Just when I thought I might be getting better after 13 months since my diagnosis with MC, everything crashes down around me yesterday. I've been GF for 7+ years, DF/SF for a year. Taking all my vitamins and supplements. Rigidly controlling what I eat, and I mean RIGIDLY controlling it. I never go out to eat. I never eat fruits and vegetables, except for white potatoes and very occasionally over-cooked carrots. Only meats? Fatty beef or dark meat chicken and I cannot tolerate that very often. Corn chex cereal with almond milk. God bless peanut butter and gluten free bread as it has been the one food my gut can tolerate and it slows down my intestines - it makes it possible for me to very rarely leave my house.
But yesterday? I decided I was so hungry for french toast - egg with gluten free bread dusted with sugar. I ate 3 slices. Within an hour, massive uncontrollable diarrhea for the next 3 hours. I did not make it to the bathroom for most of the attacks. Was wearing diapers. Had to strip off my clothes in the shower and clean up. Even then, it wouldn't stop. I think the only reason it stopped is my insides ran out of food to eject.
What did I learn from this?
1. No more eggs for me. I've had one slight reaction before but nothing like this.
2. No more sugar.
3. If this had happened when I was not at home, I cannot even imagine what I would have done. No possible way to clean up in a public restroom or someone's home. A diaper wouldn't have done any good.
4. I cannot leave my house.
5. I cannot go out in this heat for any reason. Even being outside for 10 minutes is making me violently sick. I am a prisoner to air conditioning until summer is over.
6. Every single person who is new to MC should understand that even after a year with this, like me, these awful days occur, they occur with no warning, they occur when you least expect them, and trying to clean up is awful. If I had still been working, it would have been impossible.
7. Just eating the "right foods", taking the vitamins and supplements, eliminating stress, avoiding heat and humidity, preparing 100% of the food that goes into my mouth so there is no cross-contamination, does not prevent days like yesterday.
8. I must be always vigilant. I cannot decide to give in and eat something that could make me sick as it will result in massive attacks of diarrhea that I cannot control and I will go back to square one.
Feeling low today but no stomach cramps. Made it thru the night without running to the bathroom. I am doing absolutely nothing for the next week and will not feel guilty for being "lazy". My life now cannot be what it once was and I must accept that I cannot do the level of activity I once did or I will pay for it by spending all my time in the bathroom and that is not where I want to live.
A learning experience.............
Gail
Warning! - Just when you thought you might be getting better
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Gail,
I'm sorry that you had such a major reaction. Of course it's possible that a combination of several issues may have contributed, but I have a hunch that the main problem (at least the immediate problem) was probably the sugar. After over 16 years of dealing with this disease, if I overdo my sugar limit, I still react. As long as the amount of sugar is low to moderate, I'm fine. But a little too much sugar is waaaaaaaaaaaaay to much sugar (at least that's what my body tells me).
A reaction that severe will waste a lot of energy and make us feel rough for a while, but hopefully it's past, and you will soon be feeling much better.
Tex
I'm sorry that you had such a major reaction. Of course it's possible that a combination of several issues may have contributed, but I have a hunch that the main problem (at least the immediate problem) was probably the sugar. After over 16 years of dealing with this disease, if I overdo my sugar limit, I still react. As long as the amount of sugar is low to moderate, I'm fine. But a little too much sugar is waaaaaaaaaaaaay to much sugar (at least that's what my body tells me).
A reaction that severe will waste a lot of energy and make us feel rough for a while, but hopefully it's past, and you will soon be feeling much better.
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.
Sorry about the extreme reaction you experienced. That would be awful and would be a horror if on the road.
On another web sight I quickly wrote about a similar experience I had a two weeks ago. Everything had been going well, my gut was good and energy levels nicely raised. I was pleased with the diet. I added two new foods to what I had been eating, and next thing I know I was terribly ill for a few hours. Some of the worst pain happened while I was in the car. Thankfully I was only 5 miles from home. Even though I was sweating greatly, I was driving extra careful following the speed limit. The last thing I needed was to be pulled over by the police I kept thinking.
For me at the time I narrowed the two potential offending foods down to cantaloupe or potatoes. I'm back to eating potatoes and have not had problems. I'll be passing on cantaloupe and other melons far into the future.
