If you could offer ONE piece of advice to a Crohn's suffere

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GoJohnnyGo

GoJohnnyGo

One Badass Dude
Joined
Aug 3, 2008
Messages
1,615
Keep your file active with your gastro. Make yearly visits even if you're feeling fine.
 
If your not getting the treatment you need at the dr, cry. Not kidding. They only took me seriously when I cried at the office. Suddenly I was on Humira and feeling better!
(One piece of advice is too hard to pick. Maybe if I post again each will only count as one.)
 
Don't eat things that you shouldn't - even if your body feels better.
Last year I felt SOOO good, and ate cajun chicken, popcorn, spicy mayo and cole slaw all in one meal. Big mistake.
 
My Butt Hurts said:
Don't eat things that you shouldn't - even if your body feels better.
Last year I felt SOOO good, and ate cajun chicken, popcorn, spicy mayo and cole slaw all in one meal. Big mistake.
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That's a good one.

I've found that getting plenty of sleep is very helpful. I'm usually okay if I get 6-7 hours. But if I go like 3 days in a row of 6 hours or less, I start going downhill fast.
 
get photocopies of all of your test results/medical records. it seems doctors don't discuss or explain or even mention some of the results... so get them and start researching and probing more. ask questions!
 
My Butt Hurts said:
Don't eat things that you shouldn't - even if your body feels better.
Last year I felt SOOO good, and ate cajun chicken, popcorn, spicy mayo and cole slaw all in one meal. Big mistake.
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Totally great advice! Also love the one about crying...that always gets me somewhere at the doctor too!

My advice would be to take it easy. Don't go overboard with eating or physical activity. Your body is going through a lot and even if you feel great you have to remember the toll it can take on you physically. I would over do it and then feel horrible for a week after...live and learn!
 
dont let doctors push you around or not listen. remeber that theyre not gods and that they dont have all the answers, even if they act like they do. yes they are experts in medecine, but living with your disease qualifies you as an expert too and you should be treated that way.
 
Find a good support system and if there are people who are unwilling or unable to help support you then remove them from your life if need be.
 
Do what you have to do to get better and treat yourself well enough to keep it in remission as long as possible.
 
jamie2462 said:
Do what you have to do to get better and treat yourself well enough to keep it in remission as long as possible.
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This includes brow-beating, crying, cursing, et al. :tongue:
 
If your not happy with your treatment, or feel your not being taken seriously.... Change consultants, change Hospital, change doctors.
 
If your current treatment isn't working, remember that there are dozens of other options out there.

and

Take advantage of the time you have between flares. Do everything you wouldn't be able to do while flaring.
 
Realize having this disease doesn't make you weak. Realize that you can still be a functioning person in society, and realize that the only thing holding you back is yourself. Sometimes you have to recover, and that's okay... fight when you can, and take it easy when you have to.
 
pick your battles to conserve energy. A lot of people will think it is just a toilet issue... unless you have a lot of energy.. don't even bother trying to explain it (especially if you expect they will piss you off). Re-route them to the internet to do their own research. If they want to know about it - they will look it up.
 
My best piece of advice is don't overdo it during an intermittent flare, too many times last year I was out of hospital and on pred and I've thought WOW I'm feeling better! Then absolutely hit it like crazy!..... My body didn't thank me for that, just remember to take it easy sometimes :)
 
good bump, Silvermoon, thank you.


my one piece of advice...

never, ever, give up fighting - whether it's for diagnosis, treatment, belief, help - whatever. we have a right to feel better, to get the help we need, and we know when we're not getting it - so don't settle for 2nd best and don't let the blues take your fight away.
 
I’m rubbish at stuff like this but I’ll give it a bash anyway.

There are things you can do not just things that you can’t.

Laugh about the embarrassing situations that come your way with because stressing out will make it ten times worse.

Mark.
 
Don't ignore anything, even if it seems minor. You too could wind up with a bag!! lol
 
Cindy, I was going to say something similar...look out for yourself and your symptoms. If you see something change, call your doctor right away. You could head off a lot of heartache and hospital visits this way. :)
 
It's easy to start to feel like a hypochondriac (especially if you are dealing with more than one condition), but remember, you are your own best advocate! You know what is and is not normal for your body, so don't apologize for complaining to others or making yet another doctor visit...
 
You have Crohn's Disease, but you don't have to "become" Crohn's Disease. You have a mind, body, and soul with a Greater purpose. Don't allow Crohn's Disease to define who you are.
 
