Hi all.
I am a newbie to this site. I have read through a good portion of this website and am so grateful to see that I am not alone however selfish that sounds. I would never wish this kind of life on anyone. A short introduction might help in telling how I got here. About 4 years ago I broke my jaw and ended up having jaw surgery to fix a displaced TMJ disc. During the time of the surgery and several other procedures to try to reduce my pain I was eating ibuprofen like candy. Well after 2 years I began to have chronic D problems. Jumping forward I am miserable. I don't feel that I can be away from a bathroom for fear of having an accident and due to the urgency issue. I have had colonoscopies, blood work and biopsies. I have eliminated all red meat from my diet, no dairy, no leafy greens, sodas and just about anything else that I think my bother my colon. I have tried eliminating all gluten testing out the sensitivity issue. After two weeks I saw no real improvement. Should I have tried it for longer? The biopsy for celiacs was negative. I recently saw my gastro dr and after telling him that I would eat live roaches if it would help he had a game plan for me. First, he said the live roaches were not necessary. He said that he wanted to try me on Entocort and if that didn't work the next course of treatment is Lotronex. He stated that I should be able to tell a difference on the Entocort with in about 2 weeks. My dosing goes as follows, 3 a day for 2 months, 2 a day for 2 months and 2 a day for 2 months. I have been taking 3 a day for 7 days now and have seen a LITTLE improvement but not what I really was hoping for. I had a couple of really good days on day 5 and 6 and and not as good. I am still having a lot of bloating and other unpleasantries. Still having D but not the extent that I was having before however not great either. My dr stated that I will know if this drug will work after about 2 weeks. My question is this, for those of you who have used Entocort how long did it take for you to see consistant results? I have read other posts about those that started off with a starting med of straight prednisone and wondering if I should approach my dr about this and giving it a try again. Especially since I am barely into my 6 months regime. My dr told me to try to the Entocort for a couple of weeks and if that didn't work to switch to the Lortonex. I hate to give up on the Entocort so soon but am not sure if others had to wait a while for it to work too. I was very hopeful on day 5 and 6 and then the last 2 days I have gone downhill a little. Still not as bad as I was before so I am a bit confused. I know it has not been 2 weeks yet but am anxious none the less. Any input would be greatly appreciated. Thank you.
How long does it take for Entocort to start working?
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi Geargirl,
Welcome to the board. A lot of members don't bother to check many of these forums down here regularly, they're more for archived information, so I'm moving your post to where it will be more easily noticed, on the "Main Message Board". Hopefully, you'll get more responses here.
There are other members here who attribute their MC to heavy or regular usage of ibuprofen. I doubt that red meat would cause any problems for your digestive system, (as far as MC is concerned), but dairy and raw vegetables definitely cause problems for many of us. The most likely culprit, though, is gluten, if you are searching for dietary triggers. All but a very few of us test negative to celiac diagnostic tests, but most of us are highly gluten sensitive, and most GI docs have no understanding of this issue. In fact, most GI docs do not believe that it is even possible for a patient to be gluten sensitive, if that patient fails to test positive for celiac disease.
If it were me, I think that I would allow a lot more than two weeks for Entocort to work, before switching to something like Lotronex. I would try increasing the dosage of Entocort, if I were impatient, rather than stopping it that quickly. It takes many of us longer than two weeks to respond to it.
As far as the GF diet is concerned, some people see results within a couple of weeks, but some of us have taken much longer. Some of us, ( myself included), needed roughly a year to respond to the diet. Many of us here control our symptoms by diet alone, many use meds, and some use a combination of diet and meds.
If you are serious about being willing to eat roaches in order to find relief from your symptoms, there is a treatment based on the ingestion of helminth eggs, (pig whip worms), which actually works. However, you have to refresh the treatment every month, by swallowing more eggs, since the helminths cannot reproduce in the human body. Apparently they work by distracting the immune system, so that it has no time to get bored, and generate autoimmune reactions. They can be purchased, without prescription, incidentally.
Before you resort to that, though, I would suggest a more conventional treatment program, based on your choice of either diet, or medications. As I mentioned, some of us use a combination of diet and meds, but everyone here works out a treatment plan that fits their lifestyle, and their symptoms, and fine tunes it as they go. Entocort doesn't work for everyone, but basically, it is one of the most effective, and one of the safest meds available to treat IBDs, (Inflammatory Bowel Diseases).
