seeler
Illness and a granddaughter's concerns
Posted on: 10/02/2011 15:38
I suffered from Crohns' disease all my adult life (although the last 20 years since I had bowel surgery have been much better). My daughter had her first bout in her early 20s, has suffered flare-ups periodically ever since, and is now in the hospital with a bad flare-up.
today my 14 year old granddaughter asked me: "Grammy, is Crohns' genetic?" I looked at her, saw that she was close to tears, and scared.
I tried to explain it to her. I'm not a medical, or even a science, person. "I don't know how much genetics you've studied in biology, but you may know how genetics work. It's passed down directly. If a parent has a certain trait, there is a one in four chance that the offspring will have it. But Crohns isn't genetic in that sense. It's not passed on the genes. But it seems that people in families seem to be prone to the same illnesses. Some families tend to have diabetes. Some families get heart attacks. And some families have digestive problems, like Crohns." (I hope that was right. That's how I understand it.)
Anyway, realizing her fear, and that there is a possibility that it might run in the family, I agreed with her that she might sometime develop it. She's scared (I guess I said that already.) So I told her that it is something we learn to live with. (Not too comforting when she's seen her mother in pain, in hospital hooked up to machines for over two weeks now.)
Then I told her that there are people living with far worse medical problems and told her of a distant relative who has a genetic defect that will probably cut his life off by the time he reaches 20.
I realized immediately that wasn't the answer she needed. She is worried about the possibility she will develop a horrible disease and I don't think telling her someone else has it worse will comfort and reassure her.
So I backtracked and talked about medical advances, how Mommy is getting drugs and treatment that weren't available to me, but look how well I've been since we found what worked in my case.
But I really didn't know what to say. How should I have handled this? How do I follow-up if it ever comes up in conversation again?
What would you have said?
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somegalfromcan
Posted on: 10/02/2011 17:35
I have no idea how I would respond to this. It seems to me that this is a child who has been through a lot in the last couple of years - watching her mother battle both Crohns and Cancer. She probably has a lot of questions about both of those things and may be unsure about her own future. Seeler, I think you did a good job answering her - you realized what she needed to hear and focussed on that. I'd like to think that I'd be able to accentuate the positive - talk about things like scientists who are dedicating their lives to researching this disease - finding both new medicinal and other ways to control the symptoms (diet, etc). Perhaps you could even talk about things she can do now - such as fundraising for the Crohn's and Collitis foundation.
It seems to me that the most important thing you can do, however, is simply to listen to her fears and provide reassuring hugs.
seeler
Posted on: 10/02/2011 17:49
Thanks somegal, but reassuring hugs would have been difficult when I was driving on the highway. Somehow meaningful conversations often seem to come up in the car - perhaps because there is no TV, computer, other people (except in this case her little brother in the back seat) to distract us. I've had my best talks with my children and now my grandchildren in the car. But not given reassuring hugs. Maybe a squeeze on the arm or knee.
somegalfromcan
Posted on: 10/02/2011 18:29
LOL - yeah you definitely would not want to do that while driving! Perhaps when you get to your destination though!
kaythecurler
Posted on: 10/02/2011 18:32
I think you did an excellent job under the circumstances, seeler. Definitely not an easy topic to deal with.
Worrying about it isn't helpful so I'm glad she was comfortable enough to talk to you. I'd also recommend 'doing something' - like raising research money - as a way of helping (both herself and those suffering). The tough thing is we never know what is in our future. Even when we think we do we don't. I had a neighbor who worried constantly about WHEN her illness was going to get advanced enough to put her in a wheelchair while she waited for her life to end. Long before that day she tripped, fell headlong down a flight of stairs and died of a broken neck.
I'm also wondering if there are any handouts available from reliable sources for the children in her position?
Beloved
Posted on: 10/03/2011 07:48
Wow . . . that must have been difficult seeler! Sounds like you tried to stay upbeat and positive and helpful.
I don't know how I would have responded in the same instance. I do think honesty is important - even if honesty means saying "I don't know . . . "
I wonder if would be worth your while to seek information as to the "genetics" part of it from a doctor/specialist for your grand-daughter. They may have lots of information on how the genetics aspect of this disease that can either give her a window into her possible future or if genetics does not play a part that will dispell some of her fears.
chemgal
Posted on: 10/03/2011 09:30
Seeler, it sounds like you answered her questions well. I would also stress the advances for treatment, including things that can prevent flare-ups.
Regarding the genetic aspect, the two of you could also research it. Some people prefer getting the answer from a doctor, some prefer to feel almost in power and look up the information themselves. I was able to find information fairly quickly (I get satisfaction out of finding reasonable looking information without a huge time investment). Let me know if you want me to share some of it!
revjohn
Posted on: 10/03/2011 14:14
Hi seeler,
What would you have said?
I would have said, "Yes, Crohn's is genetic." I also would have pointed out that genetics isn't always 100% given. Yes it is a given that each and every part of our physical make-up owes to genetics. It is not a given which genes get passed on. So, even though Crohn's is genetic there is no guarantee that Crohn's must afflict every child born to person or persons who suffer from it.
I would have mentioned that I heard about research being done somewhere (Boston I think) that believes Crohn's and other diseases of the bowel might be related to an overly sterile environment (meaning not enough bacteria in the bowel). I'm sketchy on the details. It isn't a part of our genetic roulette so it doesn't track well for me.
If I had a better idea of the specifics of the fear I would do what I could to address them..
Grace and peace to you.
John
Kimmio
Posted on: 10/03/2011 14:45
I might say that Crohn's can be genetic, but it's one of those things we can't predict very well...and even if it does happen, medical treatments get better all the time. I'd say, right now, you're healthy and have nothing to worry about. Let's stay strong for mom, because she needs us. And then give her a hug.