I'm a newby that has viewed this forum for several years, but was shy about this topic, so haven't registered until now, but have learned so much just by reading all your post, so thought I should finally jump in. I have had this problem for a long, long time, was treated for IBD for several years without much sucess until November 2004 the D got so bad and I had just trained myself to go without eating until the evening so I would be at home for the night & close to the bathroom, then would be up several times during the night. My Electrolytes got so low had to be hospitalized and treated immediately, this wonderful doctor that treated me discovered that I have M/C / LC prescribed Asacol 3X daily and Pepto-Bismol 2 Tablets 3X daily. I started getting better right away and went into remission with the meds and controlling my diet pretty well, doesn't take long to learn what you can't eat. Stayed in remission for about 2 years until I decided not to take the meds anymore and it all came back with a vengeance and had to start treatment again and occasionally had to go to hospital to get rehydrated, but am in semi-remission now, and just wanted you all to know that you have helped me tremendously with your post. I will be posting again real soon because still have lots of questions and know you can help me. Thanks again!!!
Love, Judy
Newby
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi Judy,
It's a pleasure to finally be able to welcome you to our internet family, (though, of course, I wish that you didn't need this type of information).
Almost all of us tend to hope that we are "cured", once we reach remission, (since that is what most of the early information available about this disease claimed, but unfortunately, most of us are not that lucky. We have to continue our treatment indefinitely, if we are to stay free of symptoms.
I'm glad that you've been able to benefit from some of the information here over the past few years, and I hope that we can help you to get back to full remission, again, and soon. Again, welcome aboard, and please feel free to ask anything.
Love,
Tex (Wayne)
It's a pleasure to finally be able to welcome you to our internet family, (though, of course, I wish that you didn't need this type of information).
Almost all of us tend to hope that we are "cured", once we reach remission, (since that is what most of the early information available about this disease claimed, but unfortunately, most of us are not that lucky. We have to continue our treatment indefinitely, if we are to stay free of symptoms.
I'm glad that you've been able to benefit from some of the information here over the past few years, and I hope that we can help you to get back to full remission, again, and soon. Again, welcome aboard, and please feel free to ask anything.
Love,
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.
-
Joefnh
- Rockhopper Penguin
- Posts: 2478
- Joined: Wed Apr 21, 2010 8:25 pm
- Location: Southern New Hampshire
Hi Judy, first Welcome to the group...
There really is nothing to be embarrassed about here, as pretty much everyone here is in the same boat and deals with the same subject... hence the title of the group "The Potty People"
It sounds like you are well on your way with the meds and addressing the diet. What type of food sensitivities have you noted?
Alternating between flares and remission is a normal course for most of us and it is great to have a caring family of people who fully understand what you are going through. As you have probably noted we talk openly here about this topic and all input is welcomed.
Again Judy welcome to the group
--Joe
There really is nothing to be embarrassed about here, as pretty much everyone here is in the same boat and deals with the same subject... hence the title of the group "The Potty People"
It sounds like you are well on your way with the meds and addressing the diet. What type of food sensitivities have you noted?
Alternating between flares and remission is a normal course for most of us and it is great to have a caring family of people who fully understand what you are going through. As you have probably noted we talk openly here about this topic and all input is welcomed.
Again Judy welcome to the group
--Joe
Joe
-
MBombardier
- Rockhopper Penguin
- Posts: 1523
- Joined: Thu Oct 14, 2010 10:44 am
- Location: Vancouver, WA
Welcome, Judy!
I was diagnosed with CC in September, so I am brand-new to this whole thing. I am like you--I have learned so much from this forum that I am probably years down the road in education and practice than I would be if I had tried to figure the whole thing out by myself.
Looking forward to hearing more from you!
I was diagnosed with CC in September, so I am brand-new to this whole thing. I am like you--I have learned so much from this forum that I am probably years down the road in education and practice than I would be if I had tried to figure the whole thing out by myself.
Looking forward to hearing more from you!
