What is normal?

[Christina]

Hi! I just posted this in my "I'm new!" introduction email, but I thought I would post it here too, just in case more people read this section.

I was diagnosed with Crohn's four years ago. Life is not perfect, but it's not too bad either. I am coming to this forum mostly to compare notes. I want to know what is "normal" when living with Crohn's. Of course, everyone is a little different, but well, here goes . . .

The Crohns affects my large intestine and rectum/anus. Currently I take Cimzia, Apriso, and Azathioprine. I take 2 Immodium every morning. Generally, I am also on an antibiotic and Canasa too. I live with a couple of small fissures that just never seem to heal up even with medication - they bleed a lot, but generally don't hurt. I have 2-5 movements a day, just depends on the day and what I eat/drink. While I do have a few triggers (caffeine, fatty foods, and I think Diet Coke), I don't have too much trouble with food. But I do have to run to the bathroom after dinner most nights of the week and every morning after b'fast, and I don't always make it. I have REAL incontinence issues, which is my biggest complaint.

So my question is: With all the medication am I taking, should I be symptom-free or is the reality that I will always have these problems and I should start learning to accept it and live with it? Do you live symptom-free or do you have Crohns problems on a regular basis?

That's me! Let me know what you are thinking . . . Christina

PS I have also been on Remicade and Humira without better success. My doctor seems to have accepted the situation, but I am not quite ready to yet.

 

[Crohn's 35]

HI Christina, welcome! I think your post will get moved to YOUR Story thread, and that is where everyone can greet you. With certain meds, I know we are looking to be symptom free but it is not always the case. Control is more of the goal I set for myself anyways. Cimzia works for many, and the other drugs do help but being on imodium everyday is not a good idea. Talk to your doctor about Questran , it helps alot of people here to control diahreah. Controlling that helps alot of other symptoms be the lesser of the symptoms.

I was on Remicade and Humira, and no success either, my Gi thinks that Cimzia isnt for me,besides it isnt in Canada yet.

Glad you were persistant to come on here, everyone is great here, lots of support. Welcome aboard.

 

[BLM]

Im wondering the same thing....what is normal?? For me I think normal is some D, but most BMs are normal, no nausea, not too much pain, and good energy. Im not sure though as Im still on a lot of meds, and newly diagnosed....I think....or they think....nobody is absolutely sure yet....good luck. And if you figure out the answer please let me know....

 

[Cat-a-Tonic]

I don't think there is a such thing as normal anymore! Just when I seem to think I know what my body is doing, it throws me for a loop. Hopefully I'll have a better idea of normal when I get a diagnosis and get on some long-term medication. But I suspect I'll always have to be on my toes a little bit and not get too comfortable in any one definition of "normal."

 

[Astra]

Hi Christina and welcome
can't remember whether I've already said hi in Your story
I've got such a steroid brain at the mo!

If I could define 'normal' for me, it would be no D, no pain, no fatigue, no joint pain
just gotta find that happy medium
as a matter of interest, have you been on any steroids? absolutely no D with them, eat what you like, time for a med change after 4 years?
xxx

 

[Christina]

Wow! No symptoms! That's something I would like to attain.

I am at the point now where my doctor seems to be comfortable with where I am at, but I don't know whether I should accept my quality of life now or try a new doctor??