Hi all...
Sorry for opening a new topic, but didn't know where to write else..so hope it's not a problem.
I've got some questions about the medicine's, food and all the other things, cause for now..I'm a little bit lost i think.
M diagnosed with MC for 2 months now (after to many trips around the world, 6 different types of antibiotics, stomachtyphus, dysentria, a lot of D/C, stomach pain and blood in the feces (kind of a short summary;)). Thank God I did found this board at the very first day..so I started a Gluten/dairy-free diet, in combination with entocort.
After 2 days I felt much better...and I allready started to reduce the entocort..till that day I forget to take it at all. Pretty stupid...and since that moment it became worse and worse. So..back to the old amount of Entocort..and also to the a Nature-doctor (dont know his real title..but he finished normal med-school and after that also a n natural-med-school)
He did some food-allergic-test..and it seemed that I responsed to gluten, peanuts, dairy, citrusfruit, shellfish and sugar. Well..not such a big problem, cause I allready started that diet ofc:) (maybe interesting..he told me that he's able to take the food-allergics away with accupuncture..m going to start this friday...don't really believe it, but hé, how great would it be to eat Ben&Jerry's again:D)
At the same time my internist told me to start with Prednison for 3 weeks..cause the entocort didnt seem to work anymore. Didnt like that idea..so, went back to the nature-doctor who gave me curcuma 600mg-tablets..to try in combination with entocort.
I've been trying that for a week now..and it really dont seems to do anyting. Yesterday I did had a lot of stomach pain..and after that there was a lot of blood en mucus when i'd to go to the T. .
So..this morning I decided to start with the Prednison...
And now..dont know it anymore. Do i've to wait to see what the prednison is going to do? Or is that blood and pain something to worry about and should I call the internist again. This because I did read somewhere that blood is not a symptomn of MC..so i thought it could maybe still be the Shigella that i had 5 months ago in Ghana?
Sorry for all this questions..sounds pretty chaotic i guess..but hope you maybe do have some advices...
Mariska
Don't know what to do?
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Hi Mariska,
Starting a new topic is the correct way to enter your post. Thank you for posting it.
Yes, you are correct, blood in the stool is not normally a symptom of MC. The inflammation and diarrhea that is associated with MC can cause hemorrhoids, and they can cause bleeding, but hemorrhoids should have been noted on your endoscopy report after the colonoscopy exam. It's certainly possible that parasites or even a C. diff infection could be causing most of your symptoms. Neither Entocort (budesonide) nor prednisone is going to help if you have a parasite or bacterial infection.
Based on your symptoms, if I were in your shoes, I believe that I would ask my internist to do some stool tests to rule out a parasite or C. diff infection. C. diff especially, can be difficult to diagnose sometimes, and occasionally 2 or 3 stool cultures have to be done before a positive result will show up.
If you have MC, then your doctor's claim that he can remove all your food sensitivities with acupuncture is wishful thinking. He might be able to make you feel as though you are not affected by them (this is called tolerance therapy). And some food sensitivities can fade away with time without intervention, but if you are sensitive to gluten and or/casein, then you will always produce antibodies to them if you eat them, even if you do not show clinical symptoms.
I hope that you can convince your doctor to do the stool culture tests that you need. Please keep us updated on your progress.
Tex
Starting a new topic is the correct way to enter your post. Thank you for posting it.
Yes, you are correct, blood in the stool is not normally a symptom of MC. The inflammation and diarrhea that is associated with MC can cause hemorrhoids, and they can cause bleeding, but hemorrhoids should have been noted on your endoscopy report after the colonoscopy exam. It's certainly possible that parasites or even a C. diff infection could be causing most of your symptoms. Neither Entocort (budesonide) nor prednisone is going to help if you have a parasite or bacterial infection.
Based on your symptoms, if I were in your shoes, I believe that I would ask my internist to do some stool tests to rule out a parasite or C. diff infection. C. diff especially, can be difficult to diagnose sometimes, and occasionally 2 or 3 stool cultures have to be done before a positive result will show up.
If you have MC, then your doctor's claim that he can remove all your food sensitivities with acupuncture is wishful thinking. He might be able to make you feel as though you are not affected by them (this is called tolerance therapy). And some food sensitivities can fade away with time without intervention, but if you are sensitive to gluten and or/casein, then you will always produce antibodies to them if you eat them, even if you do not show clinical symptoms.
I hope that you can convince your doctor to do the stool culture tests that you need. Please keep us updated on your progress.
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.
Tex...
Thank you so much for your quick response..
