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Taking care of kids and having UC

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Posted 1/5/2010 7:54 PM (GMT 0)
My daughter is now 10 months old and it's been a learning experience having a little one and having UC.

When I have to spend a significant amount of time in the bathroom some mornings, I have resorted to setting her on the rug in my bathroom and letting her play with my make up bag, shampoo bottles, whatever, or bring a few toys in with us.  What do you other mom's (or dad's) do when you have small children and have to spend frequent or long amounts of time in the bathroom? 

I guess my method works for now.  What to do as she gets older?  How do you explain it to your children at different ages?     

Posted 1/5/2010 8:27 PM (GMT 0)
Well, it's been so long, they grow up so fast, but I do remember potty training them both (one girl and one boy) was super easy, since they often saw mommy on the toilet. For the most part I'd be in and out of the can fairly quickly, sometimes I'd be in there longer but I found that having them in their playpen was helpful when I had to make trips to the can and wanted them safe.

:)
Posted 1/5/2010 9:18 PM (GMT 0)
I am lucky enough to have a "play room" with a gate that slides across.
It's the only way I can run to the bathroom & know they can't get into
something dangerous since that room is tailored for my little peeps right now!
Do you have a place in the house where u can baby proof or pick up all the stuff
she could get hurt on? Maybe add a gate...if you dont already have one. They range
in price but do have some really good ones cheap! It's going to be hard to keep her
confined in the bathroom once shes mobile & you DONT need the added stress of trying
to control her while you cant even control you! Good Luck
Posted 1/5/2010 9:30 PM (GMT 0)
My kids are 3 and 4.5 now, so they are old enough to entertain themselves if I need to be in the bathroom (though they always NEED me all of a sudden when I have to go-of course), so it isn't too bad right now. Now I get comments from them about the sounds I make in the bathroom at times, but it is a good opportunity for us to talk about manners and what is appropriate to say and what isn't. They are almost always in the bathroom with me, which is easier than closing the door and listening to them bang on it.

When i was in the midst of my worst flare, they were 18 months and going on 3 and that was much tougher. I put a gate on whatever floor we were on so they couldn't go up or down, kept the door open and would either turn on the TV if I had the chance, or make sure they were set up with some toys and a snack. Mornings were always hardest for me, so I made sure they were busy then. I used my older one as watchdog, and when all else failed, I made the younger one stay in the bathroom with me with the door closed (she was the one I was worried about-she was at that self-destructive discovery age). It was very stressful. When it got to the point that I had no energy and really couldn't care for them, my mom started coming over most days. I am very grateful for that.

My kids see me take a LOT of pills, and they talk about how they will do that when they grow up to be a mommy. I have tried to explain to them that I have something wrong with me and have to take these pills to keep me from getting sick, and that they won't have to do that when they grow up. I also explain to them that the medicines I use help me, and they don't have to worry about me not being around to take care of them (it was very stressful for them when I was hospitalized-they were very very clingy for a while after that). They don't know the name of what I have, but they know that sometimes mommy has to use the bathroom more than other people do, and that I have to take a lot of medicine. And now they are learning that it isn't nice to make inappropriate comments when someone passes a lot of gas on the potty, lol. (I actually find them to be high-larious, but I would HATE if they said some of the things they say to me in front of strangers, so I keep my poker face on)

It isn't easy. I don't have as much energy as I want to, and I don't do a lot of things I wish I could with them. But we are all learning, and I think they are becoming more tolerant as a result.
Posted 1/5/2010 9:37 PM (GMT 0)
Laura has a great point...do you have a good support system??
Anyone close by that can help? Without my mother in law (lives around the corner)
this would be alot worse for me. This Flare which I am slowly coming out of was the
worst yet. There were a few days when my husband was working & I just had to lay down
so she came over & let me sleep.Even a neighbor you trust would work. I learned how
to accept help after my twins were born (since I am really not super-mom, LOL!) & you
better believe now they know about the colitis also & they have been so helpful.
Posted 1/5/2010 11:33 PM (GMT 0)
I would have to agreed with support system. It is the only way you will manage if you are in a really bad flare.
I am just starting one now, and I am trying to get through it without going back on the pred. It started on Sunday am, and it got gradually worse. I finally gave in today and called my mother and asked for help. This for me is so hard, as until I got this disease I was a bit of a control freak and would never ask for help.
One thing this disease has though me is you need to ask for help.

I have an 18 month old and a 2.5 year old, so this makes thing very hard for me, but I find the best way to deal with it is to leave the door open and let them come in. I tend to try and keep them to the living room or the kitchen, depending on the time of the day, so if I have to run to the bathroom then they only have access to the hall toilet and one other room. All other doors are locked, and I try to ensure that all dangers are out of their reach.