You don't have to justify yourself to anybody!
Stay away from confrontations, rise above it and don't bite!
Look after number one, that's you, always!
rest, rest, rest, rest, rest, rest, rest and rest!
 
Don't let what the doctor says to get in your way. If you feel like you aren't getting the proper treatment, or they simply aren't listening to your voice and telling you that you have no cause for concern, find a doctor who will listen.
 
I can never seem to find advise to add to this thread, but I like it so much.... bumping again.... lol
:redface:
 
I would tell them about this forum and all the wonderful people and information that's here.
 
Dont live one day at a time PLAN things even if when the time comes you will not be able to perform the plans.

Sorry guys I am a planner! :hug:
 
This is actually advice my wife reminds me of quite often. If you think Crohns is the end of the world, visit a Childrens Hospital where kids have diseases that they have little chance of being cured of. There's always someone worse off than us. We can still have a good life.
 
Pirate said:
This is actually advice my wife reminds me of quite often. If you think Crohns is the end of the world, visit a Childrens Hospital where kids have diseases that they have little chance of being cured of. There's always someone worse off than us. We can still have a good life.
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I think Janis and my husband are in cahoots, because my hubby says the same thing, there is always out there worse than us. My mother always says if we piled all our problems on the table you would probably take your own back. We just got to live our lives when we can and enjoy those moments as much as possible ;)
 
There is nothing wrong with having an ileostomy if your doctor says you need it to improve your well being. If you had to choose between living in the bathroom 24/7 along with a sore tushy & gut, an inflamed large colon w/fistulas & abscesses or getting your life back you would want to feel better wouldn't you if all other avenues have failed??

I've had mine since the age of 17 due to 3 fistulas, several abscesses, and an entirely inflamed colon. If I didn't have my appliance, I'd be severely ill and not able to eat or enjoy my life.

Also, look into joining the local CCFA and ostomy support chapter near you to meet others who have ostomies before surgery to eliminate any questions or concerns you may have. That will also diminish your fears about living with an appliance.

The pts. I've visited before and after surgery have all said the same thing, "We have our lives back and we wish we would have chosen to do this sooner because the visitations have alleviated our fear/concerns, we learned aren't the only ones living w/an appliance, and nobody can tell we have a bag unless we choose to tell them". :thumleft::thumleft:
 
Jettalady said:
Ok..ok I will bite, don't do anything stupid...like what? :tongue:
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Ok Penny, I know that you just wanted a chance to stick out your tongue at me!!!:). My intention by my statement was to live your remissions as a child. As Dusty once said to me, an 18 yr old in remission is the same as an 18 yr old w/o crohns. A 10 yr old in remission is the same as a 10 yr old w/o crohns. There is an important difference though, an 18 yr old is much freer to make harmful decisions than a 10 yr old.

I can't help but believe that remission, while maybe never permanent, can't help but at least be extended by proper diet, not smoking or drinking, skipping meds etc.. That's all I meant:ytongue:...
 
I know I had to make a funny but those bad things I did after my first resection, but there were no computers then and not much information on it. So I had to wing and and ignore what I didn't know what I did read was serious. So yeah I was stupid!
 
People do get better, you just wont see them on a support forum too much. Taking care of yourself makes it last longer.
 
I would say watch everything you eat you soon learn what upsets you and what does not ! eat little and oftern it always help me. And talk about it dont be frightened let people know, smile grit your teeth at the pain and smile again laugh and enjoy the good days !
 
Dont keep everything inside. If something doesn't feel right in your body.. tell someone, and your doctor. U are #1! If you dont have someone you feel comfortable talking to.. get over it! Find a friend, a support system.. There's always someone who does care no matter what your history is. Take a step in faith.. and remember to smile! :D
 
Never feel guilty for being sick and stop comparing yourself and your life to those who don't have Crohn's. You're doing the best you can under the circumstances and you're doing great :D
 
seaofdreams said:
Never feel guilty for being sick and stop comparing yourself and your life to those who don't have Crohn's. You're doing the best you can under the circumstances and you're doing great :D
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Excellant advice, Nicci.
We are who we are, not who others are. We have a disease, but we still have a life. Its just up to us to make it the best we can.

Never lose sight of the fact that we are individuals that have learned to deal with the cards dealt us and we do a damn good job of it. We are strong.
 
decorate the bathroom, your gonna spend a lot time there, so you may as well have a nice colour scheme.
 

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