The tips you think every IBD sufferer should know

[mikeyarmo]

I thought maybe we can compile a few threads that would be good to have stickied on the top that basically include some of the best information we can provide to new sufferers (or even to long-time sufferers) as to what we as a whole collectively agree upon.

Just add some point form notes or sentences if you prefer about some tips you would give to any other sufferers of Crohn's Disease or Ulcerative Colitis. It is fine if they overlap with others, as this will allow the best tips to be discovered and included.

Here are some of mine:

• If you have a treatment that is working for you (and is nutritionally sound) stick with it
• What works for others may not work for you.
• To feel in control, learning about all the options available to you can help, but you will find a lot of contradictions that can make things frustrating
  A food diary can help spot trouble foods, and if you include your feelings
• can also show the role stress plays in your condition as well as what events cause stress
• Asking for help is not a sign of weakness. Listen to your body and appreciate the support that is provided to you
• This condition will not kill you, so do not stress over it. You will get through it all, so try and do it with a positive attitude. A little laughter never hurt anyone, and it actually helps.

These are some of mine, so please repeat ones you agree with and/or add your own.

 

[Jeff D.]

I agree with having a treatment for you and its making you feel better then you should stick with it.

I also agree with the food diary and it is often the best way to learn which foods cause you a problem.

If you start to feel nervous then just sit down close your eyes and relax as stress at least to me is a big thing.

Everyones different.

 

[Valentina]

good thread Mike, I will think about this, and hopefully post something.
youve got some really good ones in your list.

 

[flying4frogs]

Great Advice!!!!

 

[Skinsfan1229]

Dont be afraid to go aggresively at the disease. A lot of GI's are starting witht the harder drugs then just a little asacol here, a little pentasa there, some are STARTING with Remicade, STARTING with the immuno-modulators, not a bad idea to me, get it under control before it gets out of hand.

Dont be scared, all meds have side effects, they just advertise the harsher side effects as scare tactics it sseems.

 

[mikeyarmo]

Dont be scared, all meds have side effects, they just advertise the harsher side effects as scare tactics it sseems.

That made me think of another point.

Not taking medications or not seeking help due to side effects has its own side effects. You will need to deal with painful symptoms and your condition can deteriorate that you will need to go to the doctor eventually, but in much worse state than you would have previously!

 

[Kev]

Treat it like a job... Work at it, but not 24X7. A focus like that is not good. If you let it (illness) become your life, then what have you to look forward to. Keep your life!

Treat yourself like a 'loved' one.. Make sure you get the attention/affection/support you need... even from yourself. Schedule some 'me' time, and do something 'FUN!!'

If you don't agree with what the Dr tells you, tell them.. Seek 2nd & 3rd opinions. It's better to ask first then find out later that you may have had other & better options.

When docs disagree, relax. Go with majority, or your personal fav., or flip a coin. You aren't gifted with 20/20 foresight, neither are the docs. Just take your best shot, OK

Find a 'vent'.. Seems IBD sufferers tend to bottle things up. That can be hard habit to break.. OK, so find an alternative... (one that is legal, non life threatening, or that will NOT alienate your friends/family/loved ones, etc..) Can't tell the better half to get stuffed? Or your GI to stick the colonscope up their own colon? Go chop some wood, howl at the moon, cry yourself to sleep... Whatever! Something/anything that allows you to get rid of any pent up hostility, anxiety, resentment. Whatever it is you've stored. Even if you have to do so all alone during 'me' time!

 

[cookey]

That was my first thought Mike, laughter the best medicine. Self pity..is the worst...as we know from a former members post way back when. Although there is no evidence that stress causes flares to Crohns, it is best to try to avoid stressful situtations. I found for myself, if I was worried or concerned about something happening in my life..it would normally result in a flare, coincidence..who knows?

Advice for women, if you're thinking about getting pregnant while suffering with this Disease..of course it is best to talk to your Doctor before doing so, most children born to women are unaffected. However, some children are more affected then most adults. Resulting in abnormal growth.

Great topic Mike!!

 

[Jeff D.]

I cannot believe that doctors have not figured out that stress can relate to flares. It seems something that everyone has a problem with when they get stressed they get flares. Sorry for that

I like Kev's treat it like a job idea because if you dont then you will get lazy. When you are working you cant get lazy because you will get fired for someone who wants to work more. But for those of us with IBD then if you get lazy you will get a flare.

 

[cookey]

I agree Jeff whole heartedly about doctors not knowing for sure if stress is a factor. It does seem that many of us, if not all, are affected in some way. Then again, there is not a whole lot doctors are sure about when it comes to Crohns/Colitis. Sugar was once the fault for causing C/D..heridatary was another factor...they still say no, I'm not quite convinced myself. Once again we are left in the dark to decide what may or not be the end result.

 

[andilynn09]

Make sure you give you follow your treatment as you're supposed to, and give it a fair shot to work before you abandon it or decide to try something else.

Do your best to avoid stressful situations (ha), and learn what things relax you....it's amazing how stress can effect the way you feel, and quickly.

Do as much research as you can yourself on the disease. Sometimes you can find things your doctor may not know about, and it just helps to be prepared/familiar with symptoms, complications, and side effects.

Lean on your friends and family when you need to. Having that support can make all the difference in the world.

 

[GNC Crohn's Man]

Another thing to consider is if you just read something in an article that helped a small test group DO NOT go out of your way to try to be in that next test group or to try to emulate the results until it is a PROVEN means to treat your condition...

I pointed out many crohn's trials that are going on currently to my doctor... What he said is what I believe now... Crohn's is primarly an autoimmune disorder (meaning something is wrong with your immune system)... Various studies have said that the person's immune system is either too weak or to strong... None of the studies have determined which is true or not... So before you go off taking Viagra, swallowing tape worms, or doing something else that a small test group is doing... Know that these are just tests.... And 75% of them I have seen have shown improvment in the patients in the short term... Again that's the short term... The studies have not proven the long term side effects of these things or if It will even help crohn's in the long run...

So unless you just want to be a human guinea pig then stay away from the expermental drugs until they are proven to be effective and also so you know the possible side effects of taking the medication...

For example back in the day you might have taken remicade... Good drug... Has some bad side effects... You go outside of the country... You catch tubercolis...
You then die because your body had no way of fighting it off... Now they always do a TB skin test before you start your remicade treatments.. Also you should get a pheumonia vacination too before you start your remicade treatments..

See that's an example of a good drug helping people with crohn's but the bad/long term side effects were unknown at the time...

Me personaly I don't like playing russian roulette with my meds... I take various herbal supplements though that I change or modify my dosages on...
But these herbal supplements aren't nearly as strong nor do they have anywhere near as bad of side effects as prescription medication. (Unless you count the mesalamine based drugs like Pentasa which has virtualy no side effects)...

Ok I'm done ranting for now...

Maybe you can find some useful info in this incoherent mess I call writing..