It's not easy, but it is working at the moment. Don't know what I will do when my eldest works out how to open the locks.

HTH
Posted 1/5/2010 11:40 PM (GMT 0)
I was diagnosed with UC after my son was born, so I can sympathize on taking care of a newborn while flaring...it sucks! Luckily, I've been in remission since he's been mobile, which is a very good thing. When I was flaring, I kept a towel in the bathroom that I could throw on the floor and place him on when I had to go. He didn't seem to mind too much!! ;) I'm not sure what I'd do now that he's walking everywhere...probably keep a pack-n-play set up and stocked with toys in the living room to stick him in (you can see the living room from the guest bathroom) when I have to go.

The issue of needing help is partly why my husband and I are looking to move back closer to family...right now we live in WA and they all live in MI and IN. Much too far away to really help out! At least if we're withing driving distance, my mom would just come and stay with us while I'm really sick.
Posted 1/6/2010 3:20 AM (GMT 0)
This is a great thread. For me, taking care of kids while flaring is the hardest part of having UC. It's hard enough to take care of yourself, much less others. My kids are 10, 7 and 3. I've told the older ones before that I have a colon disease but I don't think they really get it. Their still at the age where they are preoccupied with their own worlds. I imagine when they get older they may ask a few questions. I'm still waiting for the day one of them digs an enema bottle out of trash and says "What's this mom?"

Since the mornings are rough for me and I'm often in our downstairs bathroom when the kids are getting ready for school I've gotten pretty good at yelling out instructions like "Get your coat on" through the door, so the kids don't miss the bus. My newest challenge is trying to figure out what to do with my 10-year-old son when I'm out and have to go to the bathroom. Sometimes I'm in there for five minutes or so and I don't always know what to do with him. Fortunately this doesn't happen often.

Posted 1/6/2010 12:58 PM (GMT 0)
Hi, I have 3 kids as well...7,4,and 2.  The two older ones can of course be fine on their own and the 2 year old is getting better.  But when I started with symptoms my youngest was barely over a year.  I used to put her...and sometimes still do depending what's going on...in one of those exersaucers.  They are great...you can move them around easily and just pop them in there, well, they'd have to be willing of course, you wouldn't have time to fight with them if you needed to GO RIGHT NOW!  lol.  If that's not an option, I'd go for the smaller playpen with toys in. 

I'm funny about I don't let my kids in the bathroom with me.  It's just me but I'm not comfortable with that.  Plus the older ones are older and they don't need to be in there with me anyway.

It is hard sometimes when I've got to take 3 kids out in the morning to school and preschool then bring the youngest back here with me...it's alot to do when you really just wanna sit on the pot!

Hang in there!

Posted 1/6/2010 1:42 PM (GMT 0)
I had my son pre-Uc and my daughter with Uc. So I got the view of both worlds. My son is 4 years older then my daughter so when I had her, I had him sort of keep any eye on her while I had to do the bathroom dashes. But there was a time when my son started school and I had my then 1 year old daughter in addition to a friends 1 year old son to watch after. It was NOT easy. There were plenty of times that I had to take my kids in the bathroom with me and if I couldn't then they went into a playpen or the "safe room". I never really spent much time in the bathroom so it was usually a quick in and out. But it was rough because while in the bathroom you can't help but wonder, what are the kids getting into??? Luckily I had a small house with a straight lay out, so I could leave the bathroom door open and just peek out the door at them to watch them.

Of course there were quite a few funny stories about not being able to watch them ALLLLL the time. They were never able to get into stuff that would seriously harm them because I had it all locked or set up high, but there was this one time that my son and my bf's son (who were 2 at the time) got into my powder cover up. They came out of my room looking like that cartoon kitten that got into the flour - all you could see were their eyes! :)
Posted 1/6/2010 2:06 PM (GMT 0)
Both of my kids were born after my DX..... they are now 20 and 16 - so, however we did it, they survived!
I am usually a quick one in and out of the bathroom, and i just left the door open. I was careful to just explain to them that Mommy had a condition that made her use the bathroom a lot. And no matter how discouraged I was feeling, I didn't put on a pity party in front of them; I was just matter-of-fact about it.
Although time has probably erased some of the difficult moments, the worst times for me were the annual colonoscopies - prep day with young kids was difficult. I became aware of how unthinkingly I would take a bite of whatever I was feeding them! and fixing their dinner while starting the prep....
When they got a little older I would take them out for fast food - just pick it up and take it home for them to eat - just before starting my prep.
Posted 1/6/2010 2:51 PM (GMT 0)
Great advice thank you. My biggest dilemma is early mornings when I am flaring. It's when I'm on the toilet the most. My husband is usually still sleeping due to our schedules. My daughter has some clingy moments where if she can't see me she'll cry and I'm trying to be considerate and let him sleep. Maybe I just need to get over that! I definitely have guilt issues about asking my husband for help. I got UC after we were married. He's never made me feel this way, but I find myself feeling bad that he got "stuck" with UC too. And to his fault, I do believe he uses my UC as an excuse for not getting things done on his to do list when I know I wore myself ragged just so he wouldn't be burdened more than usual.

