Hello everyone. I just got diagnosed with LC two weeks ago. I found the old board and read it every chance I had. I wondered where everyone went and then I found this board. Now I'm reading this one every chance I get. There are some people posting on the old board and I want to tell them about this one, but I have a feeling that's a no-no.
I feel like I know many of you already and I'm grateful that you've shared your experiences and insight. I suddenly began having D in January, saw the GI in February and have had several tests, all negative until the biopsy. I started trying the GF diet with little improvement for the first week. I'm visiting my daughter for a week and can't stay GF. The D is worse today than it's been for a while. I think I'll take an immodium for the return plane trip on Monday.
The GI recommended the Pepto-Bismol regimen and I began it with high hopes. I had a severe reaction to it (exploding D - up all night). I told his nurse and she was astonished. My GI was, too. Next he prescribed Entocort 3X a day. I tried the PB a week later just to be sure it wasn't something I ate, and had the same reaction. Has anyone else had a bad reaction to PB? Any ideas what could have caused it?
I've decided to get tested by EnteroLab and begin the Entocort. Or should I wait to see if the GF diet works first? From what I read here, that could take a while.
I'm New Here
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
I'm New Here
You never know what you can do until you have to do it.
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barbaranoela
- Emperor Penguin
- Posts: 5394
- Joined: Wed May 25, 2005 6:11 pm
- Location: New York
Hiiya Gloria----
Nice to meet U also---
I cannot take Pepto---due to the *bismuth* in it---
Anyway--when I did try it---had ZIPPO results--
And also tried the Entocort but had allergic reaction to that also--
I was diagnosed MCC---
Was treated with pred.
but had no choice---and then GI added Colazal--
Have U read all our stories??
That will give U a good idea as to what many of us went thru--
I am *controlled* now--certain ingrediants ,such as sorbitol will kill me so I have to read all labels---etc.---
The *old* room~~~~ puts a grin on my face
Good luck with your *trip* to getting better--
Barbara
Nice to meet U also---
I cannot take Pepto---due to the *bismuth* in it---
Anyway--when I did try it---had ZIPPO results--
And also tried the Entocort but had allergic reaction to that also--
I was diagnosed MCC---
Was treated with pred.
but had no choice---and then GI added Colazal--Have U read all our stories??
That will give U a good idea as to what many of us went thru--
I am *controlled* now--certain ingrediants ,such as sorbitol will kill me so I have to read all labels---etc.---
The *old* room~~~~ puts a grin on my face
Good luck with your *trip* to getting better--
Barbara
the fruit of the spirit is love, joy, peace, patience, kindness, goodness, faithfulness and self-control
Hi Gloria, and welcome aboard,
Some people have fast results with the GF diet, and some require much more time to get relief from all the symptoms. Others find that it takes even more time, to sort out additional food intolerances. Immodium seems to give good results for many of us who need some temporary "insurance" for a trip or something of that sort.
I believe several members here had adverse reactions to bismuth, and had to discontinue taking it. For that reason, Dr. Fine no longer recommends it as the first line of defense, for treating MC. He is the doctor who developed that treatment, (in conjunction with the GF diet). These days, I believe he recommends the GF diet, alone.
I'm not sure if anyone has documented the reason why certain individuals have an adverse reaction to bismuth, but it's a heavy metal, and slowly accumulates in the body during the treatment, so that treatment has to be limited to about eight weeks, anyway. Additional amounts can lead to a toxic buildup, even for individuals who tolerate it normally.
Several of us have had good results with a combination of the diet and Entocort. The Entocort gives reasonably prompt relief from most of the symptoms, and allows time for the diet to work, as the gut slowly heals. After the healing process is complete, you can slowly taper off the Entocort, and maintain remission by diet alone. Some prefer to skip the diet altogether, and eventually taper down to a maintenance dose of Entocort, and remain on that treatment, to control their symptoms. We share experiences, and everyone chooses their own preferred treatment program.
It sounds like you've done your homework, and I agree that having those tests done at Enterolab is an excellent way to begin. Once the Entocort and/or GF diet begin to work, you'll soon have your life back.
Again, welcome to our online family, and please feel free to ask any questions you might have, at any time, or about any subject.
