I talk about myself enough here ― my struggles, my frustration, my pain. I thought it might be interesting to interview some of the people in my life and get their views of what it’s like to live with someone who has Crohn’s disease.
First up is my husband.
1.What do you remember about the year before I got diagnosed?
Not much. It must have been more normal for you than it is now. I don’t remember you without this, but I know it wasn’t as long as I think.
(My comment: This is interesting because I was sick as a dog the year before I was diagnosed. I was in bed a lot and lost a ton of weight. I frequently needed help taking care of our daughters, who were just 3 and 6 then.)
2. What do you remember feeling like when I was diagnosed?
I didn’t know much about it at the time. I really didn’t know the path you would take. When someone is initially diagnosed with any chronic disease, you never know what course it will take.
(My comment: I had no idea it would be so serious. I just thought I could take come medication and be fine.)
3. What has it been like living with me sick for the last 17 years?
Not easy at times. Having a chronic disease myself, I understand things, but Crohn’s is different. It affects you more internally than mine. I have pain, but I am not doubled over in pain or having to use the restroom every hour. My arthritis is mostly controllable with shots and drugs, but it seems that Crohn’s is not an easy one to cure.
(My comment: My husband has an auto immune disease called psoriatic arthritis that we knew about before we were married. Mostly, it’s just an annoyance to deal with, but doesn’t cause the kind of everyday pain and suffering that IBD does.)
4. What is one thing you could change about it, besides it disappearing?
If you could go off of a few of your drugs, like prednisone. That is one of the drugs that I don’t like for your future health.
(My comment: I have been on prednisone nearly non-stop for years because none of the other medications have really worked for me. I already have osteoporosis from it.)
5. How do you feel things are going now?
Seems a little better with the Stelara (ustekinumab), but you never know. Doesn’t seem to be the right fix and each case needs different and special attention by the gastroenerologist. Also seems that the doctor throws darts sometimes and has no idea what to do (not his fault). Just he is running out of things to do.
(My comment: We both get frustrated as we go to doctors’ appointments and he sort of sits there and thinks out loud, “Maybe we could do this? Maybe we could do that?” “There aren’t a lot of choices for you right now.”)
6. What do you hate most about it?
The gas (phew!)
(My comment:I admit, I win the prize on that one.)
7. How do you think our lives would be different if I didn’t have Crohn’s?
I think you might have been able to work more of a part-time job or even full time after the kids have gone. That could have changed our financial position. But we are still OK and we will be OK, no matter what.
(My comment:This has been a constant challenge for us in the past few years as we’ve seen friends be able to live much more comfortable, stable and financially secure lives. I’ve questioned over and over again if I could work a job outside the home with this disease. I’ve been able to, at least happily, work part time as a writer and novelist from home to have a career and make a little money.)
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