Think I'll call the doctor tomorrow to get some stool-tests..(they allready did that 4-5 ago (before MC was diagnosed) and they saw some rests of Shigella and E.coli..which made me pretty sick in Ghana. But, because they give me some metronidazol overthere..and because the micro-biologue said it was just a small rest..they thought i wouldn't need a antibiotic again. Then..2 weeks later with the endoscopie they diagnosed the MC....(and actually, my internist says blood càn be part of MC...
Hemorrhoids would be n option...but they didnt find anything like that with the endoscopie..and also cause it seems like the blood and the heavy pain are coming together doesnt seems to me like hemorrhoids. But...it's all possible ofc.
Ok..Mr. the nature-doctor was a little bit to optimisic I gues..and so was I. I'll see what's it going to be friday..
Thanks again for your response..! Very happy to found this board..were people really understand what's happening and all..
Mariska
Thank you so much for your quick response..
Think I'll call the doctor tomorrow to get some stool-tests..(they allready did that 4-5 ago (before MC was diagnosed) and they saw some rests of Shigella and E.coli..which made me pretty sick in Ghana. But, because they give me some metronidazol overthere..and because the micro-biologue said it was just a small rest..they thought i wouldn't need a antibiotic again. Then..2 weeks later with the endoscopie they diagnosed the MC....(and actually, my internist says blood càn be part of MC...
Hemorrhoids would be n option...but they didnt find anything like that with the endoscopie..and also cause it seems like the blood and the heavy pain are coming together doesnt seems to me like hemorrhoids. But...it's all possible ofc.
Ok..Mr. the nature-doctor was a little bit to optimisic I gues..and so was I. I'll see what's it going to be friday..
Thanks again for your response..! Very happy to found this board..were people really understand what's happening and all..
Mariska
Mariska,
Regarding desensitization for allergies: It's possible to induce tolerance to allergens so that we do not produce severe IgE-based reactions (the type that cause anaphylactic shock), and this can be very helpful for preventing life-threatening reactions. But research shows that when this is done for food sensitivities, we continue to produce antibodies in our intestines, and we continue to accumulate intestinal damage, even though we may not show clinical symptoms. The result is that we feel fine, but we are continuing to damage our intestines if we continue to eat those foods.
You are very welcome.
Tex
Regarding desensitization for allergies: It's possible to induce tolerance to allergens so that we do not produce severe IgE-based reactions (the type that cause anaphylactic shock), and this can be very helpful for preventing life-threatening reactions. But research shows that when this is done for food sensitivities, we continue to produce antibodies in our intestines, and we continue to accumulate intestinal damage, even though we may not show clinical symptoms. The result is that we feel fine, but we are continuing to damage our intestines if we continue to eat those foods.
You are very welcome.
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, Mariska,
I've had a tough time with my symptoms on entocort alone. I read posts here and see many reach remission from diet and entocort. I've had to take 6mg of entocort and 4 Peptos a day to maintain, and still react if I'm not uber careful. (I'm still on the rice, meat and mushy veg diet). It's been 6 months for me, although I am switching GIs. They tested all those things with me, and I made them do it twice. ;) But I still wonder if they missed something as I don't seem to be responding as well as some I read.
Although, I suspect mine might have been a "bad case" as I had enough lymphocytes to present visible white clusters. How long did your go undiagnosed? Do you think that might have made a difference?
What I'm trying to decide now is, would I rather the D or do I continue with my meds as I'm suspecting the Pepto may be causing CNS stuff. Sigh.
I've been researching acupuncture. It's an interesting procedure to be sure. I found it doubly interesting that my insurance covers it.
I've had a tough time with my symptoms on entocort alone. I read posts here and see many reach remission from diet and entocort. I've had to take 6mg of entocort and 4 Peptos a day to maintain, and still react if I'm not uber careful. (I'm still on the rice, meat and mushy veg diet). It's been 6 months for me, although I am switching GIs. They tested all those things with me, and I made them do it twice. ;) But I still wonder if they missed something as I don't seem to be responding as well as some I read.
Although, I suspect mine might have been a "bad case" as I had enough lymphocytes to present visible white clusters. How long did your go undiagnosed? Do you think that might have made a difference?
What I'm trying to decide now is, would I rather the D or do I continue with my meds as I'm suspecting the Pepto may be causing CNS stuff. Sigh.
I've been researching acupuncture. It's an interesting procedure to be sure. I found it doubly interesting that my insurance covers it.
