Susan,
When I first found this forum 4 years ago(almost to this day). I would read what everyone was telling me about diet and lifestyle changes and I was shocked!! I couldn't believe most of what I was reading and got kind of angry( part of the grieving process). Yes this is a loss just as your loss of your mother. So much of American activities revolve around food I did not know how I was going to be able to lead a normal life let alone be able to continue my active lifestyle. It was a huge adjustment. Our friends quit inviting us over for dinner as they were afraid of my new dietary restrictions. More grieving!!
Now I look back and it is not so bad. We have to make adjustments when we travel because eating out is difficult. You will learn, I hope you can figure out your food intolerances soon so you symptoms can be lessened. I have a great husband who has also decided to be mostly gluten free and our household is gluten free. He discovered he felt better without gluten. I have a 24 yr. old son who is a professional cyclist(for team Clif Bar), he has also discovered that consuming gluten effects his performance and he has become quite the GF gourmet. Funny thing my best friends who were afraid to have us over years ago have discovered that they are allergic to wheat and now they are GF.
Don't feel overwhelmed at this point it will only cause more stress which could make your symptoms worse. It will all come in time and you will adjust. I have been able to maintain my active lifestyle and ride 1-2 century bike rides a year and train 60-80 miles a week and do yoga. Keep your chin up, you just have to keep your eyes open learn as much as you can!!
Hi! I am Susan from Chattanooga, TN, and I am NEW HERE!
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Wow Susan, you sure do have a lot going on! My MC symptoms absolutely respond to stress. Sometimes just thinking about a stressful to-do list can send me to the bathroom with D. I had to euthanize my cat last week, and the grief caused non- stop D for 2 days.
I too suffered from frequent UTIs when I was younger, about 4 per year. I usually took Macrobid, Monurol, or bactrim. I haven't had a UTI for many years since I discovered D-mannose. I keep a jar of the powder at home and add some to juice at the first twinge of UTI pain. The next day I'm all better. I even use it for my 5 yr old daughter who had 2 UTIs when she was younger. She tells me it hurts when she pees, she drinks d-mannose before bed, and voila, nothing develops. I even sent jars to my mom in Guatemala who had a nagging UTI.
I too suffered from frequent UTIs when I was younger, about 4 per year. I usually took Macrobid, Monurol, or bactrim. I haven't had a UTI for many years since I discovered D-mannose. I keep a jar of the powder at home and add some to juice at the first twinge of UTI pain. The next day I'm all better. I even use it for my 5 yr old daughter who had 2 UTIs when she was younger. She tells me it hurts when she pees, she drinks d-mannose before bed, and voila, nothing develops. I even sent jars to my mom in Guatemala who had a nagging UTI.
Hey Susan, I know how you feel . I went through about a month of denial ( I wish I had a copy of my first posts a year ago). When my D started, I treated it by eating crackers and noodles... and things settled down a bit because I took all the fiber out of my diet ( salad mostly). So I thought there is no way I could be gluten intolerant. But when D persisted and I got the Dx of MC, I made the decision to take control. I figured I could take it all out of my diet, see how it goes and then add things back in. I am not saying it's easy. It's not, but it's so worth it in the end. I truly feel like I will never be as bad as I was at the beginning because I have all this knowledge now. Now when I "soyed" or "glutened", the worst that happens is my BM will be loose the next morning. Pretty good :)
Just so you know, there are some people who have MC and go back and forth between D and C. We all react a little different. It sounds like your symptoms are more mild than some of us. That's good- Maybe you have caught it early and don't have too much damage yet in your intestines. So if you take care of your diet you could reach remission fairly soon!
Okay, going to make a batch of vegetable beef soup now
Take Care
Leah
Just so you know, there are some people who have MC and go back and forth between D and C. We all react a little different. It sounds like your symptoms are more mild than some of us. That's good- Maybe you have caught it early and don't have too much damage yet in your intestines. So if you take care of your diet you could reach remission fairly soon!