Marliss Bombardier
Dum spiro, spero -- While I breathe, I hope
Psoriasis - the dark ages
Hashimoto's Thyroiditis - Dec 2001
Collagenous Colitis - Sept 2010
Granuloma Annulare - June 2011
Dum spiro, spero -- While I breathe, I hope
Psoriasis - the dark ages
Hashimoto's Thyroiditis - Dec 2001
Collagenous Colitis - Sept 2010
Granuloma Annulare - June 2011
Hi Judy and Welcome,
It will be fun to discuss our potty habits with you now that you have "come out of the closet", so to speak. As Joe says, anything goes and there is really nothing to be ashamed of. In order to get the most benefit from this board, I have learned, that you must be as factual and as frank as possible. It is so refreshing to have this family to rely on.
Regards,
Rich
It will be fun to discuss our potty habits with you now that you have "come out of the closet", so to speak. As Joe says, anything goes and there is really nothing to be ashamed of. In order to get the most benefit from this board, I have learned, that you must be as factual and as frank as possible. It is so refreshing to have this family to rely on.
Regards,
Rich
"It's not what I believe. It's what I can prove." - A Few Good Men
-
MaggieRedwings
- King Penguin
- Posts: 3865
- Joined: Tue May 31, 2005 3:16 am
- Location: SE Pennsylvania
Judy,Finally nice to meet you after you have been in the shadows for so long. Also happy to hear that you have attained semi remission after such a long haul. Looking forward to your future posts and so happy this board was helpful.
Again, Welcome to the Family!
Maggie
Maggie Scarpone
___________________
Resident Birder - I live to bird and enjoy life!
___________________
Resident Birder - I live to bird and enjoy life!
Thanks & Questions
Good Morning,
Just want to say a big Thank You for the welcome, you are all so kind and it's so nice to be able to talk to people with the same problem that understands all the issues with this disease. All of you have already been so helpful without knowing it because I was just reading, but is so nice to be able to ask questions. I do know that this disease is not curable, but hope I can keep it in remission, but I have flares fairly frequently. One thing I would like to know, does anyone on here have extreme nausea and throwing-up when you have the bouts with the diarrhea, for the last 6 years, since I was hospitalized with this condition, I have the nausea and vomiting. It is so bad that I have to heave so hard that it makes my rib cage really sore the next day and these bouts almost always happen at night. Some of the worst intolerant foods that I've found just through trial & error are: Raw vegetables, dairy products, anything whipped, real spicey foods, but it is strange I think, that I seem to be able to eat pizza with no problem, which I am really grateful because I really like Pizza. When this disease was diagnosed, the GI also discovered that I have Internal Hemorrhoids, which is really bothersome and I absolutely cannot eat beef for that purpose, they get so bad they bleed a couple days after eating beef of any kind, and this is my favorite meat, but have substituted a lot of chicken in its place. The way I see it, is that it could be a lot worse, at least I can eat the things that I can tolerate, I feel that if you look around, you can always see someone that has a worst condition than I do. This message is getting a little long so will have a lot more questions later. Again Thanks for being so helpful, and btw, I have a wonderful husband that is so understanding and helpful with this disease. Don't know what I would do without him, on Dec. 6th we will be married for 52 years.
Thanks, Judy
Just want to say a big Thank You for the welcome, you are all so kind and it's so nice to be able to talk to people with the same problem that understands all the issues with this disease. All of you have already been so helpful without knowing it because I was just reading, but is so nice to be able to ask questions. I do know that this disease is not curable, but hope I can keep it in remission, but I have flares fairly frequently. One thing I would like to know, does anyone on here have extreme nausea and throwing-up when you have the bouts with the diarrhea, for the last 6 years, since I was hospitalized with this condition, I have the nausea and vomiting. It is so bad that I have to heave so hard that it makes my rib cage really sore the next day and these bouts almost always happen at night. Some of the worst intolerant foods that I've found just through trial & error are: Raw vegetables, dairy products, anything whipped, real spicey foods, but it is strange I think, that I seem to be able to eat pizza with no problem, which I am really grateful because I really like Pizza. When this disease was diagnosed, the GI also discovered that I have Internal Hemorrhoids, which is really bothersome and I absolutely cannot eat beef for that purpose, they get so bad they bleed a couple days after eating beef of any kind, and this is my favorite meat, but have substituted a lot of chicken in its place. The way I see it, is that it could be a lot worse, at least I can eat the things that I can tolerate, I feel that if you look around, you can always see someone that has a worst condition than I do. This message is getting a little long so will have a lot more questions later. Again Thanks for being so helpful, and btw, I have a wonderful husband that is so understanding and helpful with this disease. Don't know what I would do without him, on Dec. 6th we will be married for 52 years.