On another web sight I quickly wrote about a similar experience I had a two weeks ago. Everything had been going well, my gut was good and energy levels nicely raised. I was pleased with the diet. I added two new foods to what I had been eating, and next thing I know I was terribly ill for a few hours. Some of the worst pain happened while I was in the car. Thankfully I was only 5 miles from home. Even though I was sweating greatly, I was driving extra careful following the speed limit. The last thing I needed was to be pulled over by the police I kept thinking.
For me at the time I narrowed the two potential offending foods down to cantaloupe or potatoes. I'm back to eating potatoes and have not had problems. I'll be passing on cantaloupe and other melons far into the future.
Thanks, Tex and Blueberry. I think the sugar or eggs were culprit but I am unwilling to try either again EVER.
I ate a few pieces of fruit last summer early after my diagnosis when my doctor had told me "eat anything except gluten and dairy" and had no reaction but within a month all of that changed and I could no longer tolerate any fruit at all, even the bananas I was eating, so I just gave up, unwilling to put myself thru these violent reactions.
I so often watch cooking shows on TV or see a commercial for something I used to love to eat and it tugs at my memories of the days when that food was a favorite but it never makes me want to eat it. I know some people will eat these foods anyway and just tolerate the reactions they have but maybe their reactions are not as severe as what I went thru last night or in the past year. This is not "a little diarrhea". This is so far beyond that. And yes, Blueberry, being stopped by the police would be beyond awful. I've sworn if they tried to stop me, I would not stop, I'd keep on driving till I reached my driveway and then explain why. Arrest me if you want to, I'd hand him my MC card as I run into my house and jump into the shower. If he wants to wait in the driveway until I come outside again, OK.
I just feel like my life is out of control. I am a hermit. I can't even go to the grocery store and must rely on my daughter to do all of my errands. I have given up on trying to go anywhere, no vacations, no trips anywhere, no fun, for fear of these awful episodes. And since I never know what is going to set me off - is it something as simple as being outside for 10 or 15 minutes - how can I have a life? It is a good thing I am single, retired, have no close friends, no outside activities, and have accepted this hermit lifestyle. But gee, there are days when I really get down about this.
Thanks for letting me vent. I know there are so many of you all out there who are living the same life or who have been where I am now. You give me courage and help me laugh.
Gail
I ate a few pieces of fruit last summer early after my diagnosis when my doctor had told me "eat anything except gluten and dairy" and had no reaction but within a month all of that changed and I could no longer tolerate any fruit at all, even the bananas I was eating, so I just gave up, unwilling to put myself thru these violent reactions.
I so often watch cooking shows on TV or see a commercial for something I used to love to eat and it tugs at my memories of the days when that food was a favorite but it never makes me want to eat it. I know some people will eat these foods anyway and just tolerate the reactions they have but maybe their reactions are not as severe as what I went thru last night or in the past year. This is not "a little diarrhea". This is so far beyond that. And yes, Blueberry, being stopped by the police would be beyond awful. I've sworn if they tried to stop me, I would not stop, I'd keep on driving till I reached my driveway and then explain why. Arrest me if you want to, I'd hand him my MC card as I run into my house and jump into the shower. If he wants to wait in the driveway until I come outside again, OK.
I just feel like my life is out of control. I am a hermit. I can't even go to the grocery store and must rely on my daughter to do all of my errands. I have given up on trying to go anywhere, no vacations, no trips anywhere, no fun, for fear of these awful episodes. And since I never know what is going to set me off - is it something as simple as being outside for 10 or 15 minutes - how can I have a life? It is a good thing I am single, retired, have no close friends, no outside activities, and have accepted this hermit lifestyle. But gee, there are days when I really get down about this.
Thanks for letting me vent. I know there are so many of you all out there who are living the same life or who have been where I am now. You give me courage and help me laugh.
Gail
It really is a terrible disease, with all it's effects and something to vent amount. I've been known to do that. MC has been isolating for me too.
There has been a few times where I've been well and strong enough, for a long enough time that all the old fears went away. That hasn't been often, and why it occurs has been mysterious up to this point. I keep working away on my diet though. My hopes are up that I'm heading in a good direction.
I've begun also to appriciate centuries ago, dark ages doctors that used celestial events when giving medical reasons for why such and such medical event happened.
