i have had the worst day in months....i am so ready to give up and cry...this is absolutely insane and crazy! why? i have been so good all week, no dairy, making everything by scratch (which i have been doing for a little while anyway)- i can't take it anymore! if the pathologist said my colitis was a minor case, then really, why are the meds not helping??!! it really can't be just a food issue!ready to cry!
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
ready to cry!
i have had the worst day in months....i am so ready to give up and cry...this is absolutely insane and crazy! why? i have been so good all week, no dairy, making everything by scratch (which i have been doing for a little while anyway)- i can't take it anymore! if the pathologist said my colitis was a minor case, then really, why are the meds not helping??!! it really can't be just a food issue!-
TooManyHats
- Rockhopper Penguin
- Posts: 550
- Joined: Fri Jan 14, 2011 9:30 pm
- Location: New Jersey
i am on 2 entocort a day and 3 asacol hd a day....called dr. yesterday and asked to see if i should be on more asacol...recommended dosage is 2 pills 3 x a day...he said that was fine to do, i did not start that yet b/c i am actually going to see another dr. on tues. want to wait to see what he has to say about things.....i am a cut and dry kind of gal and this is too much for me....i want to know why....maybe i won't ever know why...as far as soy goes, i have no idea. i am sure it was in something i ate, but i don't know off hand and if it was soy i would assume i would have had these bad reactions sooner than today still being on the meds? why today you know??
Willabec,
I'm so sorry that you're having a bad day.
The ups and downs of MC can be very discouraging.
I'm not sure if you've had the Enterolab testing. I didn't see your results in the list. If you haven't had the testing, you might want to consider it. It helps eliminate a lot of the guessing by testing the most common intolerances. Once you remove your major intolerances, you will have more days without D. You will likely still have some bad days - we all do - but they should be less numerous.
Gloria
I'm so sorry that you're having a bad day.
The ups and downs of MC can be very discouraging. I'm not sure if you've had the Enterolab testing. I didn't see your results in the list. If you haven't had the testing, you might want to consider it. It helps eliminate a lot of the guessing by testing the most common intolerances. Once you remove your major intolerances, you will have more days without D. You will likely still have some bad days - we all do - but they should be less numerous.
Gloria
You never know what you can do until you have to do it.
-
Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Even after weeks or months of not having any symptoms, a stressful day at work or fighting a cold i will have a burst of symptoms.
even when you have the meds/diet/ other supports of MC management figured out, things can change, and quite often at the worst time.
For many, stress is a big factor to trigger MC symptoms, we have all had days like you are having.
The thing that used to get me down big time was a midnight accident, which meant changing sheets and generally meant tears of frustration, and i didnt get back to sleep for hours.
this may sound easier said than done, take some deep breaths, try not to feel helpless. If your body has decided today is a rest and frequent toilet day you kinda have to go with it. Fighting it or resenting it will cause more stress.
even when you have the meds/diet/ other supports of MC management figured out, things can change, and quite often at the worst time.
For many, stress is a big factor to trigger MC symptoms, we have all had days like you are having.
The thing that used to get me down big time was a midnight accident, which meant changing sheets and generally meant tears of frustration, and i didnt get back to sleep for hours.
this may sound easier said than done, take some deep breaths, try not to feel helpless. If your body has decided today is a rest and frequent toilet day you kinda have to go with it. Fighting it or resenting it will cause more stress.
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
-
Joefnh
- Rockhopper Penguin
- Posts: 2478
- Joined: Wed Apr 21, 2010 8:25 pm
- Location: Southern New Hampshire
Hi Willabec this can seem frustrating at times and there are times that I never could figure out what caused a flare up. It can be as simple as fighting off virus or an ingredient that was noticed in a food item. Especially early on it can seem like 3 steps forward and 1 or 2 back at times. This does not mean that the meds or diet are not working, it only means the path to wellness takes a while. If there is anything I have learned with MC is patience and more patience.
I know you are having a bad day now and its hard to see, but things will get better. It sounds like you have addressed the diet and the cooking issues and are working with your doctor on meds.