Hi Jennifer,
...When i read your message it feels like you having the same kind of questions about all that kind of different type of treatments. The problem is ofc that it's soo hard to find out what really triggers the pain, D and other anoying stuff.
So..you're using Pepto and entrocort? Maybe a stupid question..but what's pepto? (didnt hear anything about that, here in Holland)
For now..i'm using Prednisolon for only 4 days..and meen, it's like drugs
M not feeling that sleepy anymore..and didn't had D for 3 days. A little pain,C and fever last night..but i'm definitly starting to feel better:) It's only for 20 days..and after that 've to go back to the entrocort. Maybe that's also n option for you? I know that its medicin with a lot of side-effects..but if it does work and it's only for 20 days..wouldn't be that bad as having an active infection all the time, I guess.
And what kind of things are you thinking about when your'e talking about 'missing things'? Or don't have a clue at all? (Oh men..how great would be to be an internist yourself..
)
I did had my first acupunture this morning..and now i've to avoid dairy for 25 hours (like I allready didnt do that) and then I should be able to eat it again. Hmm..don't know if I dare..especially after reading Tex his reply. But..if your insurence is covering it..why not giving it a try:)?!
And oh, when I called my local-doctor this week to ask for n new Shigella test, she told me that the chance of still having that bacterie was really small. She thought that the MC was developping in a Macro-colitis like Crohn or Colitis Ulcerosa, because of all that blood, fluim and fever. Eh ok? Is that possible?
Hope you feel better soon...
Mariska
...When i read your message it feels like you having the same kind of questions about all that kind of different type of treatments. The problem is ofc that it's soo hard to find out what really triggers the pain, D and other anoying stuff.
So..you're using Pepto and entrocort? Maybe a stupid question..but what's pepto? (didnt hear anything about that, here in Holland)
For now..i'm using Prednisolon for only 4 days..and meen, it's like drugs
M not feeling that sleepy anymore..and didn't had D for 3 days. A little pain,C and fever last night..but i'm definitly starting to feel better:) It's only for 20 days..and after that 've to go back to the entrocort. Maybe that's also n option for you? I know that its medicin with a lot of side-effects..but if it does work and it's only for 20 days..wouldn't be that bad as having an active infection all the time, I guess.
And what kind of things are you thinking about when your'e talking about 'missing things'? Or don't have a clue at all? (Oh men..how great would be to be an internist yourself..
)I did had my first acupunture this morning..and now i've to avoid dairy for 25 hours (like I allready didnt do that) and then I should be able to eat it again. Hmm..don't know if I dare..especially after reading Tex his reply. But..if your insurence is covering it..why not giving it a try:)?!
And oh, when I called my local-doctor this week to ask for n new Shigella test, she told me that the chance of still having that bacterie was really small. She thought that the MC was developping in a Macro-colitis like Crohn or Colitis Ulcerosa, because of all that blood, fluim and fever. Eh ok? Is that possible?
Hope you feel better soon...
Mariska
Mariska,
"Pepto" stands for Pepto-Bismol, a brand of bismuth subsalicylate, which is a popular anti-diarrheal medication that's available without a prescription in this country. Apparently due to European laws, it isn't available in most European countries.
Regarding your doctor's silly comment about the chances of having a Shigella infection again: The chances of having microscopic colitis is really small also, but we all have it, so obviously her comment is pointless.
Tex
"Pepto" stands for Pepto-Bismol, a brand of bismuth subsalicylate, which is a popular anti-diarrheal medication that's available without a prescription in this country. Apparently due to European laws, it isn't available in most European countries.
Regarding your doctor's silly comment about the chances of having a Shigella infection again: The chances of having microscopic colitis is really small also, but we all have it, so obviously her comment is pointless.
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.
Ah..I see. Guess it's something like the Loperamide we know here?
And haha, yes..you're so right about that. I don't even believe that she actually knows what MC is about...especially after saying that 'changing in Crohn' thing.
But to be honest...after reading a lot of topics over here..m starting to think that probably the cause of not feeling any better, is myself. Besides not eating Gluten, Sugar, Dairy and the other things the nature-doctor noticed an allergic-reaction on, I do eat everything. Well, not everything.. but I mean most kind of vegetables, legumes, and fruit (only not the tropical one's), soy (didnt had n alergic reaction on that), and nuts.
I did read that a lot of you do have problems with the vegetables en legumes..but actually, I really don't like the idea of skipping al this natural vitamins and eating rice, chicken and apple(?) only...
So..maybe I shouldnt complain that much...and start to accept (after all your story's) that Ben and Jery's is not the worst thing not to eat anymore
And haha, yes..you're so right about that. I don't even believe that she actually knows what MC is about...especially after saying that 'changing in Crohn' thing.