Tex
P S Regarding the old board - let's just say that we shared a lot of experiences there, but felt that we would be happier with our own "place".
Some people have fast results with the GF diet, and some require much more time to get relief from all the symptoms. Others find that it takes even more time, to sort out additional food intolerances. Immodium seems to give good results for many of us who need some temporary "insurance" for a trip or something of that sort.
I believe several members here had adverse reactions to bismuth, and had to discontinue taking it. For that reason, Dr. Fine no longer recommends it as the first line of defense, for treating MC. He is the doctor who developed that treatment, (in conjunction with the GF diet). These days, I believe he recommends the GF diet, alone.
I'm not sure if anyone has documented the reason why certain individuals have an adverse reaction to bismuth, but it's a heavy metal, and slowly accumulates in the body during the treatment, so that treatment has to be limited to about eight weeks, anyway. Additional amounts can lead to a toxic buildup, even for individuals who tolerate it normally.
Several of us have had good results with a combination of the diet and Entocort. The Entocort gives reasonably prompt relief from most of the symptoms, and allows time for the diet to work, as the gut slowly heals. After the healing process is complete, you can slowly taper off the Entocort, and maintain remission by diet alone. Some prefer to skip the diet altogether, and eventually taper down to a maintenance dose of Entocort, and remain on that treatment, to control their symptoms. We share experiences, and everyone chooses their own preferred treatment program.
It sounds like you've done your homework, and I agree that having those tests done at Enterolab is an excellent way to begin. Once the Entocort and/or GF diet begin to work, you'll soon have your life back.
Again, welcome to our online family, and please feel free to ask any questions you might have, at any time, or about any subject.
Tex
P S Regarding the old board - let's just say that we shared a lot of experiences there, but felt that we would be happier with our own "place".
Thank you for your responses. I'm still reading and trying to absorb as much as I can. There is so much useful information on the site. I really appreciate your postings.
I've been hesitant to start the Entocort because I have osteoporosis, though I take Fosamax for it. Also, between working in a high school and visiting grandchildren, I worry about the increased susceptibility to infections. I also worry about getting shingles, though I don't know if there's an increased risk of getting them while taking Entocort. Shingles is related to Chicken Pox and that's my concern.
Has anyone noticed an increased susceptibility to getting sick while taking Entocort?
Gloria
I've been hesitant to start the Entocort because I have osteoporosis, though I take Fosamax for it. Also, between working in a high school and visiting grandchildren, I worry about the increased susceptibility to infections. I also worry about getting shingles, though I don't know if there's an increased risk of getting them while taking Entocort. Shingles is related to Chicken Pox and that's my concern.
Has anyone noticed an increased susceptibility to getting sick while taking Entocort?
Gloria
You never know what you can do until you have to do it.
Hello Gloria and 
!
So happy to see a new family member!
I am one who cannot tolerate PB. It is so weird - within 1-2 hours of taking it I get explosive diarrhea, along with nausea and vomiting. I doubt it's the active ingredient (bismuth sub-salicylate). In my case, I'll bet it's one of the inert ingredients. You see, I have intolerances to so many things that it's highly likely. I mean, just looking at that neon pink color should warn me that there might be some dye to which I might react! LOL! Not to mention the awful flavor - I probably react to that chemical too!
It took me 8 and 1/2 months of diet alone to go into remission, so yes, you are correct that it can take a long time. However, I have been in remission now for almost 5 years! Can't believe it!
As I'm sure your doc has discussed, Entocort has far fewer systemic effects than prednisone. And if you just use it short term until diet alone kicks in, you should be fine, IMHO. That's what Joanna and some others did. But be sure to ask about any studies specifically linking Entocort to communicable disease.
Good luck! Your plan for getting your health back sounds right on target to me. It was Dr. Fine's tests that started me on the road to health initially.
Love,
Polly
!So happy to see a new family member!
I am one who cannot tolerate PB. It is so weird - within 1-2 hours of taking it I get explosive diarrhea, along with nausea and vomiting. I doubt it's the active ingredient (bismuth sub-salicylate). In my case, I'll bet it's one of the inert ingredients. You see, I have intolerances to so many things that it's highly likely. I mean, just looking at that neon pink color should warn me that there might be some dye to which I might react! LOL! Not to mention the awful flavor - I probably react to that chemical too!