Thanks, Judy
Good Morning Judy,
I'm not sure how many of us have nausea as part of our reactions, but I would guess that around 20 to 30%, (at most), have nausea and/or vomiting. It was a frequent problem for me, and vomiting was a major concern, because it often resulted in an "accident". Fortunately, my nausea didn't always involve vomiting.
Most of us have to avoid gluten, dairy products, raw fruits and vegetables, (except bananas), and spicy foods, and about half of us have to avoid soy. A few of us have to avoid eggs, yeast, and various other foods. Before I reached remission, I reacted to beef, also, (it caused bloating, aches and pains, and a headache), but now I can eat it without any problems. I don't eat it very often, though, the meat I eat the most of is pork.
The following comments in this post explain why I am convinced that you are gluten-sensitive, even though you don't feel that you are:
Many of us find that as long as we continue to eat gluten regularly, we don't seem to have a problem with it - instead, everything else seems to make us sick. Gluten has a very insidious effect on most of us, in that it can make us crave it, while convincing us that it's not causing any problems. We even have a few members who had concluded, after years of experimentation, that gluten actually resolved their D, and it was the "safest" food for them. Eventually, though, they discovered that completely eliminating it from their diet, put an end to their remaining symptoms, and prevented the frequent "relapses". Gluten antibodies have a very long half-life, which means that they don't necessarily affect some of us immediately, instead they create a long-term inflammatory condition which makes our gut hypersensitive to all sorts of other foods. We find that if we totally eliminate gluten from our diet, then eventually, (it often takes 6 months to a year, to get the full effect), we will stop having those "mysterious" relapses. IOW, we will be able to maintain a state of stable remission. Eliminating gluten from our diet allows our gut to heal, so that we can eat most of those fruits and vegetables again, even raw, without any problems.
Only one of our members, (not counting yourself), has tested positive to dairy-sensitivity, while testing negative to gluten sensitivity, and her own experience suggests that she is gluten sensitive, so she is currently being tested for IgA deficiency, (since IgA deficiency will cause false negative results on these tests). Everyone else, who is sensitive to dairy products, is also sensitive to gluten. A stool test sample, sent to Enterolab, in Dallas, will provide a definitive answer to this question.
Congratulations on your upcoming 52 year anniversary.
Tex
I'm not sure how many of us have nausea as part of our reactions, but I would guess that around 20 to 30%, (at most), have nausea and/or vomiting. It was a frequent problem for me, and vomiting was a major concern, because it often resulted in an "accident". Fortunately, my nausea didn't always involve vomiting.
Most of us have to avoid gluten, dairy products, raw fruits and vegetables, (except bananas), and spicy foods, and about half of us have to avoid soy. A few of us have to avoid eggs, yeast, and various other foods. Before I reached remission, I reacted to beef, also, (it caused bloating, aches and pains, and a headache), but now I can eat it without any problems. I don't eat it very often, though, the meat I eat the most of is pork.
The following comments in this post explain why I am convinced that you are gluten-sensitive, even though you don't feel that you are:
Many of us find that as long as we continue to eat gluten regularly, we don't seem to have a problem with it - instead, everything else seems to make us sick. Gluten has a very insidious effect on most of us, in that it can make us crave it, while convincing us that it's not causing any problems. We even have a few members who had concluded, after years of experimentation, that gluten actually resolved their D, and it was the "safest" food for them. Eventually, though, they discovered that completely eliminating it from their diet, put an end to their remaining symptoms, and prevented the frequent "relapses". Gluten antibodies have a very long half-life, which means that they don't necessarily affect some of us immediately, instead they create a long-term inflammatory condition which makes our gut hypersensitive to all sorts of other foods. We find that if we totally eliminate gluten from our diet, then eventually, (it often takes 6 months to a year, to get the full effect), we will stop having those "mysterious" relapses. IOW, we will be able to maintain a state of stable remission. Eliminating gluten from our diet allows our gut to heal, so that we can eat most of those fruits and vegetables again, even raw, without any problems.
