parents of children with UC

My young daughter was diagnosed with UC four months ago (pancolitis). Obviously, we are scared and very worried and trying to get on top of this thing as much as we can. For any parents with children with UC, how did you cope with the stress? How did your children cope with growing up with this disease? Any helpful tips/treatments (I know, everyone is different but it's helpful to hear what works), anything to avoid?

My younger son was diagnosed when he was 13 years old. He'd been "off" for a few months, complaining of stomachache (I thought he might be suffering school avoidance) when, finally one day we were out for lunch and he dashed to the restroom after eating, and came back told me how he'd been doing that..... and I asked the question,"Has there been blood?" and - I KNEW.

It took a few weeks to get him into a pediatric gastro and be scoped and get the DX.

I felt as if I'd been hit by a truck, and of course there was the added issue of "he got it from me...." I so remember those days as days of grief - I'd wake and have those blissful 10 seconds before the New Reality hit me... Really, I do feel for you.

Prednisone and Asacol for him (pancolitis). He was in too bad shape to try asacol and wait to see if it would work. He was off the pred within 3 months, still takes asacol (we buy by the boxload.)

Knock on wood or whatever, he remains in remission 2 1/2 years later.

When he was flaring, I explained my own "no scratchy, no greasy/fried, no spicy/acidy, no gassy..." and he'd seen me eat that way plenty of times, so he mostly accepted that from me. He experimented and realized, through his own discomfort, that he had to give up Mexican-type foods, hot sauces, subs with a gazillion vegetables, pizza.... for a while.

Going on outings was tricky but.... a little easier for us than for many, since I already knew where ALL the restrooms (and all the shortcuts to get to them) in all the stores, malls, etc were located! (A bit of grim humor there!)

Now he eats whatever he wants (unfortunately). The typical teenager. I am so grateful.

Harder with a younger child! I feel for you. With my son I was able to explain that many people in the world have food limitations, whether it is allergy-related (schoolmates and peanuts) or whether friends keep Kosher, observe Halal....and that, unfortunately, UC was his lot in life.

At that point he was interested in being a chef when he grew up, so the months he was out of school he experimented and made us interesting meals many days, with what we deemed were "safe" foods for him.

He played video games and computer games online with other kids (I learned later that a local kids' cancer support group has kids that play together online, each from their own homes.) It sure lessened the isolation for him!

Interestingly, my own UC did not flare during that time. My own GI was amazing - checked on me, gave me his cell number and told me to call him every 2 days, weekends, whatever.

His pedi GI sometimes has support group flyers posted.... but we didn't go to one, for whatever reason. At the time of his DX, I was giving music lessons to the child of a pedi oncolocy social worker, and we did have a few good conversations.

Hopes this helps some. And I hope some of the others on HW tell you their stories.

RJD, Darwin was apparently a sick man all his (adult at least) life who managed to live into his eighties (I think) and have ten children, so I guess he knew what he was talking about. Thanks for the tip, I'm thinking about therapy. Fruitgirl, thanks, I do read that site, it's quite helpful but frightening because some of those children have extremely severe disease and it's almost debilitating for me, I avoid it sometimes. Songlady, I'm so happy to hear your son is doing well. I know the "he got it from me" feeling, my brother has UC (so it may be my side of the family if not me, though I'm convinced I will be diagnosed with IBD in the future), but for me it's "what didn't I do" "what did I do wrong" (I should have let her eat dirt etc etc.. I am actually too clean). Your son is probably doing so well because of you -you knew about diet, what would help etc. How severe is his disease if you don't mind me asking?

Killc, my son has it throughout his colon - pancolitis - and it was very severe at diagnosis. Now he's fine: hre goes once a day usually, eats anything, stays up too late, plays Frisbee... but mostly he's into music: he plays trumpet in 4 bands at school and sings in the chamber choir. He did a gig at a Christmas program yesterday....and he's always telling me to calm down, take things easier!

He has a lot of empathy and is the designated "go to" person for his teen friends with their various issues. If anything the disease has made him a deeper person. Though, like JoM's son, he doesn't talk about it much. The big question will be how he handles the next flare - but every day he's a little older and that will help.

This is a tough disease-it doesn't resolve with a magic potion. We are all kept guessing-what will heal, what side affects we're instigating, what doc is on top of it...?That is why we lurk here and get support when we need it. My daughter had a really tough year and one half-four times in the hospital, lots of face ruining meds, scary weight loss, nightmarish expenses...but we are in a good place now. Remission, and the living is easy :)
Stay healthy yourself, don't let them see you fall apart, give realistic info, but stay hopeful. I held a little too much tension, and now see a chiropractor, but I'm still hangin' on! The 504 was a great suggestion for school-it gives a permanent bathroom pass!
Best of luck,

My young daughter, age 9 was just diagnosed in Oct. I was so depressed and miserable for such a long time. She was on Pentasa for 6 weeks and it did not help her at all. She is now on Prednisone and is doing great. We will start weaning her and then start Sulfasalizine in about a week.
I thought life would never return to normal but it has, for now!
I also had to start an anti-depressant to help me deal with life. I was so sad and depressed and wanted to cry all day long. I did for a few days but I have another child to care for and a husband so need to function. I am worried sick about the future but try to take it one day at a time.
How old is your daughter? What meds is she on? I would love to keep in touch. I know about over doing the research as well- not a good thing. It made me crazy and I should not even be on this site- but sometimes I just need to scan a bit.
Hope your daughter is doing well.

I would love to e-mail you off the boards but don't see your e-mail- can you post it for me?

Can you post it in your profile and then delete it as soon as I get it?

Post Edited (IBDISTHEPITS) : 12/17/2009 10:07:20 AM (GMT-7)

Okay, I've updated my profile, you can email me.

Did you get my e-mail that I sent you?

I used the e-mail in your profile- is it correct? Did you check your junk mail?

sent again :)

Killc, I was so pleased to read of your breakthrough in thinking - it sounds as if you have been taking in and integrating a while lot of info and emotions and are coming out in a constructive place.

I have always had a keen interest in what we called in the 70's 'health food" and natural healing.... but, I think because of my own experience I had a headstart on a lot of those issues, so when my kid was diagnosed, my thought was - "bring on the meds, get him out of this crisis and feeling better asap! - and later we'll deal with complementary and natural methods."

You've been in my thoughts - please let us know how she's doing.