thanks for listening.
newbie
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
newbie
Greetings, I was recently dx with collagenous colitis after 3 mos of diarrhea (15+day). GI Doc suggested beginning with Pepto chewables and continuing Lomotil, which was prescribed earlier by PCP. If that doesn't help, begin Entocort. for the first couple of months (before dx) Lotomil helped greatly. Then things got worse and GI suggested adding Pepto or starting Entocort. I've been holding off on Entocort because I am worried about side effects but at this point I don't think I have a choice. I am having much more pain with each diarrhea event and feel very nauseous, fatigued, weak. I've lost almost 10 lbs. Saw my GI day before Thanksgiving and told him I wanted to continue Lomotil and he said he was fine with that 3xday but add the Pepto and give it time (a few weeks) to kick in. Today I felt so terrible had to cx a visit to friends for turkey dinner since I was having so many D events and nauseous. Took Lomotil and Pepto as prescribed and have had nausea on and off all day, along w/diarrhea. Also the pain with each D event over last 2 weeks has increased - it almost feels like contractions - coming in waves - yikes! Feel like I need to begin the Entocort because I feel worse even though I'm taking 2 meds. As for food intolerances, don't know if I have any. stopped drinking anything caffeinated. I feel at my wits end always feeling so lousy. Looking for feedback on effectiveness of Entocort, and any side effects.
thanks for listening.
thanks for listening.
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Joefnh
- Rockhopper Penguin
- Posts: 2478
- Joined: Wed Apr 21, 2010 8:25 pm
- Location: Southern New Hampshire
Hi Clare welcome to the group.. I'm sorry you are here due to this disease, but you certainly found the right group of people. I am not sure I would be doing half as well had I not found this site with the incredible knowledge and great people that exists here
It sounds like you are well on your way with a diagnosis and some meds to try. I do not have experience with the lotomil, but I did try pepto and Imodium, which did not work by themselves.
My story is similar to yours and was I was diagnosed last April and what helped the most was the Entocort at 9mg a day. I had very few side effects, but I have read that it can make some dizzy initially. Overall it took about 2 -3 weeks for the symptoms to resolve after starting the Entocort in conjunction with diet.
In conjuntion with the meds, the next step is to address what dietary issues are causing the ongoing irritation of your GI tract. For just about everyone with MC (CC & LC) it includes wheat gluten and most likely soy and possibly dairy. Each of us is different and responds to treatments in different ways, but as mentioned there are some common sensitivities and reactions to the meds. Overall Entocort seems to be the most common of the medications and it also appears to work quite well for MC.
Before achieving remission of this disease I lost about 40 pounds and found that I react quite strongly with wheat and soy products the most and somewhat to dairy. To maintain remission I need to follow a diet that is free of wheat and soy, this along with the meds has greatly reduced the pain and fatigue that this disease brings.
Again welcome to the group Clare, we look forward to your posts and hope you start feeling better soon.
--Joe
It sounds like you are well on your way with a diagnosis and some meds to try. I do not have experience with the lotomil, but I did try pepto and Imodium, which did not work by themselves.
My story is similar to yours and was I was diagnosed last April and what helped the most was the Entocort at 9mg a day. I had very few side effects, but I have read that it can make some dizzy initially. Overall it took about 2 -3 weeks for the symptoms to resolve after starting the Entocort in conjunction with diet.
In conjuntion with the meds, the next step is to address what dietary issues are causing the ongoing irritation of your GI tract. For just about everyone with MC (CC & LC) it includes wheat gluten and most likely soy and possibly dairy. Each of us is different and responds to treatments in different ways, but as mentioned there are some common sensitivities and reactions to the meds. Overall Entocort seems to be the most common of the medications and it also appears to work quite well for MC.
Before achieving remission of this disease I lost about 40 pounds and found that I react quite strongly with wheat and soy products the most and somewhat to dairy. To maintain remission I need to follow a diet that is free of wheat and soy, this along with the meds has greatly reduced the pain and fatigue that this disease brings.
Again welcome to the group Clare, we look forward to your posts and hope you start feeling better soon.
--Joe
Joe
Hi Clare,
Welcome to our internet family. In view of the fact that your symptoms are becomingly increasingly worse, if I were in your shoes, I would opt for the most effective "safe" medication available for treating MC, namely Entocort EC. The sooner you can stop the D, the better off you will be. Continued D will bring dehydration, depletion of electrolytes, weight loss, hemorrhoids, etc, (to say nothing of the misery and inconvenience involved), with nothing to gain, of course.