It took me 8 and 1/2 months of diet alone to go into remission, so yes, you are correct that it can take a long time. However, I have been in remission now for almost 5 years! Can't believe it!
As I'm sure your doc has discussed, Entocort has far fewer systemic effects than prednisone. And if you just use it short term until diet alone kicks in, you should be fine, IMHO. That's what Joanna and some others did. But be sure to ask about any studies specifically linking Entocort to communicable disease.
Good luck! Your plan for getting your health back sounds right on target to me. It was Dr. Fine's tests that started me on the road to health initially.
Love,
Polly
Blessed are they who can laugh at themselves, for they shall never cease to be amused.
JJ
I would get tested as soon as possible because the longer you are GF the less antibodies there are to detect. The amount of antibodies probably wont go down that much in the 2 weeks you have been GF but since you are eating gluten now then I should suspect that you take it soon.
How do you guys get your GI to perscripe entocort as a maintenance dose? i wish I could have done that at first- and even now I would not mind trying one entocort a day for a while until I get my test results back to see if I am having an IgE or IgA reactions to certain 96 foods. I hope that test provides some insight on what else might be causing me troubles.
Keep asking questions and more questions as we are all here to help youi. I am personally on a gluten and dairy free diet which is helping but not quite getting me over the very crest of the long, steep, slick hump. Sometimes I feel as if I can see over the hump but teh hump grows bigger or I am up to my knees in pooooo and cant do a thing about it.
You will probably feel helpless as some point and that is where you really need to talk to us and let us know what is going on. Most of us have been exactly where you are and we can all share what helped up so you can try variations of these suggestions. And remember when one thing fails there is another opportunity to try something else that might bring you even greater relief.
Good luck
How do you guys get your GI to perscripe entocort as a maintenance dose? i wish I could have done that at first- and even now I would not mind trying one entocort a day for a while until I get my test results back to see if I am having an IgE or IgA reactions to certain 96 foods. I hope that test provides some insight on what else might be causing me troubles.
Keep asking questions and more questions as we are all here to help youi. I am personally on a gluten and dairy free diet which is helping but not quite getting me over the very crest of the long, steep, slick hump. Sometimes I feel as if I can see over the hump but teh hump grows bigger or I am up to my knees in pooooo and cant do a thing about it.
You will probably feel helpless as some point and that is where you really need to talk to us and let us know what is going on. Most of us have been exactly where you are and we can all share what helped up so you can try variations of these suggestions. And remember when one thing fails there is another opportunity to try something else that might bring you even greater relief.
Good luck
Dr Fine test shows positive for gluten and casien but negative for soy, eggs, and yeast
Maybe its UC maybe its MC? Who knows at this point, but at least I know my intollerances now... so heres to the road to healing!
Maybe its UC maybe its MC? Who knows at this point, but at least I know my intollerances now... so heres to the road to healing!
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Tessa
- Rockhopper Penguin
- Posts: 774
- Joined: Thu May 26, 2005 2:49 pm
- Location: Málaga, Spain (Costa del Sol)
- Contact:
Hello Gloria 
and welcome to this board, a close-together family living miles away. 
I am glad you found us and I am sure that you will be able to get what you are looking for.
It is so different when you can share your own experiences, learn from other´s and feel that you have friends all over the world. It helps a lot.
Cannot help you regarding Bismuth, but others have given you already a really good descriptions and information.
Keep on visiting and posting.
Again, welcome "onboard"
Take care,
Love,
Tessa
and welcome to this board, a close-together family living miles away. I am glad you found us and I am sure that you will be able to get what you are looking for.
It is so different when you can share your own experiences, learn from other´s and feel that you have friends all over the world. It helps a lot.
Cannot help you regarding Bismuth, but others have given you already a really good descriptions and information.
Keep on visiting and posting.
Again, welcome "onboard"
Take care,
Love,
Tessa
DX Secondary Adrenal Insufficiency= Panhypopituitarism,POTS & MC. Anaphylactic reaction to foods & some drugs.
Gluten & Dairy free diet+hydrocortisone, Florinef, Sea Salt, Vit B Complex, Potassium, Sodium, Magnesium...
