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What would you ask?

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Crohn's Disease
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Posted 6/29/2011 9:22 PM (GMT 0)
So I was at my niece's wedding, and my brother in law asked me to speak to his nephew. It turns out that the young man has Crohn's, and was diagnosed a few weeks ago. He's 16. His mom did most of the talking, and when I prompted him, he didn't know what to ask. And I realized, I didn't either when I was diagnosed. Honestly, I'm still not sure what I'd ask. It's been such a whirlwind of changing conditions that I struggle to pin down anything that seems particularly important to someone newly diagnosed.

So, given the benefit of hindsight, what would you folks have asked of your fellow Crohnie back when YOU were diagnosed?
Posted 6/29/2011 9:30 PM (GMT 0)
is there hope for normality? I still ask myself that some days. Then to be reassured that most everything we will go through is not in our heads!
Posted 6/30/2011 12:12 PM (GMT 0)
That is a really interesting question. I am not sure how I would answer it. Because I grew up with Crohn's and had lived with a patient my whole life, when I got the diagnosis, I really didn't have any questions, it was already my life. But over the years, I have been asked to talk to many people who have just been diagnosed, or family members of patients and I think the recurring theme is how normal a life can I have, and about treatments/cures. I try to give an accurate picture of the disease without scaring people. Mostly if I let them talk, the questions just come naturally.
Posted 6/30/2011 12:22 PM (GMT 0)
when I was young like that, and newly dx. I was just starting my career as a horse jockey, my Q, I asked them a lot was, when can I start riding again? My surgeon finally said to me. More than likely never again. 8 months later I was back in the saddle, and put in 16 years in the saddle, with cd as my quardian angel. this was in 1970-71. it was called ilitis, mine was regional ilitis, because it was just in my small bowel, there are a few others who had ilitis back in the day.

AG nobody knows what to ask, what is my life going to be like, will I be normal, will I work like normal people. those Q's are to easy, they don't seem like you will be anything but normal. those are the reality Q's
Posted 6/30/2011 12:34 PM (GMT 0)
I keep hearing the word normal. What is normal ? Isn't that different for each of us ? I really dont think there is a normal even for people without crohns . When I was diagnosed I was just so glad to finally have a name for what was happening to me that I was happy even when doc told me there was no cure . My only question to him was , OK , what do we do about it ? We are still working on that one but most people are working on life too.
Posted 6/30/2011 2:55 PM (GMT 0)
I don't really know what I would ask. But did you encourage him and his mom to join a support group? I find this place a wealth of information. I was DX at 21, small town, general GI given sulfasalazine post resection and sent on my way (30 years ago) with a pamphlet from the local colostomy group. When I started to flare badly again about 7-8 years ago I found a great deal of info on the web. Granted it was mostly medical facts from Mayo or such but it helped me understand this DD better. I would warn them not to be carefull of "cures" but to research as much as they can.

What should I have asked? How do I manage this? What are my treatment options? Should I see a nutritionist? When should I call the doctor? And when should I not take the doc's answer when I know darn well something isn't right? But most important should have been "Where is the closest IBD specialist?".
Posted 7/1/2011 11:29 AM (GMT 0)
I actually made a list at one point as we had a family member get diagnosed. But, she was in such deep denial (even her doc said she was cured!) that I realized she would not have listened to anything any way. I started with the answers I knew were most helpful as I found them, then made questions that fit those (hey I'm playing Jeopardy!)
How will this effect my diet and being able to eat with friends? Will this affect my sex life? Is it the same for everyone? What do you do when you are scared? How do you deal with the doctors? What should I know about the medicines?
At our support group, I usually let the new folks know that it is possible to have a "normal" life with some accommodations. I always tell them that it was really hard for me at first, but I have settled into it now and have learned to be educated about my disease and find ways to talk to people about it.
Posted 7/2/2011 6:16 AM (GMT 0)
Hello Everybody..I remember my first questions to doctor when I was nine and they told me I had crohn's. Will I live and how long do I have? I asked these questions because they had told me I had colon cancer the week before, two days before that I had sprue, and the day before that leukmia. All my mom and dad did was cry for two weeks and my older brother told me over and over I did not have long.. My next question was will I eat pizza again..The doctor told me yes and I could have as much as I wanted..But I lived to eat a lot of pizza and proved a lot of people wrong that I would not make it long time..30 years of good, bad, ugly and just let's forget about it..Good Luck, Mr.D
Posted 7/2/2011 6:59 AM (GMT 0)
Hello Everyone... I have Crohn's Disease and there can be normality.
I have been in remission for over 5 years. I am on Humira and a B-12
injection once a month. I live a normal life. But I do not forget that I have
this illness.
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