What Do You Attribute Your Flares To?
- Thread starter AgentM
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- Joined
- Jun 23, 2020
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- 99
For me, it's nouns
... like; people, places, and things
Just kidding , (mostly
)
Actually, defining a flare, and what triggers them is difficult for me, because about half the time "something aint right"
Some days are better than others though, and like you, I'm trying to teach myself how to have more better days
I just joined this forum recently, and I've noticed there's some really saavy folks here, with lot of excellent advice and experieinces to share
I've noticed this board was more active in the past and many things can be covered by searching
I kinda suck at that, but i just keep plugging away, and many of my questions get answered that way
It might help the more experienced members here if you could define what you're calling a flare
... are we talking single day misery, or a whole week (or more) of hell?
What symptoms are you having?
Are they consistent day to day (like timing of the bathroom runs and the like?)
Sometimes, I can go weeks with no worries
Other times, it's just a feakin trainwreck, with constant diareha, nausea and the like
... no diet changes / minimal (or even none) change in outside circumstances, and yet all of a sudden,
.... I'm taking an e-ticket ride on the crohn~a~coaster
Sucks, but, it just comes with this condition
The good news is ther's a ton YOU do about it!
I think keeping a food diary is a very helpful tool to identiying some *potential * trigger foods
I know I've found a few suprises in my diet by keeping one
kraft single slice cheese slices really mess me up now, and my wife used to make me grilled cheese all the time, no worries
I think nother thing to watch for is changes in your daily pattern
If you sleep more/less or change what or when you eat or worse, skip a meal, things can get wonky
One big thing for me is how things are going on a personal level
I find that one thing goes wrong, and then another and then another, and well, things just turn to shit
That last one is a tough one, and it's causes can be different for erverybody
... and so the solutions will be different as well
I've been eliminating toxic people out of my life, and walking away from negative situations
Recently, I'm just been telling folks I don't feel good, and I'n gonna take a break / go walkabout ... deal with it
The good ones will still be there when you return refreshed and ready to get back to work,
and the others, well, they don't get to play in my life anymore
love me, love my dog, we're a package
Just know, if you keep plugging away at doingthe testing the doctors order, (advocate for yourself if you have to)
gather your own data,
do your own researching and ask questions,
... you will find answers for your specific circumstances / clinical presentation
you willl find there are solutions and workarounds to your unique challenges
The key is to stay positive, pick a critical path and stick to it
Listen to your doctors, ask good questions when you don't understand something, do the best you can do stay positive, and thing's will get better
Good luck, and hang in there man
... you got this, just gonna be rough for awhile
If you need anything, just post up
... like; people, places, and things
Just kidding , (mostly
)Actually, defining a flare, and what triggers them is difficult for me, because about half the time "something aint right"
Some days are better than others though, and like you, I'm trying to teach myself how to have more better days
I just joined this forum recently, and I've noticed there's some really saavy folks here, with lot of excellent advice and experieinces to share
I've noticed this board was more active in the past and many things can be covered by searching
I kinda suck at that, but i just keep plugging away, and many of my questions get answered that way
It might help the more experienced members here if you could define what you're calling a flare
... are we talking single day misery, or a whole week (or more) of hell?
What symptoms are you having?
Are they consistent day to day (like timing of the bathroom runs and the like?)
Sometimes, I can go weeks with no worries
Other times, it's just a feakin trainwreck, with constant diareha, nausea and the like
... no diet changes / minimal (or even none) change in outside circumstances, and yet all of a sudden,
.... I'm taking an e-ticket ride on the crohn~a~coaster
Sucks, but, it just comes with this condition
The good news is ther's a ton YOU do about it!
I think keeping a food diary is a very helpful tool to identiying some *potential * trigger foods
I know I've found a few suprises in my diet by keeping one
kraft single slice cheese slices really mess me up now, and my wife used to make me grilled cheese all the time, no worries
I think nother thing to watch for is changes in your daily pattern
If you sleep more/less or change what or when you eat or worse, skip a meal, things can get wonky
One big thing for me is how things are going on a personal level
I find that one thing goes wrong, and then another and then another, and well, things just turn to shit
That last one is a tough one, and it's causes can be different for erverybody
... and so the solutions will be different as well
I've been eliminating toxic people out of my life, and walking away from negative situations
Recently, I'm just been telling folks I don't feel good, and I'n gonna take a break / go walkabout ... deal with it
The good ones will still be there when you return refreshed and ready to get back to work,
and the others, well, they don't get to play in my life anymore
love me, love my dog, we're a package
Just know, if you keep plugging away at doingthe testing the doctors order, (advocate for yourself if you have to)
gather your own data,
do your own researching and ask questions,
... you will find answers for your specific circumstances / clinical presentation
you willl find there are solutions and workarounds to your unique challenges
The key is to stay positive, pick a critical path and stick to it
Listen to your doctors, ask good questions when you don't understand something, do the best you can do stay positive, and thing's will get better
Good luck, and hang in there man
... you got this, just gonna be rough for awhile
If you need anything, just post up
Last edited:
- Joined
- Jun 23, 2020
- Messages
- 99
GI Jane said it better, and with way less word~i~fication~alism
The causes are many, but food and stress are both key players in tipping the balance unfavorably
I found this forum way late in my research
(I was mostly using google scholar, looking for nutritional supplementation information for my particualr clinical presentation)
I found a post (by Kiny, I believe ) breaking down a research paper/study I was working thu that brought me here
What an incredible group of saavy folks with first hand experieince this board has
We all have our pet theories, mine is that it takes more than one thing to tip the balance
I'll let other people chime in with better information, and I hope you get some good answers
... and I'll leave you with this thought to ponder
What is your emotional state when you're having these episodes?