Did you read this old thread about Lotronex?
http://www.perskyfarms.com/phpBB2/viewtopic.php?t=6104
Welcome aboard,
Tex
Welcome to the board. A lot of members don't bother to check many of these forums down here regularly, they're more for archived information, so I'm moving your post to where it will be more easily noticed, on the "Main Message Board". Hopefully, you'll get more responses here.
There are other members here who attribute their MC to heavy or regular usage of ibuprofen. I doubt that red meat would cause any problems for your digestive system, (as far as MC is concerned), but dairy and raw vegetables definitely cause problems for many of us. The most likely culprit, though, is gluten, if you are searching for dietary triggers. All but a very few of us test negative to celiac diagnostic tests, but most of us are highly gluten sensitive, and most GI docs have no understanding of this issue. In fact, most GI docs do not believe that it is even possible for a patient to be gluten sensitive, if that patient fails to test positive for celiac disease.
If it were me, I think that I would allow a lot more than two weeks for Entocort to work, before switching to something like Lotronex. I would try increasing the dosage of Entocort, if I were impatient, rather than stopping it that quickly. It takes many of us longer than two weeks to respond to it.
As far as the GF diet is concerned, some people see results within a couple of weeks, but some of us have taken much longer. Some of us, ( myself included), needed roughly a year to respond to the diet. Many of us here control our symptoms by diet alone, many use meds, and some use a combination of diet and meds.
If you are serious about being willing to eat roaches in order to find relief from your symptoms, there is a treatment based on the ingestion of helminth eggs, (pig whip worms), which actually works. However, you have to refresh the treatment every month, by swallowing more eggs, since the helminths cannot reproduce in the human body. Apparently they work by distracting the immune system, so that it has no time to get bored, and generate autoimmune reactions. They can be purchased, without prescription, incidentally.
Before you resort to that, though, I would suggest a more conventional treatment program, based on your choice of either diet, or medications. As I mentioned, some of us use a combination of diet and meds, but everyone here works out a treatment plan that fits their lifestyle, and their symptoms, and fine tunes it as they go. Entocort doesn't work for everyone, but basically, it is one of the most effective, and one of the safest meds available to treat IBDs, (Inflammatory Bowel Diseases).
Did you read this old thread about Lotronex?
http://www.perskyfarms.com/phpBB2/viewtopic.php?t=6104
Welcome aboard,
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.
Geargirl
Welcome to our family from a relative newcomer to this forum. We're so glad you found us and I think the feeling will be mutual.
I'm sorry I can't help with your question because once I found the Potty People, I went GF and am not taking meds! My GI gave me the option of Lialda or Entocort. I asked if I could have over the weekend to think about it and she said, "Sure, go on the internet." So I did and found this forum, thank heavens.
DISCLAIMER: I am not a doctor and don't play one on TV.
LDN July 18, 2014
Joan
LDN July 18, 2014
Joan
-
barbaranoela
- Emperor Penguin
- Posts: 5394
- Joined: Wed May 25, 2005 6:11 pm
- Location: New York
geargirl
for me I have to say Entocort was not a good meds. to try---
within 2 dayz, of using Entocort, I started to develope neurological issues---such as slured speech and a need to have the walls support me as I tried to walk---
The familiar Xpression---what works for one doesnt necessarily work for the same for the other---
Happy to U to a very informative group of friends--
Barbara--MCC--remission
for me I have to say Entocort was not a good meds. to try---
within 2 dayz, of using Entocort, I started to develope neurological issues---such as slured speech and a need to have the walls support me as I tried to walk---
The familiar Xpression---what works for one doesnt necessarily work for the same for the other---
Happy to
U to a very informative group of friends-- Barbara--MCC--remission
the fruit of the spirit is love, joy, peace, patience, kindness, goodness, faithfulness and self-control
to the board! I'm glad you've found a place to air out your frustrations and ask for help from those who have/are experiencing the same thing you are/have. It's lonely when no one understands!I know you will find ideas and suggestions from everyone here - we are all different so the diets, meds, etc. work differently for all of us!
Don't be afraid to ask questions - that's how we all learn! It will get better!
Mars
"Let us rise up and be thankful, for if we didn't learn a lot today, at least we learned a little, and if we didn't learn a little, at least we didn't get sick, and if we got sick, at least we didn't die; so, let us all be thankful." -- Buddha
Entocort worked for me, but it was several years ago and I don't remember how long it took to get back to normal. I was one of those whose MC resulted from overuse of NSAIDs. Since then I've had knee replacement surgery and no longer have the pain that caused the overuse. I think I took the Entocort for quite a while (a year?) before feeling confident enough to taper off! Well, good luck to you. Stick with it for a while longer. And welcome to our group!
kathy
Thanks to everyone for the all of the invaluable information. Thank you Tex for taking the time to educate me on several areas where I am struggling. Although a lot of my questions were answered, I now have a couple more. First off I just have to say.....IT IS ALL MAKING SENSE NOW!!! FINALLY!!!