If you don't want to take the Entocort forever, it will almost surely be necessary for you to modify your diet, because while Entocort will suppress the inflammation that causes CC, it cannot stop new inflammation from being regenerated. In order to prevent the generation of new inflammation, diet changes are almost always necessary, in order to eliminate the foods that are causing the inflammatory reaction. As Joe mentioned, most of us are sensitive to all foods containing gluten, dairy, and/or soy. Unfortunately, when this disease is triggered, the genes that cause certain food sensitivities are almost always triggered, at the same time.
Pepto seems to work for some of us, (in conjunction with the diet, of course), but a few of us have adverse reactions to the bismuth subsalicylate in the Pepto-Bismol.
Not everyone with MC has nausea, but it was an almost constant problem for me. I would guess that possibly a third of us have nausea as a symptom, during reaction episodes.
Again, welcome aboard, and please feel free to ask anything.
Tex (Wayne)
Welcome to our internet family. In view of the fact that your symptoms are becomingly increasingly worse, if I were in your shoes, I would opt for the most effective "safe" medication available for treating MC, namely Entocort EC. The sooner you can stop the D, the better off you will be. Continued D will bring dehydration, depletion of electrolytes, weight loss, hemorrhoids, etc, (to say nothing of the misery and inconvenience involved), with nothing to gain, of course.
If you don't want to take the Entocort forever, it will almost surely be necessary for you to modify your diet, because while Entocort will suppress the inflammation that causes CC, it cannot stop new inflammation from being regenerated. In order to prevent the generation of new inflammation, diet changes are almost always necessary, in order to eliminate the foods that are causing the inflammatory reaction. As Joe mentioned, most of us are sensitive to all foods containing gluten, dairy, and/or soy. Unfortunately, when this disease is triggered, the genes that cause certain food sensitivities are almost always triggered, at the same time.
Pepto seems to work for some of us, (in conjunction with the diet, of course), but a few of us have adverse reactions to the bismuth subsalicylate in the Pepto-Bismol.
Not everyone with MC has nausea, but it was an almost constant problem for me. I would guess that possibly a third of us have nausea as a symptom, during reaction episodes.
Again, welcome aboard, and please feel free to ask anything.
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.
Hi there, I think Entocort is my next step.
lisa15601 wrote:Hi Claire,
I'm a newbie and our stories seem so similar. I have LC. I started taking entocort last week. I'm praying for a miracle.
Thanks everyone
thank you all for your warm welcome and support. I agree, Tex, that I am in danger of dehydration and that's not good. I was told by a friend (RN) that nausea is a symptom of dehydration. I will ask my doc to start the Entocort. in meantime, how do I find out what/if I have food intolerances? Is there a list posted somewhere of what I CAN eat?
from Clare (Happy Thanksgiving from chilly New England).
from Clare (Happy Thanksgiving from chilly New England).
WELCOME CLARE!!! 
I agree with Tex and Joe. Your best bet for quick remission is to take Entocort. Some have tried diet first and have had quick success using diet alone. I was initially reluctant to try Entocort, but I finally did after trying diet alone for a month. I haven't had any noticeable side effects from it. Entocort can give you back your life. For some of us, it can work quickly, in a few days, for others, such as myself, it can take 3-4 weeks.
It is necessary to change your diet in conjunction with taking Entocort, since Entocort suppresses the inflammation, but doesn't remove the cause of the inflammation. Making dietary changes will in most cases remove the cause.
Good luck with your decision. I'm sure that you are already reading posts on the board. That is the best way to educate yourself and learn how to manage this condition.
Gloria
I agree with Tex and Joe. Your best bet for quick remission is to take Entocort. Some have tried diet first and have had quick success using diet alone. I was initially reluctant to try Entocort, but I finally did after trying diet alone for a month. I haven't had any noticeable side effects from it. Entocort can give you back your life. For some of us, it can work quickly, in a few days, for others, such as myself, it can take 3-4 weeks.
It is necessary to change your diet in conjunction with taking Entocort, since Entocort suppresses the inflammation, but doesn't remove the cause of the inflammation. Making dietary changes will in most cases remove the cause.
Good luck with your decision. I'm sure that you are already reading posts on the board. That is the best way to educate yourself and learn how to manage this condition.
Gloria
You never know what you can do until you have to do it.