But to be honest...after reading a lot of topics over here..m starting to think that probably the cause of not feeling any better, is myself. Besides not eating Gluten, Sugar, Dairy and the other things the nature-doctor noticed an allergic-reaction on, I do eat everything. Well, not everything.. but I mean most kind of vegetables, legumes, and fruit (only not the tropical one's), soy (didnt had n alergic reaction on that), and nuts.
I did read that a lot of you do have problems with the vegetables en legumes..but actually, I really don't like the idea of skipping al this natural vitamins and eating rice, chicken and apple(?) only...
So..maybe I shouldnt complain that much...and start to accept (after all your story's) that Ben and Jery's is not the worst thing not to eat anymore
We limit our diet until our digestive system has time to heal, and then many of us can slowly add many/most fruits and vegetables back into our diet, as long as we avoid the foods that cause us to react.
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.
Miraska,
Hello and welcome to this forum where you will get lots of help.
Is the acupuncture treatment called N.A.E.T.? If so, I went through the series of treatments and so did a few others here. I was supposedly cleared of soy, dairy, and eggs. This was about a year after my initial diagnosis and I had been on Entocort for several months. I have to say that I think it did help, but I don't think I would run out and eat a bowl of ice cream. I still don't. It allowed be to put eggs back in my diet, but I still may have only one a week, exept I can bake with eggs without a problem. I may have a spoonful of ice cream here and there, but that's about it. It helps when I go out to eat, I can have a little real butter on a baked potato without issues. As far as gluten goes, I wouldn't even try. If I bump into something bad, or cross contamination I'm OK. So, I think the treatment may be worth a try, but my recommendation would be to still be very careful.
Nancy
Hello and welcome to this forum where you will get lots of help.
Is the acupuncture treatment called N.A.E.T.? If so, I went through the series of treatments and so did a few others here. I was supposedly cleared of soy, dairy, and eggs. This was about a year after my initial diagnosis and I had been on Entocort for several months. I have to say that I think it did help, but I don't think I would run out and eat a bowl of ice cream. I still don't. It allowed be to put eggs back in my diet, but I still may have only one a week, exept I can bake with eggs without a problem. I may have a spoonful of ice cream here and there, but that's about it. It helps when I go out to eat, I can have a little real butter on a baked potato without issues. As far as gluten goes, I wouldn't even try. If I bump into something bad, or cross contamination I'm OK. So, I think the treatment may be worth a try, but my recommendation would be to still be very careful.
Nancy
Hi Nancy,
Thanks:)
Ha..that acupuncture-treatment is called PERLA, but I just red that the Dr. who's treating me, used N.A.E.T as the base for this thing. So, I guess it's pretty the same.
Allready thought something like that...guess it's pretty impossible to heal all this stuff only with acupunture. Just had the first treatment last friday (the milk-one) but didnt try to eat any dairy cause m having an active inflammation at this moment and eating that kind of stuff wont make it better, I guess. My insurence isnt paying for it..so, maybe I shouldn't go for the other allergy's if it doesn'r really cure (at the other hand..a spoonfull of ice is better then nothing;))
..Did you actually try to eat more then a little bit of dairy and egg??..and is your body reacting immediatly..(and what kind of reactions?)?
And how are you in general? Still on entocort? Or on diet only?!
Sorry for all this questions:)
Mariska
Thanks:)
Ha..that acupuncture-treatment is called PERLA, but I just red that the Dr. who's treating me, used N.A.E.T as the base for this thing. So, I guess it's pretty the same.
Allready thought something like that...guess it's pretty impossible to heal all this stuff only with acupunture. Just had the first treatment last friday (the milk-one) but didnt try to eat any dairy cause m having an active inflammation at this moment and eating that kind of stuff wont make it better, I guess. My insurence isnt paying for it..so, maybe I shouldn't go for the other allergy's if it doesn'r really cure (at the other hand..a spoonfull of ice is better then nothing;))
..Did you actually try to eat more then a little bit of dairy and egg??..and is your body reacting immediatly..(and what kind of reactions?)?
And how are you in general? Still on entocort? Or on diet only?!
Sorry for all this questions:)
Mariska
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fatbuster205
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Hi Mariska!