For me, I seem to flare when I'm feeling sad or hopeless
I did find a good workaround for it I'd like to share with you
Have a good day
... just do it ...
Get up early and go to the park, go fishing, spend some time with good friends helping them with something (kinda tough this year), play with your favorite toys, clean your house (or car), find a quiet place and read a good book
... but do ... something ... anything ... productive
... whatever brings you some peace and solace
Checking things off a list always helps me (I hate undone chores)
My go to is "give my dog a good day"
I'll just drop everything, grab my dog and hit the road with no particular destination
... any day my dog has a good day, so do I
The causes are many, but food and stress are both key players in tipping the balance unfavorably
I found this forum way late in my research
(I was mostly using google scholar, looking for nutritional supplementation information for my particualr clinical presentation)
I found a post (by Kiny, I believe ) breaking down a research paper/study I was working thu that brought me here
What an incredible group of saavy folks with first hand experieince this board has
We all have our pet theories, mine is that it takes more than one thing to tip the balance
I'll let other people chime in with better information, and I hope you get some good answers
... and I'll leave you with this thought to ponder
What is your emotional state when you're having these episodes?
For me, I seem to flare when I'm feeling sad or hopeless
I did find a good workaround for it I'd like to share with you
Have a good day
... just do it ...
Get up early and go to the park, go fishing, spend some time with good friends helping them with something (kinda tough this year), play with your favorite toys, clean your house (or car), find a quiet place and read a good book
... but do ... something ... anything ... productive
... whatever brings you some peace and solace
Checking things off a list always helps me (I hate undone chores)
My go to is "give my dog a good day"
I'll just drop everything, grab my dog and hit the road with no particular destination
... any day my dog has a good day, so do I
Wow, thanks for the amazingly thoughtful and caring replies!
I'm honestly not sure what a flare is. I never totally got rid of the blood so maybe I've been in a flare for 8 months. It didn't look too bad when scoped, and I did try some sulfasalazine which made me good and sick. I went without anything for a couple months and was somewhat successful, and I believe it was job responsibility type stress that I take too seriously that probably threw me into this current situation - 2 weeks of profuse bleeding and steroids to try and control. Not over yet. So I'm not sure if I ever got out of the flare to begin with or if I'm in it now. I can't seem to get a definitive answer as to what defines a flare. I have a sigmoidoscopy on Monday. This is worse than I ever imagined. There's got to be a good way out. I can't see taking meds that downgrade your immune system, but I will if I have to for sure. There's got to be a better way. I was taking a lot of antibiotics so I wonder if that had an impact - I know it can. But mostly I see stress as the cause. I'm trying to look into how to heal the gut. Don't really want to try SCD because it doesn't look like enough calories for me. I'm already 97 pounds down from about 100-102 (I'm small). Thanks for all your help!!!
I'm honestly not sure what a flare is. I never totally got rid of the blood so maybe I've been in a flare for 8 months. It didn't look too bad when scoped, and I did try some sulfasalazine which made me good and sick. I went without anything for a couple months and was somewhat successful, and I believe it was job responsibility type stress that I take too seriously that probably threw me into this current situation - 2 weeks of profuse bleeding and steroids to try and control. Not over yet. So I'm not sure if I ever got out of the flare to begin with or if I'm in it now. I can't seem to get a definitive answer as to what defines a flare. I have a sigmoidoscopy on Monday. This is worse than I ever imagined. There's got to be a good way out. I can't see taking meds that downgrade your immune system, but I will if I have to for sure. There's got to be a better way. I was taking a lot of antibiotics so I wonder if that had an impact - I know it can. But mostly I see stress as the cause. I'm trying to look into how to heal the gut. Don't really want to try SCD because it doesn't look like enough calories for me. I'm already 97 pounds down from about 100-102 (I'm small). Thanks for all your help!!!
- Joined
- Jun 23, 2020
- Messages
- 99
You got this man!
You're doing the right things
You're asking the right questions, and it looks like your care team is putting in work
... pretty damn cool how they are stepping up for you and expiditing testing in these trying times!
please be sure to thank them for their efforts!
