Newbie to forum, CD~not so much

[MaestraMate]

Hello, I was diagnosed with Crohns in July 2000, age 26, while studying in Costa Rica. It was kinda of scary going in for an emergency appendectomy and awaking to a small bowel resection. I speak Spanish so that wasn't the scary part. My doctor was so supportive and explained to me what had happened and that it was a North American disease. I left a week later for the states and was re-hospitalized with a bowel obstruction from eating all the wrong stuff. After the doctors spent a couple of days doing a ton of tests, they confirmed Crohns (really??):ysmile:

The first year was the hardest to figure out the meds and food situation. My Crohns is mild/moderate. I'm on Pentasa and Aza. Since that life-changing day, I got married and have two children, both while on my meds. It's interesting to see that my friends are more supportive and understanding of my Crohns than my family. My family is quite clueless, because I look healthy, I'm skinny so what's the deal. My friends will go out of their way to make sure that when we come over there are "friendly" foods for me and even when we go camping with a group, they make sure that the group site is near indoor bathrooms.

I am also a teacher (middle school Spanish/math) and have encountered a few students with Crohns. I am not shy about my disease and always am willing to listen.

This past school year I actually started to calendar diary to keep track of bm's and issues I was having hoping to see patterns. Food side-effects appear usually 24-36 hours after I eat so I'm finding it challenging to always trace the latest culprit in my diet. Fiber and ruffage is a nemesis as are seeds and spicy meats (no brats for this WI girl). My daughter had lettuce for the first time a few years ago and commented about how good it was and why can't we have it at home (makes me sick). Both of my kids think broccoli is assume and gladly eat my portion since I can't.

That's me in a nutshell (yeah, can't eat that either!) It's getting late and I need to go tame this rash from the sun that seems to have taken over my body (thanks aza!)

Thanks for reading and I know I'll get a lot out of this forum, it's already confirmed so many things just cruising through some different posts!

 

[JDTM]

Greetings from an ex-'Sconnie! You'll find a few other people on here from Wisconsin as well. Sorry about the brats; hopefully you can still enjoy cheese curds from time to time!

Anyways, glad to hear that your disease is mild/moderate -- the goal is to keep it that way. I'm almost in the same boat as you: taking Pentasa, tapering off budesonide, and if it doesn't hold, the next possible step up medication-wise is azathioprine. I'm curious as to how long you've been on it and how well it's worked for you. Also, do you happen to know where your disease is located? Confined to the ileum, or is it elsewhere in the GI tract?

Again, welcome and thanks for sharing your story! Keep us updated on your progress.

 

[David]

Hi there and welcome! Thanks for joining and sharing your story

Food diaries can indeed be difficult from the delayed reaction perspective. For example, someone might think a food is safe but it's causing damage to their villi or increasing the permeability of their intestines and don't correlate that with the issues they experience much further down the line. I'm not yet sure what we can do to resolve that other than slowly work to list foods that do that and educate people about it.

Anyway, it's really great to have you here. See you around!

 

[Angrybird]

Hello and welcome to the forum, glad you have decided to join What issues were you having again and have you noticed any improvement with modifying your diet? Is your doc aware that you have been having problems under your current treatment regime med wise and if so what did they have to say about it?

AB
xx

 

[MaestraMate]

I've been on azathioprine since Jan 2001. In July 2009 I was put from 125-150 mg. No issues with it It was the one med I was told I may have to had gone off of when I had kids, but I did some research and talked to a great Dr. from U of Chicago who had done studies with women and at low dosages aza was a good category drug to take.

My Crohns is in my ileum in my small intestine on my right side, though there have been some spots seen in my colon.

I wish I could say that I have had some "great" improvement modifiying my diet. People seem to encourage food diaries for IBD as a way to figure out triggers. I thought I had found out the hard way over the years, but there are always surprises. I figured I'd start to keep track of monthly, weekly, daily habits to see if there are patterns. So far nothing really stands out.

Thanks for the the questions!