Only one of our members, (not counting yourself), has tested positive to dairy-sensitivity, while testing negative to gluten sensitivity, and her own experience suggests that she is gluten sensitive, so she is currently being tested for IgA deficiency, (since IgA deficiency will cause false negative results on these tests). Everyone else, who is sensitive to dairy products, is also sensitive to gluten. A stool test sample, sent to Enterolab, in Dallas, will provide a definitive answer to this question.
Congratulations on your upcoming 52 year anniversary.
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.
Welcome, Judy!! 
I've never had nausea or vomiting - I'm grateful for that. I agree with Tex that you likely need to eliminate gluten. I never noticed a problem with gluten, but I decided the odds were that I was gluten-intolerant as soon as I found this board. Later, testing from Enterolab confirmed that I was. It sounds difficult to eliminate, but there are many substitutes available. You might try looking at Dee's Kitchen to see how delicious recipes can be without gluten.
Gloria
I've never had nausea or vomiting - I'm grateful for that. I agree with Tex that you likely need to eliminate gluten. I never noticed a problem with gluten, but I decided the odds were that I was gluten-intolerant as soon as I found this board. Later, testing from Enterolab confirmed that I was. It sounds difficult to eliminate, but there are many substitutes available. You might try looking at Dee's Kitchen to see how delicious recipes can be without gluten.
Gloria
You never know what you can do until you have to do it.
Also welcome Judy Had nausea everyday all day for the first year, until I found this website and gave up gluten and dairy. It was such an improvement! Still fighting the battles but am very glad to have this website to bond with and learn from. Ask your questions, because we can all learn from each one's experience.
Wow what a wonderful milestone...........52 years!
Wishing you a perfect day!! Ginny
Had nausea everyday all day for the first year, until I found this website and gave up gluten and dairy. It was such an improvement! Still fighting the battles but am very glad to have this website to bond with and learn from. Ask your questions, because we can all learn from each one's experience.Wow what a wonderful milestone...........52 years!
Wishing you a perfect day!! GinnyGod, grant me the serenity to accept the things I cannot change; courage to change those things I can, and WISDOM to know the difference
Hi
Hello everyone,
Sorry I've been out a few days, but have really enjoyed your response to my questions about this awful disease. I do think that I am a little gluten intolerant, if there is such a thing as a little intolerant lol. I did have the test 6 years ago when I was in the hospital, when my electrolytes got so low, but it came back negative, but like I've read on here before, I also think that the test doesn't really prove anything, I don't seem to always react to gluten, but if I eat pancakes and other gluten products like a couple days then I have a pretty violent reaction to it. I just haven't given up yet to go on the gluten free diet, I do so love breads of all kinds. When I was tested, the doctor thought for sure that I was intolerant enough he sent the dietician to my hospital room to discuss the diet with me, but when the test came back negative, it was just kinda dismissed, so I just haven't given up yet, I only have trouble if I eat too much gluten so just limit the amount and seem to be working ok.
My GI doctor also thinks I may have Fibromyalgia, he says sometimes it kind of goes along with the M/C. I have quiet a bit of pain especially in my feet and legs, and severe muscle cramps, and nothing seems to make them go away but a heating pad, and I sleep with it under my pillow so if they get to cramping really bad I can turn it on, because they cramp so bad that its hard to get up and get it. The cramping is so bad that it is almost unbearable. Does anyone else on here have muscle cramps? Sometimes the Fibro pain in my feet feels like something sharp being drilled into a spot on the top of my foot. I would like to learn if anyone else has this kind of pain, and how you treat it if you do.
