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My Daughter Might Be Beginning To Flare

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Ulcerative Colitis
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Posted 4/26/2009 4:44 PM (GMT 0)
I know it had to happen even though I hoped she would just never flare, that she would just be in remission for the rest of her life. That the scope was wrong, that she didn't have pancolitis.

She has been in the bathroom three times already this morning - not even really loose stool, just kind of clean out, but two of the visits have had a bit of blood/mucus or just blood.

You know I think she has had IBD all her life. First saw blood at 7 months of age. Doctors always blew me off, even son's ped GI didn't think much of it because she never really had loose stool, just blood and mucus. Her "flares" only lasted a couple of days.

Will I be setting myself up for disappointment to hope that that is all it will be this time?

Could she be outgrowing her medicine dosages? She has been on the same dosages since dx when she was 8. She is now 10 and 5 inches taller, but I can't recall how much weight she has gained, but it is in line with her growth.

She takes 3 750mg Colazal per day and only 12.5mg 6mp. Also iron and culturelle.

What if I think I can't handle this (I only feel safe saying that here because you all understand - I can't say such things "in real life") I know that we will get through this, but I sure hate the strain and sadness it causes. I would like to curl up in the fetal position and just cry, but I have to put on the brave face and pretend that everything is okay! I am thankful that my kids' disease isn't worse, but still, two kid with this just doesn't seem fair!!

I can tell that she is worried, and I'm sure she can tell that we are pretending not to be. This will be her first flare since dx, if it is indeed a flare.

She has had a really cruddy diet the last few days - birthday party on Friday, and we stupidly let her have popcorn both friday and saturday night - could it be the popcorn???

We have a standing order for labs. Would it be wise to wait a few days to see what they look like? Is it too soon for anything to show up there yet?

Even though I have dealt with this nasty disease for 7 years, it does not get easier.

We have an appointment in May, but I will call tomorrow...

Please pray for us!!! And thank you for listening!!

Julie - mom to two with UC
Posted 4/26/2009 4:56 PM (GMT 0)
Julie, your daughter is probably old enough and aware enough that you may want to stop "pretending." Most children like to know they can depend on their parents to be truthful with them, and tend to see "pretending" as lying. Also, starting to include her in small ways in her own health management can help keep her from feeling completely powerless over her own life.

If she knows you are being open and honest with her, it will be easier for her to talk about her own worries and fears. Much as you'd like to protect her, this is her disease and you can't shield her forever.

The science tells us that foods don't cause flares, although they may make the symptoms worse if we're going into a flare. And never letting kids have a treat definitely can lead to rebellion to the point of refusing to comply with any medications or other treatments.

Unless the symptoms get a lot worse fast, I'd just watch for a few days to see how she does. Cut back on her high-fiber foods and be sure she's getting plenty of fluids.

For yourself, what seems to help most moms is to concentrate on the now. Take each day, hour, minute as it comes. Tell yourself "Now I need to do this (whatever task), and I can't fall apart until I finish it. Then go on to the next task. Try to allow yourself some time each day to fall apart and put yourself back together; some moms do this when dad gets home; others take a half hour after the children are in bed just for themselves.

Sending healing thoughts to both of you.
Posted 4/26/2009 7:44 PM (GMT 0)
Hi....suggest she start the cortifoam asap.

Is she able to use the 5ASA enemas such as Salofalk at all?

It's not the popcorn. ... consider the fact that both of your kids have UC.

Is your daughter nearing her period?

I don't know about 6mp dosages, hopefully, the doc will make a decision regarding that...but maybe just adding the rectal meds will help.

It'll take a while to get the flare under control...

Adding probiotics, fibre supplements can help with stool consistency....this should be continued after her flare as well, and the rectal meds to be used as a maintenance instead of only during a flare.

If she's having cramping, dicyclomine, an antispasmodic, might be helpful...

Hope she feels better soon....

Oh, there were probably some symptoms that she may have noticed before these recent symptoms....if she was constipated, it could have been one that indicated some low inflammation in the rectum. But it takes experience to start realising that some changes may indicate a flare approaching.

In saying that, the daily stressors of growing up and functioning in the day to day environment of school, friends and family and hormonal changes can influence UC.

Keep us posted as to how she's doing.
quincy
Posted 4/26/2009 8:48 PM (GMT 0)

Julie,

I'm so sorry that your little girl seems to be starting a flare...I know what you mean about just wanting to curl up into the fetal position sometimes.  My 14 year old was diagnosed about a year ago, and I have felt that way many times.  You are right, it is NOT fair that 2 of your kids are afflicted with this. 