If I read you right, you were on Entocort for two days?? Let me put a different perspective on this! I was put on Prednisolone for (I think) 2-3 weeks last July (yes 2012!); then 9mg E until February 2013. I then weaned off and Sunday just passed was my last dose. So today (Monday) I am off steroids! Big breathe!!!!! No way can 2 days on steroids make a difference! I deliberately tested myself with gluten on Friday and 21 hours later I paid!!!! I totally respect people who want to go to a homeopath etc but make sure they are certified qualified!! Many years ago I was actually recommended to see a Homeopath - 3 pills later my symptoms had gone! Unfortunately I no longer live in the same country!!! That was before I was diagnosed! But if you are in major flare up, you need to get that inflammation under control. Personally, from now on my first port of call will be entocort! But, most importantly, take on what people here are telling you!
Take care!
Anne
If I read you right, you were on Entocort for two days?? Let me put a different perspective on this! I was put on Prednisolone for (I think) 2-3 weeks last July (yes 2012!); then 9mg E until February 2013. I then weaned off and Sunday just passed was my last dose. So today (Monday) I am off steroids! Big breathe!!!!! No way can 2 days on steroids make a difference! I deliberately tested myself with gluten on Friday and 21 hours later I paid!!!! I totally respect people who want to go to a homeopath etc but make sure they are certified qualified!! Many years ago I was actually recommended to see a Homeopath - 3 pills later my symptoms had gone! Unfortunately I no longer live in the same country!!! That was before I was diagnosed! But if you are in major flare up, you need to get that inflammation under control. Personally, from now on my first port of call will be entocort! But, most importantly, take on what people here are telling you!
Take care!
Anne
If you ever feel too insignificant to be noticed, you have never been to bed with a mosquito!
Hi Anne,
Ha..no..i've been on entocort for 10 weeks (9mg a day) and still had fever, blood, pain and all the kind of inflammation. Didnt eat any gluten en dairy that whole time. So..the internist told me to start with Prednison..taking that now for 7 days but still doenst seems to work that much (well, pain is not that bad anymore..but still blood and fever (not like the whole day..but it comes and goes)
Really good to hear you just weaned off the entocort! Can imagine that if feels great not to take that medicins all the time.. If i get you right..you took that Entocort 9mg for 6 months? And did you finally see any improvement at february?
I do totally agree with that thing you say about needing the inflammation under control. That's why I did start with the Prednison..but maybe i'd to be a little bit more patience with the entocort..it's just that I dont know whats normal...
But still...m happy to hear that you finished the entocort! Red your message about that gluten-check you did...and hope you can, by eating GF, stay off the medicines:)!!
Mariska
Ha..no..i've been on entocort for 10 weeks (9mg a day) and still had fever, blood, pain and all the kind of inflammation. Didnt eat any gluten en dairy that whole time. So..the internist told me to start with Prednison..taking that now for 7 days but still doenst seems to work that much (well, pain is not that bad anymore..but still blood and fever (not like the whole day..but it comes and goes)
Really good to hear you just weaned off the entocort! Can imagine that if feels great not to take that medicins all the time.. If i get you right..you took that Entocort 9mg for 6 months? And did you finally see any improvement at february?
I do totally agree with that thing you say about needing the inflammation under control. That's why I did start with the Prednison..but maybe i'd to be a little bit more patience with the entocort..it's just that I dont know whats normal...
But still...m happy to hear that you finished the entocort! Red your message about that gluten-check you did...and hope you can, by eating GF, stay off the medicines:)!!
Mariska
Mariska,
I was on Entocort for about 8 months. I was also prescribed Imuran. Once I started Imuran I slowly tapered off of Entocort. That was about the time I began the N.A.E.T. treatment. I have never tried eating a lot of anything that I am not suppose to eat. A little here and there. I have not had any adverse reactions since beginning the Imruan and going through the acupuncture treatments (over a year now) except for stress. That will cause several visits to the bathroom every time. For that I take a natural supplement called Diarrhea Stop.
I gave myself plenty of time to heal and was not reacting when I did go through the treatment. I can also eat salads, fruits, etc., which I did not eat for a year.
Nancy
I was on Entocort for about 8 months. I was also prescribed Imuran. Once I started Imuran I slowly tapered off of Entocort. That was about the time I began the N.A.E.T. treatment. I have never tried eating a lot of anything that I am not suppose to eat. A little here and there. I have not had any adverse reactions since beginning the Imruan and going through the acupuncture treatments (over a year now) except for stress. That will cause several visits to the bathroom every time. For that I take a natural supplement called Diarrhea Stop.
I gave myself plenty of time to heal and was not reacting when I did go through the treatment. I can also eat salads, fruits, etc., which I did not eat for a year.
Nancy