It would help them a bunch if you logged some information about your symtoms
If you're like me (and I'm not saying you are, you sound pretty "together" ) I have trouble remembing things well, and just make a total hash of it when they ask for specifics
Maybe make some notes would help make most the most out of your face to face time
(good docs like data!)
for starters, your symptoms/bleeding/just general symptoms
a diet log (what you eat/how well you tolerate it)
med list / how you're taking them / well they are working, what (if any) side effects you're having
anything you're doing at home (supplements/exercises/p.t./
please include anything that's helping calming for you like meditiation/relaxation (things that are helping you cope) etc
this is critical, as they can help you a ton on this topic and other mental health impacts of this condition
.... you just gotta ask ...
... sucks, because this is a tough thing to do, ( ihad a really hard time doing it myself)
however, it has made ALL the difference day to day, and went along way towards getting staff on board with ,my approach/goals
I had no idea how much it would help just to have that resource advocate for me when things werent going well at the clinic and they really helped when communication got rough
So cool that they are getting you in!
Make the best of this opprotuninty!
Follow all the prep instructions to the letter!
there's a lot you can do at home to prepare for this procedure
the better you prep, the better this testing group will go, and the better the data will be
You're gonna some good data from this, and that;s going to help guide your care team on the most sensible path forward
Goood luck, and post up any and all questions you have
There's some super smart folks here that live this ... they have knowledge and perspective doctors just ... don't ...
p.s. don't lose any more weight, boss
check out the diet supplement area of the board for ideas
... hell ofa lotta awesome information in there
It's where many of us have found really good ways to build an individual, targeted nutrional plan that help us cope
You got this man, just stay the path!
You're doing the right things
You're asking the right questions, and it looks like your care team is putting in work
... pretty damn cool how they are stepping up for you and expiditing testing in these trying times!
please be sure to thank them for their efforts!
It would help them a bunch if you logged some information about your symtoms
If you're like me (and I'm not saying you are, you sound pretty "together" ) I have trouble remembing things well, and just make a total hash of it when they ask for specifics
Maybe make some notes would help make most the most out of your face to face time
(good docs like data!)
for starters, your symptoms/bleeding/just general symptoms
a diet log (what you eat/how well you tolerate it)
med list / how you're taking them / well they are working, what (if any) side effects you're having
anything you're doing at home (supplements/exercises/p.t./
please include anything that's helping calming for you like meditiation/relaxation (things that are helping you cope) etc
this is critical, as they can help you a ton on this topic and other mental health impacts of this condition
.... you just gotta ask ...
... sucks, because this is a tough thing to do, ( ihad a really hard time doing it myself)
however, it has made ALL the difference day to day, and went along way towards getting staff on board with ,my approach/goals
I had no idea how much it would help just to have that resource advocate for me when things werent going well at the clinic and they really helped when communication got rough
So cool that they are getting you in!
Make the best of this opprotuninty!
Follow all the prep instructions to the letter!
there's a lot you can do at home to prepare for this procedure
the better you prep, the better this testing group will go, and the better the data will be
You're gonna some good data from this, and that;s going to help guide your care team on the most sensible path forward
Goood luck, and post up any and all questions you have
There's some super smart folks here that live this ... they have knowledge and perspective doctors just ... don't ...
p.s. don't lose any more weight, boss
check out the diet supplement area of the board for ideas
... hell ofa lotta awesome information in there
It's where many of us have found really good ways to build an individual, targeted nutrional plan that help us cope
You got this man, just stay the path!
- Joined
- Jan 31, 2017
- Messages
- 1,042
This helped me get in remission for over 3 years once, no meds.....but then the war and divorce and ya back on biologic. It's a strict diet at first but felt so healthy.....I should try again.
http://makersdiet.com/about.php
http://makersdiet.com/about.php
Thanks very much for this all important information! The team was interested in my details at the start, but now they are interested in getting me on the biologic despite the details. I just want to stop bleeding. It's been going on for over two weeks despite the prednisone, although the steroid helps a bit. I'm out of my head between the bleeding, steroids, and the sinus infection I got from being dehydrated. I'm terrified of going on a biologic. Thank you so much for your help, I really need the cheering and support!
Yes, I read the story about this man a few months ago and ordered some probiotics. He's amazing. I don't understand why some people figure it out and others don't. What I don't get is that some make it work somehow but the answer seems so elusive. I'm happy you were in remission for 3 years! It sounds like stress could be the source of your need to go back on the biologic. BTW, I didn't see the diet itself on the page you linked.
I see, I'll check out his books! Good luck getting strong again. I'm trying - taking prednisone right now and so sick from it I'm but dr says to stay on it. Going out of my head.
- Joined
- Jan 31, 2017
- Messages
- 1,042
Ya that bites....Dr might put me on steroids until I'm able to get approved for Entyvio again. The military VA always takes forever but worth it since it's paid for 100%. Haven't been on steroids for years.....I'm horrible on them with no sleep and anger.....ya not fun for sure. Hopefully you wont have to be on prednisone for too long. Take care.
Thanks. I really appreciate your support, understanding and camaraderie. This sure is trying!
