Newbie!

[bluebeary]

I have been diagnosed with Crohn's for 4 years now. I have never posted on a forum before but the older I get, the more it bothers me. Not just symptoms, but I have a hard time dealing with it mentally. I started taking antidepressants recently that help. I don't know anyone else with Crohn's although a have a lot of family members with other autoimmune diseases.

I found out I had Crohn's disease when I was 20. I had pain in my right side and went to the ER. They thought it was my appendix but after doing a cat scan they found I had a perforated bowel and did a resection. I have tried many different medicines and have been on steroids a few times (which are the worst! I always have horrible side effects) and was finally put on Remicade. It helps more than anything else I have been on. I still have a lot of joint pain and next month I have an appointment to see an arthritis specialist. It makes me feel so much older than I am! But, hopefully it helps.

Recently, I have had changes in my triggers. I don't know if this is common? I can eat some things I couldn't before now and also can't eat some things I could before. I also have been getting really fatigued which I haven't had before and it is bothering me.

I'm new to this, but I hope it helps!

 

[David]

Hiya bluebeary and welcome! Thanks for making our forum your first choice for joining one We're glad to have you.

When they performed the resection, do you know the specific part of your intestines they removed?

Whenever I hear "fatigue" and "resection" in the same post, my very first thought is always vitamin B12. Do you get your vitamin B12 levels tested? And if so, what is your level? I'm also curious if you get your vitamin D levels tested?

We also have a good entry on Crohn's Disease and fatigue in our wiki you may want to read.

I'm not sure how common changing triggers is. However, it makes sense to me that it would happen to people as their disease state changes. Hopefully others can comment on that.

Again, welcome

 

[bluebeary]

Thanks, David! No, I have never had my B12 levels tested. It's funny how much I learn about this disease all the time. You would think after having it a few years I would know most everything. After reading some of other's posts, I noticed they do a lot more with things like that than I ever had. I have had a little trouble with my doctor and I'm thinking about switching. I go back for my Remicade infusion here soon and will mention my fatigue.

It's nice to talk to people who know what I feel. I have a lot of great support, but sometimes they just don't fully understand. Not that it's their fault, I'm glad they don't! But it's good to know you're not the only one going through this.

 

[David]

The most common place for resection related to Crohn's Disease is the terminal ileum. That's also where vitamin B12 is absorbed. However, even people with Crohn's Disease with a fully in tact terminal ileum are commonly deficient as CD can interfere with every step necessary for successful vitamin B12 absorption. So yes, PLEASE get your levels tested (and vitamin D and folate while you're at it) and get the actual number for each result, don't let them tell you, "low normal".

 

[bluebeary]

Sorry, I forgot to include that last time. Yes, mine was at the illeum. It was right near my appendix which is why they thought that's what it might have been what it was at first. They took my appendix out since it was right there also.

I don't understand why my doctor hasn't mentioned this to me before. This gives me more of an incentive to switch. So if my levels are low, would I have to start doing b12 infusions or does just taking extra b12 help?

 

[David]

I have no idea why they haven't either. Ask them, maybe they have a good reason I can't think of If they say something like, "Your MCV isn't elevated" or "You don't have any signs of megaloblastic anemia" or, "It's not necessary" do this: :facepalm:

If you're low, chances are you will need injections. Getting B12 to an optimal level AND keeping it there can be tricky for someone with Crohn's Disease. Some will say HIGH DOSE oral can do it but I haven't seen proof of that getting people above 500 pg/ml. There are some newer forms out like intranasal and patches but I'm not sure how well they work. It's extremely important to get your levels tested somewhat regularly so you can figure out what form of delivery and dosage are best for you. Once you plateau in an optimal range for awhile then testing can become less and less often.