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Joefnh
- Rockhopper Penguin
- Posts: 2478
- Joined: Wed Apr 21, 2010 8:25 pm
- Location: Southern New Hampshire
Hi Clare, welcome again from New Hampshire and yes it is cold.. I think most of the area is expecting snow and ice tonight.
As far as determining food intolerance's, there are 2 methods. The first is just the process of elimination while keeping a food diary. For this start with the premise that you most likely are reacting to at least wheat (gluten) and possibly soy and dairy. Starting with some basic foods that do not have soy wheat or dairy in them, slowly add in one food that does have lets say dairy and see how well you tolerate it and record the results. Continue this for each questionable food type until you build a list of foods that you can and cannot tolerate.
The second way is that you could have testing done by Enterolb www.enterolab.com which depending on what tests are run determine which food groups and even your genetic profile related to certain food sensitivities.
A couple of great links on this site for safe meal recipes can be found at:
http://www.perskyfarms.com/phpBB2/viewforum.php?f=53
Dee's Kitchen
http://www.perskyfarms.com/phpBB2/viewf ... um.php?f=7
Another helpful list of foods to avoid can be found at:
http://www.perskyfarms.com/phpBB2/viewforum.php?f=52
Best wishes Clare & keep warm...
--Joe
As far as determining food intolerance's, there are 2 methods. The first is just the process of elimination while keeping a food diary. For this start with the premise that you most likely are reacting to at least wheat (gluten) and possibly soy and dairy. Starting with some basic foods that do not have soy wheat or dairy in them, slowly add in one food that does have lets say dairy and see how well you tolerate it and record the results. Continue this for each questionable food type until you build a list of foods that you can and cannot tolerate.
The second way is that you could have testing done by Enterolb www.enterolab.com which depending on what tests are run determine which food groups and even your genetic profile related to certain food sensitivities.
A couple of great links on this site for safe meal recipes can be found at:
http://www.perskyfarms.com/phpBB2/viewforum.php?f=53
Dee's Kitchen
http://www.perskyfarms.com/phpBB2/viewf ... um.php?f=7
Another helpful list of foods to avoid can be found at:
http://www.perskyfarms.com/phpBB2/viewforum.php?f=52
Best wishes Clare & keep warm...
--Joe
Joe
Dear Clare
Welcome from Honky-Konky Land (aka Hong Kong).
I agree that diet and Entocort is the most effective treatment - it certainly works for me - but it takes a long time to calm down ("heal") the gut.
I am now (for the second time) back down to one pill a day. The one obvious side effect I see (after long term use) is thinning of the skin.
Wishing you all the best for a speedy road to remission.
Best, ant
Welcome from Honky-Konky Land (aka Hong Kong).
I agree that diet and Entocort is the most effective treatment - it certainly works for me - but it takes a long time to calm down ("heal") the gut.
I am now (for the second time) back down to one pill a day. The one obvious side effect I see (after long term use) is thinning of the skin.
Wishing you all the best for a speedy road to remission.
Best, ant
Hello all,
i called my GI first thing this am and they are going to order Entocort. After all my holding off,"don't want to go on steroids"..."I can handle this myself" I am now crying "UNCLE" after experiencing an increased level of pain, nausea and D episodes. It's also becoming an issue at work. i have doubled up on lomotil today and am getting some tachycardia, which is also probably exacerbated by the dehydration. Most people I have spoken to never heard of this disease and think I just have IBS so It's nice to be understood. I will let keep you posted and thank you so much for your support!
Clare
i called my GI first thing this am and they are going to order Entocort. After all my holding off,"don't want to go on steroids"..."I can handle this myself" I am now crying "UNCLE" after experiencing an increased level of pain, nausea and D episodes. It's also becoming an issue at work. i have doubled up on lomotil today and am getting some tachycardia, which is also probably exacerbated by the dehydration. Most people I have spoken to never heard of this disease and think I just have IBS so It's nice to be understood. I will let keep you posted and thank you so much for your support!
Clare
Hi Clare, you have found the greatest place to help you live with mc. If you follow the wisdom of this board you will find remission. Entocort was a miracle drug for me and I will not hestitate to use it again in the future if I need it. JoAnn
Courage is being scared to death, but saddling up anyway. John Wayne
Clare,
If you doubled your lomotil dose, your tachycardia is probably from the lomotil. It contains atropine, which is supposed to prevent addicts from "abusing" the drug. Some of the possible effects of atropine include tachycardia, dizziness, nausea, blurred vision, loss of balance, dilated pupils, photophobia, dry mouth and potentially extreme confusion, etc. If your pupils are dilated, or you have any of these other symptoms, that's pretty strong evidence that your tachycardia is coming from the atropine in the lomotil. Your doctor should have mentioned that possibility to you.