I have a couple of questions regarding the gluten issue. I had a biopsy and blood test that showed no Celiacs. I do understand the concept of the sensitivity vs actually having Celiacs disease. It sounds like I need to give gf a try again and stick with it for much longer. I was just under the impression that if I was sensitive to gluten that it would show results a lot faster. I have made a lot of dietary changes since I was originally being treated for IBS-D (turns out that was NOT the case at all). I eat no red meat, no fried foods, generally no diary however a little sometimes doesn't bother me. Select veggies and only if they are cooked. I do however drink a lot of soy milk (gf) and I don't seem to have any problems with it.
I have noticed on other postings that some have used the Enterolabs. Is this worth doing for food sensitivity testing? Have others found it to be accurate for the most part?
I had seen the posting on the Lotronex after doing a search. I love this forum!
I am going to stick it out with the Entocort and not make any changes for at least 2 months. I too thought that 2 weeks seemed a bit of a short trial period. I will re-evaluate it again at that time. I did see where some people had done a loading dose of Prednisone and then integrated the Entocort. Makes sense and I will keep that tucked away just in case I need to present that to my gastro dr later on down the road.
Should I start on the probiotics as well? My gastro had recommend the VSL-#3 as well.
Overall it sounds like my best course of treatment at this time is to continue with the Entocort and start on a gf diet like.....tomorrow. Thank you again to all that responded and welcomed me in. I am sure that I will have more questions in the future. Thanks again for getting me jump started. I am just so pleased to find others like me. (unfortunately)
Thanks again and keep up the good work!
geargirl
You're very welcome, and since you're a good researcher, you should be able to get results faster than most.
You mentioned IBS - our cumulative experience has shown that in many cases, the only difference between a diagnosis of IBS, and a diagnosis of MC, is a biopsy. IOW, unless a doctor knows how to look for MC, he or she is not going to find it, and IBS is the default diagnosis. Doctors usually recommend a high fiber diet for IBS, and a high fiber diet just makes MC worse, in most cases.
As far as we can tell, the stool testing offered by Enterolab is the only practical way to go, if you want to check for food intolerances. When you think about it, it's sort of a no-brainer. Why do most doctors look for food antibodies in the blood, (as in the case of celiac disease, for example), when the antibodies are actually being generated in the gut, not in the blood? The answer is, they do it because it's quick and easy. The blood tests are not very sensitive, however. The celiac blood tests, for example, normally cannot reliably detect antibodies in the blood, after a patient has been on the GF diet for several weeks. The stool tests at Enterolab, however, can still detect gluten antibodies reliably, up to a year after a patient has adopted the GF diet. They're amazingly sensitive. I'm not aware of anyone on this board, (or any of the celiac boards, for that matter), who has ever disputed the accuracy of their test results from Enterolab. On the other hand, the boards have many people complaining about the inaccuracy of the blood tests, and their inability to reliably detect gluten sensitivity.
Some people do see results on the GF diet in just a few weeks. As Barbara and Mars pointed out, we are all different in how things affect us, and in how we react. Though the medical profession has attempted to describe MC in a very concise manner, the truth is, MC is not a very "well behaved" disease, from a technical viewpoint. IOW, there is a very wide variation in causes, symptoms, sensitivities, and all sorts of aspects of the disease. As a result, tailoring the treatment to the individual patient is almost a necessity. Most doctors have trouble comprehending that concept, though, and they usually try to use a "one treatment fits all" approach for all of their patients, though each doctor has his or her own preferred "schedule of treatments", of course.
Probiotics are an interesting issue. We've had mixed results with them. They're recommended for people with GI issues, (even Dr. Fine recommends taking a good, (safe), probiotic, to help control the symptoms of MC), but unfortunately, no one seems to be able to recommend a specific probiotic that is actually beneficial for very many people. Many of our members have tried many different types of probiotics over the years, but if anyone here has actually found one that they felt was very beneficial for them, I can't recall that actually being reported. Dr. Fine himself cannot, (or will not), recommend a probiotic either, since at last report, he has never been able to find one that worked well for him, personally, (he has MC himself). The Food Doc, (if you're familiar with his blogs), recommends VSL-#3, and at least a couple of members here have tried it, but I have yet to see someone post a discussion about truly favorable results from it, or any other probiotic, for that matter. Occasionally, someone will post about adverse experiences from certain probiotics, though I don't recall seeing any adverse results from using VSL-#3.
