Community Forum

Have a question, or want to share your own tips and experiences? Join the discussion in the community forum. You must be registered to participate. Our forums are moderated by Crohn's & Colitis Foundation staff to facilitate a safe environment.

Some advice from a long-term Crohn's patient


Tue, November 23, 2010 2:35 PM

Hey there -
After reading the gloomy stories of members here, especially the newly diagnosed, I just thought I'd give a little pep talk...and some unsolicited advice.
You can do it!  I was first diagnosed with Crohn's when I had an emergency resection (fistula, abscess, peritonitis, etc.) when I was 25, in 1995.  I'm now 40 and live a very active, normal life.  In addition to the usual city stuff (museums, movies, friends), I backpack and go rafting in the summer, and ski in the winter.  Yep, my CD is still active, but kept in check with my friends Imuran and Lomotil. 
My advice?  Take a very active role in your health (and I bet you already do, if you're here).  If you're unable to do what you like, keep pestering your doctor until you make some progress.  If you're not making headway with your existing doctor, find one you like.  We tried a variety of meds until I found the combination I like.  Your doctor should be up to speed with the latest research and thinking on IBD.  Don't be afraid to ask what they do to stay current, and how they view your situation in that context.
I'm also constantly tweaking my diet.  Unlike many other chronic illnesses, there are no hard and fast rules about what diet works best with IBD.  When I was first diagnosed, I was seriously lactose intolerant.  I LOVE dairy, however, so over the years, I reintroduced hard cheeses, then yogurt, and then just about all dairy.  That was fun for a few years, until last sprint, when I noticed I was spending lots more time in the bathroom.  Cutting way down on dairy helped tremendously.  Likewise I stay away from stuff I know will give me trouble (in my case, raw veggies, dairy and spicy foods) if I expect to be away from a toilet.

FPO violet222
Joined Nov 23, 2010

Mon, December 27, 2010 11:32 AM

 Reply posted for violet222.

Thank you for the suggestions!  

One of my concerns is that when advocating for myself, I always end up butting heads with nurses/dr (usually it's the nurses that give me problems or make things difficult).  I'm doctorless right now and need a remicade infusion in a week and 1/2.  I'm sort of freaking out. 

FPO alivein315
Joined May 30, 2009

Sun, December 05, 2010 3:51 PM

 Reply posted for violet222.

It is so nice to hear something cheery from someone who has living with this illness!  Thanks for sharing

 

Simone

Mom to 13 yr old with UC

diagnosed 12/08 - currently on 50 mg 6MP & Florastor

FPO mom2one
Joined Dec 5, 2010

Fri, November 26, 2010 7:05 PM

 Reply posted for violet222.

Whitney,
I'm curious about the over-the-counter meds you listed, specifically, what the difference is or how you decide which to take. What are the different situations for which you would take Pepto, Tums and Gas-X? I'm asking because you seem to have this figured out. I've been trying to come up with a similar regime myself, but haven't had much luck. (I'm not a severe case and haven't had surgery or anything, just lots of bloating, indigestion, constipation and diarrhea [and pain]).

Also, I've tried Immodium numerous times, but it has been less than reliable. Is Lomotil much better? I'm surprised my doctor never mentioned it.

Anyway, thanks for the advice in your initial post.

- W

FPO crohney baloney
Joined Nov 26, 2010

Wed, November 24, 2010 8:13 AM

 Reply posted for violet222.

I love your story........Keep up the positive attitude and having fun!

Happy Thanksgiving. 

Lizzies Mom

FPO lizzies mom
Joined Sep 9, 2009

Tue, November 23, 2010 8:52 PM

 Reply posted for violet222.

Hi,

Thanks for the positive post.

 

 

 

FPO antonyde
Joined Jan 11, 2009

Tue, November 23, 2010 2:36 PM

 Reply posted for violet222.

Also: don't be afraid to use over the counter drugs.  I'd be sunk without anti-diahrreals and anti-gas meds.  I carry a small "Baggie of Intestinal Goodness" that includes Lomotil, Immodium, Pepto pills, acetominaphen, Tums, and Gas-X.  At events I always bring toilet paper and in the backcountry I add a trowel.
Instead of focusing on these very minor lifestyle changes, I focus on all the fun I am ABLE to have.  I'm so lucky to have health insurance, and live in a time when we have affordable treatments. 
I know that  many of you have more serious cases than I do, and to you I say: Crohn's sucks.  I'll do my part to raise research money for a cure, and I hope all of us do the same.
Cheers!
Whitney

FPO violet222
Joined Nov 23, 2010

Related Topics

IBD and trauma
Author Image Janeliza
Joined Apr 13, 2022

Hi all! I've had Crohn's since 2014 with m....

read more

Life Insurance?
Author Image Aperson1
Joined Dec 2, 2022

40 y.o. male looking to get life insurance.  ....

read more

IBD and exercise/sport
Author Image JS25
Joined Aug 14, 2023

This is my first post. I am 28 and I was diagnosed....

read more