Okay, going to make a batch of vegetable beef soup now
Take Care
Leah
Susan, I was in denial too, eating pasta, toast, etc. at first. I thought I would give going gluten free a trial run after finding this site, and figured I would go back to eating it after a couple weeks if I didn't feel better. Also did away with dairy. Well, at the end of two weeks I was feeling so good I didn't want to go back if the D would start again. Then my Enterolab analysis showed I was intolerant. I have been without for six weeks now, and don't miss it as much as I thought. The one difficult thing now is cooking so much. I always make sure I have home made almond flour crackers and muffins on hand, also homemade chicken soup, and a supply of softly cooked vegetables.
I know it's tough adjusting, but I know you will find your way! Hope your road gets a little smoother soon.
Jean
I know it's tough adjusting, but I know you will find your way! Hope your road gets a little smoother soon.
Jean
Hello, Friends!
Okay, here is what is happening with me as of yesterday. I know I am in denial, and I SO appreciate every one of you understanding this is a normal reaction and I am grateful to all of you for having patience with me.
I called my GI doc yesterday morning, and they called me right back and had me come in to her office. I told her of all of my worries about the gluten, lactose, and she told me they would use the stool they already had from me from my recently colonoscopy, and then she typed into her little computer, and voila! The tests for gluten and lactose tests for allergies to these foods has now been ordered.
She took me off of the Pepto and prescribed me Questran packets, which you sprinkle on applesauce.
I do have a couple of questions. So, here goes:
If any of you "slip up" and eat gluten (or whatever you can't eat), how long after you eat this do you begin to have problems?
I have basically NOT changed my diet...other than gluten-free pretzels, and I've seen no difference in my diarrhea. In fact, I'll go several days with NO diarrhea, but still have not had a normal BM yet...although some have been close. Is this a good thing?
I went to my son's baseball game (a double-header) yesterday in the freezing cold, and I have to admit that I ate a hamburger AND a hot dog. I was so hungry that it was the BEST hamburger I've ever had, even though it was from a concession stand.
I have had NO problems at all since eating that approximately 19 hours ago.
Again, thanks for your patience and for allowing me to be in denial. Please pray that the allergy tests are negative.
All the best to my new friends,
Susan
I called my GI doc yesterday morning, and they called me right back and had me come in to her office. I told her of all of my worries about the gluten, lactose, and she told me they would use the stool they already had from me from my recently colonoscopy, and then she typed into her little computer, and voila! The tests for gluten and lactose tests for allergies to these foods has now been ordered.
She took me off of the Pepto and prescribed me Questran packets, which you sprinkle on applesauce.
I do have a couple of questions. So, here goes:
If any of you "slip up" and eat gluten (or whatever you can't eat), how long after you eat this do you begin to have problems?
I have basically NOT changed my diet...other than gluten-free pretzels, and I've seen no difference in my diarrhea. In fact, I'll go several days with NO diarrhea, but still have not had a normal BM yet...although some have been close. Is this a good thing?
I went to my son's baseball game (a double-header) yesterday in the freezing cold, and I have to admit that I ate a hamburger AND a hot dog. I was so hungry that it was the BEST hamburger I've ever had, even though it was from a concession stand.
I have had NO problems at all since eating that approximately 19 hours ago.
Again, thanks for your patience and for allowing me to be in denial. Please pray that the allergy tests are negative.
All the best to my new friends,
Susan
Susan P
By the Way...
Friends,
By the way...I've been pondering where they keep stool samples taken a while ago...at the furniture store?
Susan
By the way...I've been pondering where they keep stool samples taken a while ago...at the furniture store?
Susan
Susan P
Hopefully, the freezer. :) Do you know whether they are testing IgA levels or IgE levels? An "allergy"isn't the same as a food intolerance. Makes a big difference. I will hope for the best for you.
When you say you haven't had D for several days, but have not had a normal bm, what does that mean... that you just aren't going at all for days? Some people here go back and forth between D and C ( constipation), so......
Wow, you had a hamburger and a hot dog and felt fine?! When I was at my worst, that would not have been good for me. When it comes to reaction times, it varies from person to person and depends on the food. With me, dairy will react within 2 hours. Gluten is a tricky one. I don't think I am super sensitive because I can take a fair amount of cross contamination and not react. Gluten antibodies can stay in your system for months and so the reaction can be cumulative and take a while. Coffee hurts my gut almost right away.... as does acid foods like lime. It just depends and you have to be really aware of how your body is reacting when it does. D isn't the only indicator of a reaction. Pain, cramps, GAS, headache, fatigue.....etc.
