Iroduction and such!

[VictoriaSage]

Hello! I'm Victoria and I just recently found this forum! I was diagnosed with Crohn's wile doing a medical study at the National Institute of Health for my genetic disorder: Turner's Syndrome.

Initially my doctors thought that I had Celliac disease; but with a blood test and a Colonoscopy (yaaaaaay -_-) they determined that it was instead Crohn's.

I was put on Pentasa and have had a weird relationship with it. I am really bad at remembering to take it since it has so may doses. Also I get hit really hard with light-headedness and fatigue while on it. Although, the fatigue may just be because of Crohn's. I'm trying once again to be very good about taking it.

I've also had trouble with anemia. I couldn't keep the pills or liquid forms down, so I had to get infusions. After a bad reaction to the first type of iron (Dextran) I was put on Ferrleset and it seemed to work fine.

Recently I've been trying to research helpful foods, since I can't seem to really keep much of anything down. It's so confusing though! I keep hearing of things to avoid, and almost all foods seem to be ruled out!

Anyway, that's about it! Thanks for reading and nice to meet you!

 

[TheyCallMeRC]

Hey Victoria and welcome to the forum. There are a lot of foods that you really do have to avoid because they can irritate the crohns and even cause blockages. But there are a lot of other foods that some people can tolerate and others can't. I can eat certain things when I am feeling good but when i have a flare up then they are murder on my intestines. if you haven't already, check out this section of the forum: Diet, Fitness and Supplements. You should be able to find a ot of the info. you are looking for there and plus I am sure others will respond in here too and help you out. Good luck with everything and again, welcome to the forum

 

[David]

Hi Victoria and welcome to the community Thanks for sharing your story!

Whenever I hear "fatigue" when it comes to Crohn's Disease, the first thing I think of is vitamin B12 deficiency. Have you been tested and if so, what is your level? People with Crohn's are commonly deficient and fatigue is a common symptoms. Interestingly, B12 deficiency can also lead to a form of anemia. However, if you have regular iron deficiency anemia, that could be the cause of your fatigue as well. We also have a pretty good wiki entry on fatigue found here you may want to read.

If you're having trouble keeping food down, you may also want to discuss having your magnesium levels tested with your doctor. In addition, I'd research enteral nutrition which could not only give you the nutrients you need, but be an additional treatment option as well. If it sounds interesting, discuss it with your doctor

And finally, being in Alaska, get your vitamin D levels tested if you haven't Deficiency is common in people with Crohn's and proper supplementation can make a big difference.

Again, welcome to the community!

 

[chickadees]

Welcome! I live in Alaska too and was recently diagnosed with Crohn's after suffering with what was thought to be IBS for 15 years. It seems my depression, fatigue, facet Joint/back pain, etc.. may be related to Crohn's. I'm being treated for low Vit D, B12 & Iron/Ferritin levels and am starting to feel better with injections and taking lots of supplements. I found it very difficult to remember to take everything on a regular schedule and use medset/pill boxes which helps me. I haven't even begun to eliminate foods and learn which groups may effect my gut and ones that I can tolerate. It's a daunting task!

 

[VictoriaSage]

Thank you RC, David, and chickadees for your responses! I probably am really low with vitamin levels and such. Once I get a doctor figured out, I will probably work on getting that worked out. The clinic I've been going to (because it's sliding scale) apparently can't handle a "complex case" like mine, so I'm being referred somewhere else. Hopefully I'll be able to figure the money out.

 

[David]

Best of luck to you! Please keep us updated