There has been a few times where I've been well and strong enough, for a long enough time that all the old fears went away. That hasn't been often, and why it occurs has been mysterious up to this point. I keep working away on my diet though. My hopes are up that I'm heading in a good direction.
I've begun also to appriciate centuries ago, dark ages doctors that used celestial events when giving medical reasons for why such and such medical event happened.
Hi, Gail. I'm sorry you had such a terrible episode. Do you mind if I ask how old you are? I know our bodies are all different and I wonder how much difference age makes. I'm 56, was 53 when I was diagnosed. I hope you're feeling better soon.
Marcia
------------
My mission in life is not merely to survive, but to thrive and to do so with some passion, some compassion, some humor and some style. - M. Angelou
------------
My mission in life is not merely to survive, but to thrive and to do so with some passion, some compassion, some humor and some style. - M. Angelou
-
brendaragland
- Posts: 16
- Joined: Sat Jun 04, 2016 11:21 am
I am terribly sorry that your going through a really rough time right now. I, too, have been on a two year run of the worst diarrhea I've ever experienced. Yesterday was a so so day and today I couldn't get to the bathroom in time at work and had an accident. My WORST nightmare. I came home, cried, showered and just felt awful. I fear I am heading to a stage where I can't leave my home either. I'm going to call my GI and try one more time with medication.
But reading your post has helped me in my quest for relief. I was unaware that heat and humidity are a factor. I'm going to start researching this new trigger. Its been very hot and muggy here. We don't have AC at home. I too believe even a little too much of anything can set it off.
Keep you chin up and your fists on the hips attitude.
But reading your post has helped me in my quest for relief. I was unaware that heat and humidity are a factor. I'm going to start researching this new trigger. Its been very hot and muggy here. We don't have AC at home. I too believe even a little too much of anything can set it off.
Keep you chin up and your fists on the hips attitude.
Brenda Ragland
HI Gail.....
You just described a very normal incident in the MC world we all have lived through I'm pretty sure.
Even myself this week I messed up and caved in to eating a few tiny falafels at my job....we are gearing up to restart the Fall semester at Whitman College and the fryer was cleaned out but my guess is I will never be able to tolerate anything that comes from the fryer ever again....and also garbonzo beans are soy related that should have been my biggest clue. Anyway ate it on Monday and I have been paying for it every day this week...luckily (and I feel I am) I only had my bad bouts of bathroom visits before I headed to work.
It is also in the 90's where I live and I too can not hang out in the heat like I once could when I was younger (I'm about to turn 49)...I am adjusting little things all the time and when we are tired we have to raise the white flag and give ourselves a break. If you do nothing then so be it
Just know that this to shall pass....your body will simmer down, it might feel like it will never get back on track...have faith
Note: I took a benedryl last night because I have not been taking anything at night and it really helped keep the urgent D at bay and let me sleep nicely a good portion of the night. I needed that....I may just do it again tonight, the better sleep I get the better my body feels the next day.
Hugs
E
You just described a very normal incident in the MC world we all have lived through I'm pretty sure.
Even myself this week I messed up and caved in to eating a few tiny falafels at my job....we are gearing up to restart the Fall semester at Whitman College and the fryer was cleaned out but my guess is I will never be able to tolerate anything that comes from the fryer ever again....and also garbonzo beans are soy related that should have been my biggest clue. Anyway ate it on Monday and I have been paying for it every day this week...luckily (and I feel I am) I only had my bad bouts of bathroom visits before I headed to work.
It is also in the 90's where I live and I too can not hang out in the heat like I once could when I was younger (I'm about to turn 49)...I am adjusting little things all the time and when we are tired we have to raise the white flag and give ourselves a break. If you do nothing then so be it
Just know that this to shall pass....your body will simmer down, it might feel like it will never get back on track...have faith
Note: I took a benedryl last night because I have not been taking anything at night and it really helped keep the urgent D at bay and let me sleep nicely a good portion of the night. I needed that....I may just do it again tonight, the better sleep I get the better my body feels the next day.
Hugs
E
To Succeed you have to Believe in something with such a passion that it becomes a Reality - Anita Roddick
Dx LC April 2012 had symptoms since Aug 2007
Dx LC April 2012 had symptoms since Aug 2007
-
Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Gail
I am sorry you had such a bad reaction to the french toast
the tough part is, a reality for a small percentage of MC'ers, there is limited scope to heal and to ever introduce small treats
(users Gloria and Lesley come to mind)
in your case, you are taking medications that are causing super high amounts of inflammation in your body, you have multiple health issues, even with the blandest eating plan, healing will be limited. Additionally it is going to take months (maybe years) of good levels of Vit D3 and magnesium to see improvements.
are you taking good amounts of Vit D3 and magnesium??