Let us know how it goes.
Leah
When you say you haven't had D for several days, but have not had a normal bm, what does that mean... that you just aren't going at all for days? Some people here go back and forth between D and C ( constipation), so......
Wow, you had a hamburger and a hot dog and felt fine?! When I was at my worst, that would not have been good for me. When it comes to reaction times, it varies from person to person and depends on the food. With me, dairy will react within 2 hours. Gluten is a tricky one. I don't think I am super sensitive because I can take a fair amount of cross contamination and not react. Gluten antibodies can stay in your system for months and so the reaction can be cumulative and take a while. Coffee hurts my gut almost right away.... as does acid foods like lime. It just depends and you have to be really aware of how your body is reacting when it does. D isn't the only indicator of a reaction. Pain, cramps, GAS, headache, fatigue.....etc.
Let us know how it goes.
Leah
Thanks, Leah
Hiya,
No, I'm not sure what test she ran, but she didn't seem to be concerned that I would have to worry about any of this. She indicated that once I got back on track, that I should be fine. I told her about my food concerns, and that's when she ordered the stool testing. I don't know which one she ordered.
I have still had no reaction to that delicious hamburger and hotdog from that ball field concession stand at all. No stomach pain or gas, but I haven't had a BM today, either. I don't feel the need at all to go...maybe because I didn't eat hardly anything the two days prior to the burger and hotdog.
I also had Honey Nut Cheerios with real milk yesterday and this morning. I am drinking sweet tea right now, and I had two normal beers last night.
I did mix the Questran 4-gram pack with some applesauce around lunchtime today. I am supposed to do that daily, but discontinue the Pepto.
So, I am praying that it will all be okay...although through my education on these boards, I am doubting it will be. So, until then, I will eat until I'm told not to eat whatever.
By the way, I was kidding about the furniture store storing stools, but I guess you got that. It just struck me as funny. :)
Thanks so very, very much!
Susan
No, I'm not sure what test she ran, but she didn't seem to be concerned that I would have to worry about any of this. She indicated that once I got back on track, that I should be fine. I told her about my food concerns, and that's when she ordered the stool testing. I don't know which one she ordered.
I have still had no reaction to that delicious hamburger and hotdog from that ball field concession stand at all. No stomach pain or gas, but I haven't had a BM today, either. I don't feel the need at all to go...maybe because I didn't eat hardly anything the two days prior to the burger and hotdog.
I also had Honey Nut Cheerios with real milk yesterday and this morning. I am drinking sweet tea right now, and I had two normal beers last night.
I did mix the Questran 4-gram pack with some applesauce around lunchtime today. I am supposed to do that daily, but discontinue the Pepto.
So, I am praying that it will all be okay...although through my education on these boards, I am doubting it will be. So, until then, I will eat until I'm told not to eat whatever.
By the way, I was kidding about the furniture store storing stools, but I guess you got that. It just struck me as funny. :)
Thanks so very, very much!
Susan
Susan P
Hey there,
Well it definitely sounds like you don't need the Pepto! Maybe you are one of the lucky ones whose MC was drug-induced and the gene for food intolerances wasn't triggered. My MC I believe was drug induced as well by taking beta blockers. I seem to tolerate a lot of foods with the exception of gluten since I have Celiac. I ate dairy a month ago....not really on purpose. But had no reaction to it. But if I were to keep eating it, I may have issues. Your mentioning of the hamburger, hotdog and Cheerios you ate made my mouth water but at the same time made me cringe. And wow...no reaction.....terrific! But I have not given up the hamburger.....Udi's has hamburger buns that I think taste amazing. You should try them next time. They also have hotdog buns as well.
Good luck with the Questram. And let us know your stool testing results!
Terri
Well it definitely sounds like you don't need the Pepto! Maybe you are one of the lucky ones whose MC was drug-induced and the gene for food intolerances wasn't triggered. My MC I believe was drug induced as well by taking beta blockers. I seem to tolerate a lot of foods with the exception of gluten since I have Celiac. I ate dairy a month ago....not really on purpose. But had no reaction to it. But if I were to keep eating it, I may have issues. Your mentioning of the hamburger, hotdog and Cheerios you ate made my mouth water but at the same time made me cringe. And wow...no reaction.....terrific! But I have not given up the hamburger.....Udi's has hamburger buns that I think taste amazing. You should try them next time. They also have hotdog buns as well.
