What's the ONE thing you wish someone had told you when you were first diagnosed?

Wow what a question!!! Hello everyone, I'm crossing over from the Crohn's forum for a visit here. In May 2011 I was diagnoses with Crohn's disease in the terminal ileum and told to take this med (Balsalazide) and you'll figure out what works for you. It could get better, or it could get worse. Hmmm OK, I was familiar with Crohns, but not quite as familiar as I am now. Now for most this means diarrhea many times a day, but being new to this, I was totally at a loss when I was just the opposite constipated!! Yes this is also symptoms of Crohns. Several months later and still have problems I had another colonoscopy this week and now I have UC as well.....It seems theres a small ulcer in there now. I give up!!! I keep trying to figure this out, but keep hitting road blocks.

Anyway, I guess my true answer would be to have someone stress to me the importance of diet and how to eat properly. In todays society most of us have become lazy and take the easy way out and grab it and go!! That just isn't possible anymore. Fresh fruits and veggies seem to be the hardest for me to digest but so are many other things. I know everyone is different and everything is trial and error, but this website and the people on it have really been a huge help!

Now taking Apriso, 6MP just added. Also take vit b12, D, E and magnesium. Also have hypothyroid, HTN and in the process of being worked up for blood in my urine.

Tell them that DIET DOES MATTER and have them checked immediately for gluten intolerance and celiac, i mean a broad panel of tests, not just the el-cheapo HMO brand celiac test.

     WOW, I just reread what I wrote back in 09 while still struggling with UP (proctitis).  A lot has happened since then.  I was still flaring in 09, could not reach remission and had become prednisone dependent.  I did follow my GI's advice and tried Remicade.  I had been on 6MP since 2002 but it didn't keep me in remission.  Well, Remicade failed after my 3rd infusion and I gave Humira a shot for three months...nada. 

     I had surgery, total colectomy with end ileostomy, on June 28, 2010.  I now have my life back.  My GI doctor was not a happy camper.  All he wanted to do was use me for a guinea pig.

     Honesty is what you want from the GI doctors, not so much procrastination like what I was handed for twelve long and suffering years!

How bad prednisone was on your body.

It's probably better to get on Imuran or 6MP right up front instead of dealing with multiple prednisone treatments and then dealing with the damage it does.

I wish I was given a kit like you're looking to put together. All I got from my GI's was "you've got colitis and I'm going to give you some drugs for it". I wish I was told;
- you'll have this forever, there's no cure
- meds will help with symptoms and may get it to go in remission
- it's going to challenge you and sometimes impact your lifestyle
- you may get depressed and feel down, talk to your PCP if you need help with some counseling to get you thru this.
- you may have some bad days with blood, cramping, and lots of urgency to go
- I'm going to set up appts to have you meet with a nutritionist, and a specialist to have a second opinion and discuss various drug therapies
- Here's some info about support groups and some good references for reading material.
- You're not going to be alone with this. I'll be there for you to help you and will always respond quickly to any questions and concerns.

Quite simply,
I wish someone had told me that eating stimulates your bowels.
I could have managed much better in those early months and years if I had known that.

I wish I was told

To get on this message board and trust that they know better than my doctor, at least my first one.

How easy you can relapse if you don't stay on top of things.

That the first year and a half can be a roller coaster until it gets under control.

I wish I had been told about blood. I had never had it because I had so much liquid diarrhea.