The non-prescription "sister-drug", Imodium AD, does not contain atropine, so if you need a stronger dose, it might be a better choice. Be sure to use the original formulation, since some of the other versions contain lactose, or other undesirable ingredients.
Tex
If you doubled your lomotil dose, your tachycardia is probably from the lomotil. It contains atropine, which is supposed to prevent addicts from "abusing" the drug. Some of the possible effects of atropine include tachycardia, dizziness, nausea, blurred vision, loss of balance, dilated pupils, photophobia, dry mouth and potentially extreme confusion, etc. If your pupils are dilated, or you have any of these other symptoms, that's pretty strong evidence that your tachycardia is coming from the atropine in the lomotil. Your doctor should have mentioned that possibility to you.
The non-prescription "sister-drug", Imodium AD, does not contain atropine, so if you need a stronger dose, it might be a better choice. Be sure to use the original formulation, since some of the other versions contain lactose, or other undesirable ingredients.
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 Clare,
WELCOME to this wonderfully supportive and knowledgable forum. You've already received great advice from so many here. I've had MC for at least a decade and only last summer discovered the diet connection thanks to Enterolab and this wonderful forum. The doctors told me that there was no evidence that diet played a factor in controlling MC. Like you, I declined steroids, which is what they recommended after Pepto, etc. Since going gluten free in July, I have seen a slow, but steady decrease in my symptoms as my gut is healing, and I'm expecting that it will still take several months before going into full remission.
Doing this by diet alone takes enormous focus and discipline - it has been over 4 months now, and I'm still hoping not to have to resort to Entocort, but I certainly will not hesitate if I ever feel the need to. I'm retired, so I have the time to give this my full attention. Entocort has helped so many here, with seemingly no worrisome side effects, so I'm sure it is the best choice for you.
As has already been stated here, you also need to address the diet. For me, having the testing done at Enterolab was a very helpful step to take. I had already cut out gluten, dairy and soy, as I knew my gut could not tolerate them, but the big surprise was that I also tested positive for yeast. Don't know how I would have figured that out on my own. After I cut the yeast, I saw another substantial improvement in my symptoms.
All that said, I wish you the best of luck on your journey back to health - am so sorry you're having such a tough time of it. Look forward to reading about your progress as time goes by. Probably one of the hardest things is to be patient while healing, wish we had a magic wand to wave that would make it all go away:). Again WELCOME and good luck!!!
Love,
Kari
WELCOME to this wonderfully supportive and knowledgable forum. You've already received great advice from so many here. I've had MC for at least a decade and only last summer discovered the diet connection thanks to Enterolab and this wonderful forum. The doctors told me that there was no evidence that diet played a factor in controlling MC. Like you, I declined steroids, which is what they recommended after Pepto, etc. Since going gluten free in July, I have seen a slow, but steady decrease in my symptoms as my gut is healing, and I'm expecting that it will still take several months before going into full remission.
Doing this by diet alone takes enormous focus and discipline - it has been over 4 months now, and I'm still hoping not to have to resort to Entocort, but I certainly will not hesitate if I ever feel the need to. I'm retired, so I have the time to give this my full attention. Entocort has helped so many here, with seemingly no worrisome side effects, so I'm sure it is the best choice for you.
As has already been stated here, you also need to address the diet. For me, having the testing done at Enterolab was a very helpful step to take. I had already cut out gluten, dairy and soy, as I knew my gut could not tolerate them, but the big surprise was that I also tested positive for yeast. Don't know how I would have figured that out on my own. After I cut the yeast, I saw another substantial improvement in my symptoms.
All that said, I wish you the best of luck on your journey back to health - am so sorry you're having such a tough time of it. Look forward to reading about your progress as time goes by. Probably one of the hardest things is to be patient while healing, wish we had a magic wand to wave that would make it all go away:). Again WELCOME and good luck!!!
Love,
Kari
"My mouth waters whenever I pass a bakery shop and sniff the aroma of fresh bread, but I am also grateful simply to be alive and sniffing." Dr. Bernstein