Hang in there this can be frustrating, but just like you had several good days this week, you will have them again and as you get better you will have more and more of them.
Take care
--Joe
I know you are having a bad day now and its hard to see, but things will get better. It sounds like you have addressed the diet and the cooking issues and are working with your doctor on meds.
Hang in there this can be frustrating, but just like you had several good days this week, you will have them again and as you get better you will have more and more of them.
Take care
--Joe
Joe
Sorry you're having such a bad day. Unfortunately, many pathologists don't understand MC any better than most GI docs, and they do a grave disservice when they proclaim any case to be "mild", because they usually base that judgment on the lymphocyte count, and research shows that the lymphocyte count has absolutely no correlation with the severity, or the duration of symptoms. Pathologists who volunteer such unnecessary, (and incorrect), observations, and those who don't bother to stay abreast of current research developments, are often the cause of unnecessary worry and anxiety for patients.
Remember that most of us cannot reach a stable state of remission, just by avoiding most of our food sensitivities. We have to avoid all of them, otherwise we will continue to react.
Tex
Remember that most of us cannot reach a stable state of remission, just by avoiding most of our food sensitivities. We have to avoid all of them, otherwise we will continue to react.
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.
Willabec,
Sorry you are having such a bad day, been there, done that, but I have found there is so much help on this board, and we all have been there, only I did cry, lots of times. I find that stress is the worst thing that sets my flares off. It will get better, and everyone here is so helpful, I'm new here too and have found so much help here.
Judy
Sorry you are having such a bad day, been there, done that, but I have found there is so much help on this board, and we all have been there, only I did cry, lots of times. I find that stress is the worst thing that sets my flares off. It will get better, and everyone here is so helpful, I'm new here too and have found so much help here.
Judy
I've cried many times over this ridiculous disease. I've had many pity parties I call it. Sorry you are having one now but the good news is that it is ok and we all understand!!!!! The only plausible explanation I've been given is that I contracted a virus of some sort which caused MC to kick in. It happens with other autoimmune diseases as well. A friend of mine has a son and when he was pretty young he came down with some kind of flu and that kicked in Type I diabetes. He had the genes they said. I guess we have the genes and something triggered it. I think eliminating some foods is key to managing this disease. The hard part is figuring out which foods. Check out the MRT results. We are all different!
Pat
Pat
Hang in there Willabec!
It really can be foods, or stress, or just because...! We have all been there. As Gabes said, one of the worst things is messing yourself in the bed, especially when you don't wake up right away. Or falling asleep on the toilet, and when you try to get up, your legs don't move, and when you finally get up, you have to go right back to the toilet. Or, being stuck on the toilet while throwing up into a trash bag.
And, as Tex said, most GI doctors and pathologists know nothing about the realities of MC. We are all here for you. You will make it through this. It won't last forever.
Love,
Mags
It really can be foods, or stress, or just because...! We have all been there. As Gabes said, one of the worst things is messing yourself in the bed, especially when you don't wake up right away. Or falling asleep on the toilet, and when you try to get up, your legs don't move, and when you finally get up, you have to go right back to the toilet. Or, being stuck on the toilet while throwing up into a trash bag.
And, as Tex said, most GI doctors and pathologists know nothing about the realities of MC. We are all here for you. You will make it through this. It won't last forever.
Love,
Mags
Dear dear, Wellabec
You have every right to cry. I have many times and I am sure I will again. This disease is not easy, especially when so few people seem to understand it.
BUT........there are many, many people here who do understand......the emotional side, and (I think/hope) we are making good headway in understanding the treatment side.
I am thinking about you and all going through hard times with MC, hang in there...... IT WILL GET BETTER, ant
You have every right to cry. I have many times and I am sure I will again. This disease is not easy, especially when so few people seem to understand it.
BUT........there are many, many people here who do understand......the emotional side, and (I think/hope) we are making good headway in understanding the treatment side.
I am thinking about you and all going through hard times with MC, hang in there...... IT WILL GET BETTER, ant
----------------------------------------
"Softly, softly catchee monkey".....
"Softly, softly catchee monkey".....