I am so full of questions, but guess this is enough for right now, I have so many ailments, that I'm almost embarrassed to mention them all. I am a 68 year old, old lady, and seems like my golden years are not so golden rigtht now, but I'm working on it, sometimes it just gets so depressing, since I've always been pretty active and able to do about anything that I wanted to, and six years ago that all changed.
Again, Thanks for all the help, Judy
Sorry I've been out a few days, but have really enjoyed your response to my questions about this awful disease. I do think that I am a little gluten intolerant, if there is such a thing as a little intolerant lol. I did have the test 6 years ago when I was in the hospital, when my electrolytes got so low, but it came back negative, but like I've read on here before, I also think that the test doesn't really prove anything, I don't seem to always react to gluten, but if I eat pancakes and other gluten products like a couple days then I have a pretty violent reaction to it. I just haven't given up yet to go on the gluten free diet, I do so love breads of all kinds. When I was tested, the doctor thought for sure that I was intolerant enough he sent the dietician to my hospital room to discuss the diet with me, but when the test came back negative, it was just kinda dismissed, so I just haven't given up yet, I only have trouble if I eat too much gluten so just limit the amount and seem to be working ok.
My GI doctor also thinks I may have Fibromyalgia, he says sometimes it kind of goes along with the M/C. I have quiet a bit of pain especially in my feet and legs, and severe muscle cramps, and nothing seems to make them go away but a heating pad, and I sleep with it under my pillow so if they get to cramping really bad I can turn it on, because they cramp so bad that its hard to get up and get it. The cramping is so bad that it is almost unbearable. Does anyone else on here have muscle cramps? Sometimes the Fibro pain in my feet feels like something sharp being drilled into a spot on the top of my foot. I would like to learn if anyone else has this kind of pain, and how you treat it if you do.
I am so full of questions, but guess this is enough for right now, I have so many ailments, that I'm almost embarrassed to mention them all. I am a 68 year old, old lady, and seems like my golden years are not so golden rigtht now, but I'm working on it, sometimes it just gets so depressing, since I've always been pretty active and able to do about anything that I wanted to, and six years ago that all changed.
Again, Thanks for all the help, Judy
Judy, I've had problems with muscle cramps at night for at least 10 years. I'm 64 years old. Between waking up about 3 times every night with hot flashes, the added foot and leg cramps several times a night as well really meant a lot of interruptions to my sleep. I just would feel so tired during the day. But I will say they really seem to have reduced a lot in the past year since I went gluten/dairy/soy free. I would say that probably 5 out of 7 nights I don't have any leg cramps. And when I do, they are a pale reflection of the ones I used to have. I also had a "hot spot" on my calf, for quite a few years that might be fibromyalgia, but I never have explored that. The hot spot has also gone away. So I can't help but wonder from what you've posted if going totally gluten free might help.
As far as other things that seem to help, we are all different, but for what it's worth.......Taking a 30-40 minute walk during the day makes a difference now. I find that if I don't do that, I will sometimes get a mild leg or foot cramp, but nothing like what I had before. I also use one of those microwave flax bags at the foot of my bed on cold nights to warm my feet, as I've found that cold air on my feet and legs can be a trigger. And then there is an old folk remedy that sometimes helps, and that is to pinch your upper lip under your nose sideways. Don't ask me why it works, but sometimes it does.
I really feel for you because I know how depressing those leg cramps can be. I used to dread going to bed.....
Take care,
Rosie
As far as other things that seem to help, we are all different, but for what it's worth.......Taking a 30-40 minute walk during the day makes a difference now. I find that if I don't do that, I will sometimes get a mild leg or foot cramp, but nothing like what I had before. I also use one of those microwave flax bags at the foot of my bed on cold nights to warm my feet, as I've found that cold air on my feet and legs can be a trigger. And then there is an old folk remedy that sometimes helps, and that is to pinch your upper lip under your nose sideways. Don't ask me why it works, but sometimes it does.
I really feel for you because I know how depressing those leg cramps can be. I used to dread going to bed.....
Take care,
Rosie
Our greatest weakness lies in giving up. The most certain way to succeed is always to try just one more time………Thomas Edison