I am sorry you had such a bad reaction to the french toast
the tough part is, a reality for a small percentage of MC'ers, there is limited scope to heal and to ever introduce small treats
(users Gloria and Lesley come to mind)
in your case, you are taking medications that are causing super high amounts of inflammation in your body, you have multiple health issues, even with the blandest eating plan, healing will be limited. Additionally it is going to take months (maybe years) of good levels of Vit D3 and magnesium to see improvements.
are you taking good amounts of Vit D3 and magnesium??
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
.jpg){kind=avatar}
Gail - I am sorry you are having such a bad flare. I was once in the position you are in now. I was afraid to leave the house, afraid to even leave the bathroom much of the time. What has worked for me is being absolutely strict with my food. I haven't gone out to eat in nearly 5 years and prepare all my food at home. I continue to strictly avoid all the foods that Enterolab identified as problems so no gluten (or other grains), dairy, soy and other legumes and eggs. Also I eat no chicken and only very occasionally beef.. After about 2 years I was able to start adding vegetables back in. I don't eat any fruit except for the occasional berry. I now am able to take a long walk every morning, something that seemed absolutely unattainable when I started. Getting rid of the anxiety about leaving the house has been the hardest thing for me to overcome but it has happened. I still find myself hesitating sometimes but from the days when I was afraid to just step outside with the dog, the improvement is immense. I have been scared straight, so to speak. No food is worth being sick for. Stay strict and diligent and things are bound to improve.
Jean
Jean
Gail, when I first read your post I cried. You described my worst nightmare/fear. I have been a hermit since Jan 1 of this year and have just recently started to venture outside a short trip at a time. In fact, I actually just returned from a short trip to the farmer's market this morning. I was determined to get my hands on some fresh duck eggs and I had success! I hope these ducks work because I have not added hardly any variety into my gf sf ef beef f, chicken f, etc days. Also scored home grown squash (3 kinds). My next chore is to be able to go buy some clothes that fit my new 35 lb less body! But since nobody hardly sees me anyway I haven't been in a rush for that.
Anyway, hang in there. I hope each day you feel better and more in control. I'm pulling for you!
Laura
Anyway, hang in there. I hope each day you feel better and more in control. I'm pulling for you!
Laura
Wow, I feel I'd like to write each of you an individual personal letter as you each deserve such a kind personal response from me as you have touched my heart. Just knowing so many of you are going thru this also makes me feel better. I am 66 years old and I so often just feel like this 2 month old baby who shits all over herself, excuse my language. In fact, I don't even remember my baby ever making this big of a mess EVER. The sheer volume always amazes me. And once it starts coming, it doesn't stop. My deepest sympathies for all of you who have this happen at work, in your car, at a friend's house, at a store, or in any public location. I've had it happen in a store and my car and my front yard and multiple times inside my house. They just do not make adult diapers that can contain this - I guess they would have to be strong enough, absorbent enough, big enough, thick enough to handle an elephant.
I've just given up on food. Given up on ever trying any new foods, adding any new foods to my diet. This week as cured me of that. I've just lost all taste for anything and just don't even care any more. I don't lose weight as the food I can eat is not anything that will allow me to lose weight but I am thankful at least something, anything is not totally rejected by my body. After a year of battling this, I am accepting that this is my life.
I guess in my fantasy world, I wish with all my heart that any one of you lived somewhere near me and I bet that all of you wish the same thing. That I could pick up the phone and say, "Damn, I've had such a bad day today, how are you doing?" And just be glad to hear a voice of someone who goes thru the same thing. But since all of you are scattered all over the world and I'm here in Atlanta, I'll have to be thankful for this website that keeps us in touch.
I'm trying not to complain. I'm feeling better physically today. Just really hate how MC isolates all of us.
Hugs to all of you around the world. I do care about each of you and thank you so much for responding.