A combination treatment, (a med plus the diet) , usually gets the fastest results, as far as controlling the symptoms is concerned, and you can fine tune your treatment, as you go. Please feel free to ask anything, as most of us have been through just about anything that can happen with MC, (such as the embarrassing accidents, etc.), and one thing we've learned is that no one truly understands the disease, unless they have it, so we definitely understand why you pointed out how pleased you are to find others like you - we all feel exactly the same way.
Tex
You mentioned IBS - our cumulative experience has shown that in many cases, the only difference between a diagnosis of IBS, and a diagnosis of MC, is a biopsy. IOW, unless a doctor knows how to look for MC, he or she is not going to find it, and IBS is the default diagnosis. Doctors usually recommend a high fiber diet for IBS, and a high fiber diet just makes MC worse, in most cases.
As far as we can tell, the stool testing offered by Enterolab is the only practical way to go, if you want to check for food intolerances. When you think about it, it's sort of a no-brainer. Why do most doctors look for food antibodies in the blood, (as in the case of celiac disease, for example), when the antibodies are actually being generated in the gut, not in the blood? The answer is, they do it because it's quick and easy. The blood tests are not very sensitive, however. The celiac blood tests, for example, normally cannot reliably detect antibodies in the blood, after a patient has been on the GF diet for several weeks. The stool tests at Enterolab, however, can still detect gluten antibodies reliably, up to a year after a patient has adopted the GF diet. They're amazingly sensitive. I'm not aware of anyone on this board, (or any of the celiac boards, for that matter), who has ever disputed the accuracy of their test results from Enterolab. On the other hand, the boards have many people complaining about the inaccuracy of the blood tests, and their inability to reliably detect gluten sensitivity.
Some people do see results on the GF diet in just a few weeks. As Barbara and Mars pointed out, we are all different in how things affect us, and in how we react. Though the medical profession has attempted to describe MC in a very concise manner, the truth is, MC is not a very "well behaved" disease, from a technical viewpoint. IOW, there is a very wide variation in causes, symptoms, sensitivities, and all sorts of aspects of the disease. As a result, tailoring the treatment to the individual patient is almost a necessity. Most doctors have trouble comprehending that concept, though, and they usually try to use a "one treatment fits all" approach for all of their patients, though each doctor has his or her own preferred "schedule of treatments", of course.
Probiotics are an interesting issue. We've had mixed results with them. They're recommended for people with GI issues, (even Dr. Fine recommends taking a good, (safe), probiotic, to help control the symptoms of MC), but unfortunately, no one seems to be able to recommend a specific probiotic that is actually beneficial for very many people. Many of our members have tried many different types of probiotics over the years, but if anyone here has actually found one that they felt was very beneficial for them, I can't recall that actually being reported. Dr. Fine himself cannot, (or will not), recommend a probiotic either, since at last report, he has never been able to find one that worked well for him, personally, (he has MC himself). The Food Doc, (if you're familiar with his blogs), recommends VSL-#3, and at least a couple of members here have tried it, but I have yet to see someone post a discussion about truly favorable results from it, or any other probiotic, for that matter. Occasionally, someone will post about adverse experiences from certain probiotics, though I don't recall seeing any adverse results from using VSL-#3.
A combination treatment, (a med plus the diet) , usually gets the fastest results, as far as controlling the symptoms is concerned, and you can fine tune your treatment, as you go. Please feel free to ask anything, as most of us have been through just about anything that can happen with MC, (such as the embarrassing accidents, etc.), and one thing we've learned is that no one truly understands the disease, unless they have it, so we definitely understand why you pointed out how pleased you are to find others like you - we all feel exactly the same way.
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 Gear Girl~! 
Glad you found us!
I have been on Entocort for several years. I think it only took a few days for me to see an improvement, but everyone is different. I was down to one cap every other day until my teaching job was cut back, and the stress became terrible. Now I take 2/day....sigh.....good luck! JJ
Glad you found us!I have been on Entocort for several years. I think it only took a few days for me to see an improvement, but everyone is different. I was down to one cap every other day until my teaching job was cut back, and the stress became terrible. Now I take 2/day....sigh.....good luck! JJ
Thanks again for all of the support and replies.