Good luck with the Questram. And let us know your stool testing results!
Terri
Diagnosed with Lymphocytic Colitis in July, 2012 then with Celiac in November, 2012.
Hi Susan,
Welcome!
Stress is hard on us. I found in order to go into remission I had to take care of myself first----kind of like the message you got on an airplane that tells a parent with children to put on your own oxygen mask first and only after your own mask is on then to assist with the childrens masks.
Are you able to access alternative transportation for your sister since it sounds like she is blind and can't drive to get to Drs appmts? My county has a free service that will transport folks that can't drive to Drs appointments. I think in my county the Drs offices or the Agency for the blind or Elder Affairs can set this service up. This a just a thought to maybe give you somewhat of a respite.
Best wishes,
Brandy
Welcome!
Stress is hard on us. I found in order to go into remission I had to take care of myself first----kind of like the message you got on an airplane that tells a parent with children to put on your own oxygen mask first and only after your own mask is on then to assist with the childrens masks.
Are you able to access alternative transportation for your sister since it sounds like she is blind and can't drive to get to Drs appmts? My county has a free service that will transport folks that can't drive to Drs appointments. I think in my county the Drs offices or the Agency for the blind or Elder Affairs can set this service up. This a just a thought to maybe give you somewhat of a respite.
Best wishes,
Brandy
Welcome aboard Susan, you've landed at the right place. This site offers a wealth of information and can teach you how to live with MC. MC is a disease you have for life but it can be knocked into a reasonable state of remission. It takes a while to get the knack this new way of eating. I am able to sit at work all day now and I can go for long periods without taking any medicine. The diet is individual: many people will mention foods that they can eat but you won't be able to. That is why keeping a food journal in the beginning is a great idea. I eat some things now (in tiny amounts) that I could not eat two years ago.
I look at my food list today and realize how long a list of "safe" foods I've developed. I keep a binder too where I store tried and true recipes.
Don't despair, your quality of life will improve and we are here to support you.
Best,
Cory
I look at my food list today and realize how long a list of "safe" foods I've developed. I keep a binder too where I store tried and true recipes.
Don't despair, your quality of life will improve and we are here to support you.
Best,
Cory
CoryGut
Age 71
Diagnosed with Lymphocytic Colitis Sept. 2010
On and off Entocort(Currently Off)
Age 71
Diagnosed with Lymphocytic Colitis Sept. 2010
On and off Entocort(Currently Off)
Susan,
Welcome to this forum. This group of people saved my life. I was SO alone with this illness. Friends and my son were sympathetic, but had no idea what to do. I was in the toilet so much I couldn't even sustain a conversation. The doctors were NO help at all.
Once I found these people I realized a) that I was not alone, and that b) my experience with doctors was almost universal.
Then the battle of the diet was joined, and since then I have been struggling to get my MC under some sort of control.
Best thing? I no longer have diarrhea 24/7.
Bad thing? My MC is constipation dominated, and I have a constant struggle to keep things moving along.
Norman? He has avoided this house though I have wooed him with the best of the best. I cannot figure out what he wants!
Worst thing? (or things)? the exhaustion (some days I am so drained I cannot get a sentence to come out of my mouth), and, in my case, the GERD.
But I have this forum with these incredible people, who will accept you while you moan and groan, embrace you, answer every question with patience and humor no matter what. And that is the lifesaver!
Welcome to this forum. This group of people saved my life. I was SO alone with this illness. Friends and my son were sympathetic, but had no idea what to do. I was in the toilet so much I couldn't even sustain a conversation. The doctors were NO help at all.
Once I found these people I realized a) that I was not alone, and that b) my experience with doctors was almost universal.
Then the battle of the diet was joined, and since then I have been struggling to get my MC under some sort of control.
Best thing? I no longer have diarrhea 24/7.
Bad thing? My MC is constipation dominated, and I have a constant struggle to keep things moving along.
Norman? He has avoided this house though I have wooed him with the best of the best. I cannot figure out what he wants!