Gail
I've just given up on food. Given up on ever trying any new foods, adding any new foods to my diet. This week as cured me of that. I've just lost all taste for anything and just don't even care any more. I don't lose weight as the food I can eat is not anything that will allow me to lose weight but I am thankful at least something, anything is not totally rejected by my body. After a year of battling this, I am accepting that this is my life.
I guess in my fantasy world, I wish with all my heart that any one of you lived somewhere near me and I bet that all of you wish the same thing. That I could pick up the phone and say, "Damn, I've had such a bad day today, how are you doing?" And just be glad to hear a voice of someone who goes thru the same thing. But since all of you are scattered all over the world and I'm here in Atlanta, I'll have to be thankful for this website that keeps us in touch.
I'm trying not to complain. I'm feeling better physically today. Just really hate how MC isolates all of us.
Hugs to all of you around the world. I do care about each of you and thank you so much for responding.
Gail
I am taking my Vit D and Magnesium. I am guessing that it will take time to build up levels that were low as I've only been taken those new supplements about 3 weeks. Prior supplements were in tablet form. These are in crystal/powder form so I'm hoping for better absorption.
I eliminated the antidepressant 3 weeks ago. I still must have the Imitrex nasal spray or injections when I have migraines - there is no way I can ever give that up as nothing else has ever worked for my migraines when I have them.
There are times I feel like my life becomes more narrowly defined. Several years ago my life had many possibilities. A year ago those possibilities changed drastically but with this diagnosis but I still did not understand what that meant for the rest of my life - what vitamins/supplements I needed, daily living habits, foods to avoid, environmental issues, etc. The box that was my life became room-size. The room began to shrink over the past year as I remained so sick and I rejected more and more foods. As I realized that activities I once enjoyed were no longer possible, the walls of the room closed in.
Now I often feel like my life is the bathroom. Everything revolves around the bathroom. Is there enough toilet paper in there? Empty the trash can in the bathroom. Oh, crap, I have to take another show?????? Time to wash another load of laundry.......... Change my clothes again and throw more clothes in the wash........ Clean my shoes.........Clean the toilet again..........Take another dose of diarrhea medicine..........
Life as we know it.
I eliminated the antidepressant 3 weeks ago. I still must have the Imitrex nasal spray or injections when I have migraines - there is no way I can ever give that up as nothing else has ever worked for my migraines when I have them.
There are times I feel like my life becomes more narrowly defined. Several years ago my life had many possibilities. A year ago those possibilities changed drastically but with this diagnosis but I still did not understand what that meant for the rest of my life - what vitamins/supplements I needed, daily living habits, foods to avoid, environmental issues, etc. The box that was my life became room-size. The room began to shrink over the past year as I remained so sick and I rejected more and more foods. As I realized that activities I once enjoyed were no longer possible, the walls of the room closed in.
Now I often feel like my life is the bathroom. Everything revolves around the bathroom. Is there enough toilet paper in there? Empty the trash can in the bathroom. Oh, crap, I have to take another show?????? Time to wash another load of laundry.......... Change my clothes again and throw more clothes in the wash........ Clean my shoes.........Clean the toilet again..........Take another dose of diarrhea medicine..........
Life as we know it.
Hi Gail,
You should see improvements since you gave up the antidepressant but be aware it could take awhile....we're talking months here. DO NOT GET DISCOURAGED. The MC healing time table can take awhile.
A lot of MCers see migraines go away as they head into remission.
Consider swap out peanut butter for almond butter or cashew butter. Peanut butter is a legume (soy) and can cause problems for us.
You should see improvements since you gave up the antidepressant but be aware it could take awhile....we're talking months here. DO NOT GET DISCOURAGED. The MC healing time table can take awhile.
A lot of MCers see migraines go away as they head into remission.
Consider swap out peanut butter for almond butter or cashew butter. Peanut butter is a legume (soy) and can cause problems for us.
Hi Gail,
Not pushing drugs here and I can't remember your history but it sounds like you are really suffering.
Have you looked into the cholesterymines (I'm not sure of spelling)? Entocort or Uceris? Pepto regimen?
Again....a lot of folks go into remission without drugs and you may have already tried some of these.
Not pushing drugs here and I can't remember your history but it sounds like you are really suffering.
Have you looked into the cholesterymines (I'm not sure of spelling)? Entocort or Uceris? Pepto regimen?
Again....a lot of folks go into remission without drugs and you may have already tried some of these.