Gluten & Dairy free diet+hydrocortisone, Florinef, Sea Salt, Vit B Complex, Potassium, Sodium, Magnesium...
.
Hi Gloria & Welcome!
I have been on Entocort since 2005 and have never had problems with catching infections, cold, etc.. from anybody. Actually, I can't remember how long it's been since the last time that I was ill.
Shingles, I highly doubt that taking the Entocort would make you more prone to them.
I use Miacalcin Nasal Spray for osteo and have a bone desity test every 2 years.
There are others here on the Entocort so hopefully they'll come along and answer some of your concerns too.
Dee~~~~~
I have been on Entocort since 2005 and have never had problems with catching infections, cold, etc.. from anybody. Actually, I can't remember how long it's been since the last time that I was ill.
Shingles, I highly doubt that taking the Entocort would make you more prone to them.
I use Miacalcin Nasal Spray for osteo and have a bone desity test every 2 years.
There are others here on the Entocort so hopefully they'll come along and answer some of your concerns too.
Dee~~~~~
Our return 3 hr flight turned into 7 hr. because of storms at O'Hare. We sat on the tarmac for 3 1/2 hr w/o any air conditioning. I had a window seat - big mistake! Luckily I had more Immodium with me.
I signed up for the Enterolab tests today. I didn't start the Entocort this morning because I wasn't feeling very good and didn't want to upset my system any more. I'm procrastinating, I know.
I baked some chocolate chip cookies tonight using brown rice and potato flour. They were pretty yummy and made me feel like there's hope. If I'm intolerant to chocolate, I'll be very depressed.
I have 55 tomato plants in my yard for canning my own tomatoes. I have had bouts with diverticulitis and it's impossible to find canned tomatoes w/o seeds. If I'm intolerant to them, you can stop by and take what you want!
Peggy - My Dr. recommended Entocort and I only had to pay $20 copay for the first month. I've seen that others have used Asacol, but haven't researched it. If I have a problem with Entocort, I'll look into Asacol. I'm not sure what the difference is between them, but I probably should get educated.
I signed up for the Enterolab tests today. I didn't start the Entocort this morning because I wasn't feeling very good and didn't want to upset my system any more. I'm procrastinating, I know.
I baked some chocolate chip cookies tonight using brown rice and potato flour. They were pretty yummy and made me feel like there's hope. If I'm intolerant to chocolate, I'll be very depressed.
I have 55 tomato plants in my yard for canning my own tomatoes. I have had bouts with diverticulitis and it's impossible to find canned tomatoes w/o seeds. If I'm intolerant to them, you can stop by and take what you want!
Peggy - My Dr. recommended Entocort and I only had to pay $20 copay for the first month. I've seen that others have used Asacol, but haven't researched it. If I have a problem with Entocort, I'll look into Asacol. I'm not sure what the difference is between them, but I probably should get educated.
You never know what you can do until you have to do it.
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harvest_table
- Rockhopper Penguin
- Posts: 1509
- Joined: Wed May 25, 2005 6:29 pm
- Location: Fergus Falls, Minnesota
Thanks Gloria, that's a very tempting and generous offer.Gloria wrote: I have 55 tomato plants in my yard for canning my own tomatoes. I have had bouts with diverticulitis and it's impossible to find canned tomatoes w/o seeds. If I'm intolerant to them, you can stop by and take what you want!
Glad you found us, hang in there and read lots on this forum.
Love,
Joanna
THE GLUTEN FILES
http://jccglutenfree.googlepages.com/
http://jccglutenfree.googlepages.com/
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harvest_table
- Rockhopper Penguin
- Posts: 1509
- Joined: Wed May 25, 2005 6:29 pm
- Location: Fergus Falls, Minnesota
Polly,Polly wrote: As I'm sure your doc has discussed, Entocort has far fewer systemic effects than prednisone. And if you just use it short term until diet alone kicks in, you should be fine, IMHO. That's what Joanna and some others did. But be sure to ask about any studies specifically linking Entocort to communicable disease.
If you can elaborate on Entocort usage linking to communicable disease that would be appreciated. It's news to me.
Joanna
THE GLUTEN FILES
http://jccglutenfree.googlepages.com/
http://jccglutenfree.googlepages.com/