Worst thing? (or things)? the exhaustion (some days I am so drained I cannot get a sentence to come out of my mouth), and, in my case, the GERD.
But I have this forum with these incredible people, who will accept you while you moan and groan, embrace you, answer every question with patience and humor no matter what. And that is the lifesaver!
Re: Hello, Friends!
You're probably similar to me. I can eat the same thing everyday and have different reactions to it. One day i am fine, one day I am not. When your symptoms aren't as severe, it is hard to not be in denial. I have been in denial for a year and a half. But I am now taking steps to try to correct it.Susan P wrote:Okay, here is what is happening with me as of yesterday. I know I am in denial, and I SO appreciate every one of you understanding this is a normal reaction and I am grateful to all of you for having patience with me.
I called my GI doc yesterday morning, and they called me right back and had me come in to her office. I told her of all of my worries about the gluten, lactose, and she told me they would use the stool they already had from me from my recently colonoscopy, and then she typed into her little computer, and voila! The tests for gluten and lactose tests for allergies to these foods has now been ordered.
She took me off of the Pepto and prescribed me Questran packets, which you sprinkle on applesauce.
I do have a couple of questions. So, here goes:
If any of you "slip up" and eat gluten (or whatever you can't eat), how long after you eat this do you begin to have problems?
I have basically NOT changed my diet...other than gluten-free pretzels, and I've seen no difference in my diarrhea. In fact, I'll go several days with NO diarrhea, but still have not had a normal BM yet...although some have been close. Is this a good thing?
I went to my son's baseball game (a double-header) yesterday in the freezing cold, and I have to admit that I ate a hamburger AND a hot dog. I was so hungry that it was the BEST hamburger I've ever had, even though it was from a concession stand.
I have had NO problems at all since eating that approximately 19 hours ago.
Again, thanks for your patience and for allowing me to be in denial. Please pray that the allergy tests are negative.
All the best to my new friends,
Susan
An Update
Hi Dear Friends,
Here is what is going on with me. I haven't had diarrhea in well over a week, but I also had not had a BM. I am now taking a 4-gram packet of Questran daily. I mix it with applesauce or yogurt.
I have NOT changed my diet, and I am still waiting on the test results for the gluten and lactose.
Aside from eating that delicious hamburger with all the trimmings and that hot dog with mustard, chili, and slaw, I also ate two plates of barbeque at my son's baseball "Lead-Off" banquet on Thursday night. I also had banana pudding (yum).
I'm also still eating my Honey Nut Cheerios with regular milk every morning.
I didn't feel any pain or gas after eating any of the above things. Nothing. No need to go to the bathroom whatsoever.
BUT, guess what? After having diarrhea for about ten weeks now, I FINALLY had two NORMAL bowel movements...yesterday and today. Totally normal. I almost posted it on Facebook...I was so excited.
So, does anyone out there think this changes things?
Thanks for listening and for being there,
Susan
Here is what is going on with me. I haven't had diarrhea in well over a week, but I also had not had a BM. I am now taking a 4-gram packet of Questran daily. I mix it with applesauce or yogurt.
I have NOT changed my diet, and I am still waiting on the test results for the gluten and lactose.
Aside from eating that delicious hamburger with all the trimmings and that hot dog with mustard, chili, and slaw, I also ate two plates of barbeque at my son's baseball "Lead-Off" banquet on Thursday night. I also had banana pudding (yum).
I'm also still eating my Honey Nut Cheerios with regular milk every morning.
I didn't feel any pain or gas after eating any of the above things. Nothing. No need to go to the bathroom whatsoever.
BUT, guess what? After having diarrhea for about ten weeks now, I FINALLY had two NORMAL bowel movements...yesterday and today. Totally normal. I almost posted it on Facebook...I was so excited.
So, does anyone out there think this changes things?
Thanks for listening and for being there,
Susan
Susan P
Hi Susan,
You appear to be enjoying an episode of spontaneous remission. How long it will last remains to be seen — it might last a day, or it might last for years. At any rate, enjoy it while it lasts, because very few of us are so lucky.
Tex
You appear to be enjoying an episode of spontaneous remission. How long it will last remains to be seen — it might last a day, or it might last for years. At any rate, enjoy it while it lasts, because very few of us are so lucky.
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.