I am going order the Enterolab tests. Probably going to test for just about everything since I really want to do most of my control with diet vs medication if I can help it. Good to know that so many others had such success with them. I see where Marilyn stated that it took her around 3 months before noticing a difference going GF. How nice would it be to know for sure vs trial and error this time around! I can do any diet modifications neccessary, I just so much want a normal life back. I want to be able to get out and about and not worry about where the next bathroom is. I am very familiar with the unpleasant and embarrassing accidents that can happen. I just about come unglued on the inside when I feel any tummy movement and am in public. I panick which I know doesn't help matters either! I do however know where every bathroom is in my town. Wish that was an Olympic sport.....Bathroom Mapping. I am sure I would take the Gold.
I have decided to try just one thing at a time at this point and will wait on the probiotics for now. I have tried them before and didn't feel that they helped at all. In fact I felt a little worse when I had taken them but understand the idea behind them so thought it was best to keep trying.
I think between the lab testing and continuing on the Entocort I am on the right track. I have been on Entocort for 2 full weeks now. I am noticing a bit of difference however like I have said before, I am not where I want to be. For those of you who are stable, do you find that you can venture away from a bathroom with confidence?
Once again, thanks to everyone for all of their information and personal experiences. It is so good to know that I am not alone. (I know i know...I keep repeating myself) It is good to know I can ask questions and others know what I am going through. I am sure I will have more questions along the way but thanks to all of you, I am on the right track to feeling better and gaining confidence again.
geargirl
I am going order the Enterolab tests. Probably going to test for just about everything since I really want to do most of my control with diet vs medication if I can help it. Good to know that so many others had such success with them. I see where Marilyn stated that it took her around 3 months before noticing a difference going GF. How nice would it be to know for sure vs trial and error this time around! I can do any diet modifications neccessary, I just so much want a normal life back. I want to be able to get out and about and not worry about where the next bathroom is. I am very familiar with the unpleasant and embarrassing accidents that can happen. I just about come unglued on the inside when I feel any tummy movement and am in public. I panick which I know doesn't help matters either! I do however know where every bathroom is in my town. Wish that was an Olympic sport.....Bathroom Mapping. I am sure I would take the Gold.
I have decided to try just one thing at a time at this point and will wait on the probiotics for now. I have tried them before and didn't feel that they helped at all. In fact I felt a little worse when I had taken them but understand the idea behind them so thought it was best to keep trying.
I think between the lab testing and continuing on the Entocort I am on the right track. I have been on Entocort for 2 full weeks now. I am noticing a bit of difference however like I have said before, I am not where I want to be. For those of you who are stable, do you find that you can venture away from a bathroom with confidence?
Once again, thanks to everyone for all of their information and personal experiences. It is so good to know that I am not alone. (I know i know...I keep repeating myself) It is good to know I can ask questions and others know what I am going through. I am sure I will have more questions along the way but thanks to all of you, I am on the right track to feeling better and gaining confidence again.
geargirl
on getting the Enterolab tests. They do greatly simplify decision making, and they eliminate the need for second guessing about your diet. Be aware though, that most insurance companies will not pay for them, unless your doctor orders the tests, (and some will not cover them even if they are ordered by a doctor), since they are relatively new technology, and not widely recognized in the medical industry.Trust me, if you want to get your life back, you will, (it just takes some perseverance, and attention to detail, if you choose to go the diet route). Most of us here now lead completely normal lives, other than the changes our treatment program requires, (that is, either daily meds, or strictly following a diet), and there are many of us who control our symptoms by diet alone. Unless we slip up on our diet, we are completely normal, in every way, (as normal as someone who considers herself or himself part of a family who refer to themselves as "Potty People", can be).geargirl wrote:For those of you who are stable, do you find that you can venture away from a bathroom with confidence?
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.
Yes, a nearly normal life is possible once you're stabilized. I'm commuting about 1 1/2 hours each way to a conference by train and bus this week. I haven't even considered where the bathrooms are. My biggest concern has been what I can bring for lunch each day - that's why I've put "nearly" in front of normal life. For me, eating away from home will never be normal again because I have so many intolerances.
Gloria
Gloria
You never know what you can do until you have to do it.
Oops! Yep, I forgot about the eating out problem, because I almost never do that, unless I'm doing the cooking. Eating out is definitely not a "normal" experience, if you're on the diet.
Tex
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.