (regarding food intolerances and MC), is typical for many/most of us. I can almost guarantee that there will not be any dietary recommendations forthcoming from your GI doc, because most them are convinced that only someone with fully-developed celiac disease can be sensitive to gluten, or any other food intolerance. Most GI docs are still in the dark ages, as far as treating MC is concerned. CC was first described in 1976, and LC/MC were first described in 1980, yet only in the last year or two, have GI docs begun to look for this disease routinely. Prior to that, diagnoses were very rare, because you can't find MC, unless you specifically look for it. IOW, it took them almost 30 years just to recognize that they need to actively look for MC. I hope it doesn't take them another 25 or 30 years to figure out that food intolerances are a primary cause of the inflammation, but I certainly wouldn't be surprised if it took them that long, because as a group, they seem to be very resistant to change, and slow to adopt new technology and new ideas, thought there are a few shining examples, of course, who are exceptions to that "rule".
It's good to hear that you're doing so much better, so soon.
Tex
My remark about a couple of weeks before seeing a significant response to Entocort was simply based on a typical response time, according to the responses reported by our membership. We are all different in our responses to meds, and some of us are fortunate, like you, and respond in only a day or so, whereas others may require months. I hesitate to tell someone that they will see improvement in just a day or so, because if I do that, and they are still struggling after a few weeks have passed, with no improvement, they tend to become very discouraged. It's always better to be pleasantly surprised, than to be disappointed.
Becky's remarks are right on target, and her experience with her GI doc, (regarding food intolerances and MC), is typical for many/most of us. I can almost guarantee that there will not be any dietary recommendations forthcoming from your GI doc, because most them are convinced that only someone with fully-developed celiac disease can be sensitive to gluten, or any other food intolerance. Most GI docs are still in the dark ages, as far as treating MC is concerned. CC was first described in 1976, and LC/MC were first described in 1980, yet only in the last year or two, have GI docs begun to look for this disease routinely. Prior to that, diagnoses were very rare, because you can't find MC, unless you specifically look for it. IOW, it took them almost 30 years just to recognize that they need to actively look for MC. I hope it doesn't take them another 25 or 30 years to figure out that food intolerances are a primary cause of the inflammation, but I certainly wouldn't be surprised if it took them that long, because as a group, they seem to be very resistant to change, and slow to adopt new technology and new ideas, thought there are a few shining examples, of course, who are exceptions to that "rule".
It's good to hear that you're doing so much better, so 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.
Becky,
I have a colonoscopy question. I hate them and the one I had the other day was only my second time. Actually, it's the prep part I hate :) Do you think I will have to have one annually now? Prior to the biopsy I was on a 5 year schedule.
Carol
I have a colonoscopy question. I hate them and the one I had the other day was only my second time. Actually, it's the prep part I hate :) Do you think I will have to have one annually now? Prior to the biopsy I was on a 5 year schedule.
Carol
"Never pass up a bathroom and never trust a fart." - the late George Carlin
Tex,
Thanks for the clarification on the 2 weeks and taking Endocort. So far today, I am experiencing the "pleasantly surprised" factor and feeling pretty darn good for a change! I did notice that my face was flushed kind of red when I got up this morning. Perhaps this a side of effect of the Endocort? I have just begun reading about the GF lifestyle this morning in the files here. You people certainly a lot of information on the subject.
Have a great Easter weekend!
Carol
Thanks for the clarification on the 2 weeks and taking Endocort. So far today, I am experiencing the "pleasantly surprised" factor and feeling pretty darn good for a change! I did notice that my face was flushed kind of red when I got up this morning. Perhaps this a side of effect of the Endocort? I have just begun reading about the GF lifestyle this morning in the files here. You people certainly a lot of information on the subject.
Have a great Easter weekend!
Carol
"Never pass up a bathroom and never trust a fart." - the late George Carlin