As far as dosages of medication, it seems like I read where the studies with children and Colazal used the dose of either 3/day or 9/day (meaning that one group took 3/day and the second group took 9/day).  My son was initially started on 3/day, but the doctor increased to 5/day when we had no decrease in the bleeding issues on the 3/day.  Did it help my son?  Maybe a little, along with starting Cortifoam, but since then we've switched to 2 Lialda per day and added Canasa suppositiories to the repertoire due to a little bleeding after not having any for a couple of months...  My son has only "not bled" for couple of months total this past whole year.  Despite this, he has always felt pretty well and his labs have been fine.  I have noticed that after parties at school where he has drank soda and ate brownies that he's had more blood a couple of days later.  My son seems to be one who has a chronic low grade "simmer" of a flare. 

You and your kids will be in my thoughts and prayers.  I hope that this is just a little "blip" on the radar for your daughter, and that she gets back to "normal" soon....

Jo 

Post Edited (JoMarie) : 4/26/2009 2:53:29 PM (GMT-6)

Posted 4/26/2009 9:12 PM (GMT 0)
Thanks for the encouragement and ideas!!

As far as rectal meds, the very strange thing with my daughter is that the bulk of her disease is right sided, her rectum and left side of her colon were not very effected at all (or at least not during dx). I think that is why my daughter has never really had diarrhea with her disease and her blood is darker - kind of burgundy.

I will be putting a call into her doctor to see what she suggests and what she thinks of rectal meds.

From what I have read about the 6mp, the dose is usually 1-1.5mg per kg and she takes only 12.5mg and weighs around 29 kg. so that might be worth looking into.

I have doubled her dose of probiotics.

Again, thank you for taking the time to post.

I really HATE this disease!!!!
Posted 4/28/2009 3:06 PM (GMT 0)
If her UC is right-sided, she might do better on Pentasa, Asacol, or Apriso. Colazal has been found to dissolve farther into the colon-- so is considered to be more effective for treating left-sided inflammation. I think Judilynn is giving you wise advice, to start involving your daughter in decisions about food choices now. Some of us UCers definitely do better avoiding things that we know cause irritation down there; it can't hurt to discuss snack & "junk" items with her so that she becomes aware of the need to select/restrict/avoid in accordance with her own physical reactions. That should help her resist peer pressure to binge or scarf down junk as she gets into adolescence. No question that it's tough/sad having to monitor UC in a 10-yr-old, but wonderful that she has grown several inches & maintained adequate weight since diagnosis-- real blessings. / Old Hat (30 yrs with left-sided UC; presently recovering from March flare in sigmoid colon)
Posted 4/28/2009 6:01 PM (GMT 0)
I have no medical advice for you today, as it looks like you are in good hands, and will do what you need to. You seem like a wise and wonderful mom. I just felt your pain, and wanted to tell you to try to take care of yourself too. She needs you to be strong, and as honest as she can handle. I give info out in small doses, so that my own daughter can digest them(clever choice of words, huh?). This disease is so very hard. It gives worry daily, and has such an unpredictable element, that the stress piles on. Hang tough, we are here for you.
Kathy
Posted 4/28/2009 6:48 PM (GMT 0)
I hope I didn't make it sound like my daughter is in the dark about her disease or it's seriousness. She is very aware of all things IBD especially since her brother has had it for most of her life. She knows how bad it can be. She helps fill her own weekly pill container, is very responsible to take her meds on time with very little prodding from us. She prays for the other IBD kids that we know when they are hospitalized or having surgery, so she knows the things that are possible.

Even today she was asking if it was possible that her children could get it from her. She is a trooper for all her labs - which we had today and they were pretty good.

I'm doing much better. For some reason the first day or two of a new flare for either of my children just totally hits me like a ton of bricks. I think the grieving for the time of good health that seems to be coming to an end for however long the flare may last - we've had them as short as 3-4 days to as long as 13-14 months and in a kids lifetime that is a significant chunk of time). The worry over how bad will this flare get - just all the unknowns and even the knowns. Wondering will this time put them in the hospital, or on steroids...? And just seeing them in physical and/or emotional pain and knowing I can't "kiss it and make it better".

She is having some abdominal pain, but haven't seen blood or mucus since Sunday. Stools are formed. I have a call into the doctor and am waiting for her return call. I will ask if her dosages are still correct for her new height and weight and ask if perhaps a different 5asa would be better. So far today is the best day since Sunday. I kept her home from school so she could just rest and take it easy and she is playing quietly on her computer (thank goodness for Webkinz, LOL).

I so appreciate all of the advice. You all mean so much to me and am so sad for all who have to suffer from this disease or watch loved ones suffer.
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