At her age now, she has no idea what's going on. While I'm sitting there I think about how to explain it to her as she gets older, and you all explained it similarly to how I imagined doing so. I also don't want to make it a pity party but rather just something mommy has to deal with.

We only have one female family member in the area about an hour away. At this young age the male family members aren't too keen on helping yet. She comes over one night a week to give me a break which is great. I'm starting to interview babysitters closer by so I can have more help if and when needed. 2009 was a rough year for me with UC so I'm trying to start 2010 optimistically that it can and will be a better year!
Posted 1/6/2010 3:31 PM (GMT 0)
JM21204- have you tried your local chapter of Chron's & Colitis foundation to see if they can assist with babysitting references? Maybe??
Posted 1/6/2010 3:51 PM (GMT 0)

No I had never thought of that.  I do belong to the local chapter though - great idea.

mom2threehasU/C said...
JM21204- have you tried your local chapter of Chron's & Colitis foundation to see if they can assist with babysitting references? Maybe??

Posted 1/6/2010 4:31 PM (GMT 0)
Great thread. My biggest fear is what to do with kids - at home & (especially) in a store if I were having a flare. We don't have kids yet but your suggestions are definitely great for future reference.
Posted 1/6/2010 4:40 PM (GMT 0)
I was diagnosed with UC pretty much right after childbirth... my daughter has grown up in a bathroom! When she was an infant, I'd take her in to the bathroom with me. If I knew she was occupied (tv, etc- we lived in a one-story house), I'd dash to the bathroom, leave the door open & talk to her while I was in there. So she could get to me if she had too. I always kept the front door locked, so when she was able to stand up, walk around, etc. she wouldn't fall out if she stood there looking out the screened part. I don't know... you do what you have to do- when we're in stores, even now, we drop our items & run to the bathroom if I have to. I've pulled over my car countless times to hop out & squat on the roadside. She's grown up with me having issues, accidents, etc. She's now 7, & is so understanding & empathetic. She knows "Mommy can't help it", & if we are late to a birthday party due to an emergency stop, she's ok with that. It doesn't happen as much anymore, but I think it's because I've become better prepared- carrying my extra undies & pants in the car, etc. I spent the better part of 2 summers in bed, or just sitting on our deck- couldn't even walk around the backyard with her, we didn't go to the beach, etc. She made the best of it. When I've been too ill to do much, my sister & my Mom have helped out. And my husband! It's tough, but in some ways, you can use it as a good lesson for your kids to learn- to be understanding of illness, discomfort, etc.
Posted 1/6/2010 7:24 PM (GMT 0)
Out in public I took my kids into the bathroom with me and had my daughter (the oldest) watch over my son...never even thought to call my mom or MIL to come and watch kids for me while I was at home not feeling well, I just managed but it was always nice when hubby finally got home after work and took over with playing with them and stuff.

:)
Posted 1/6/2010 8:04 PM (GMT 0)
While we are talking so freely about our this, I have to share...
When I became pregnant the 2nd time & was told at 5 weeks we were going to have 2 babies
I was so elated on cloud 9++++! After they came I had a few periods where I thought to myself
"there is a reason" we were chosen to have 2. Having 1 not easy, having 2 same time,
really not easy (god help the mom's of trips & above!) Anyway through out this current Flare I am
in which by far has been the worst ever, there were a few days where I would ask the question
"why give me these 2 beautiful boys" if I were gonna have to battle this horrible disease. Sometimes
with tears b/c I was just so tired to even pick them up when they would cry or even just to change a diaper
become such a chore for me. Well, happy to report, we are all alive and well (for now) over here. All 3 of
my beautiful kids know how much I love them & they always will. When in remission I am going to do
everything I can to be the best mommy I can be. When not in remission, I will still do everything I can to be the best mommy
I can be :) Enough said sorry to go on so long but you have to give yourself some credit...afterall you were chosen!
Posted 1/6/2010 9:20 PM (GMT 0)

Well said.  Kudos to you for keeping it together with 3 little ones!  I love my daughter and can't imagine life without her, but there are the really bad days and even moments where I wonder if having a child was selfish of me as I'm not always as attentive as I need to be.  I know I'm a good mother though and if having UC is the most "damage" I do to her, she will be fine.  My husband jokes that they way technology is going maybe her cord blood can grow me a new colon some day LOL.  

mom2threehasU/C said...
While we are talking so freely about our this, I have to share...
When I became pregnant the 2nd time & was told at 5 weeks we were going to have 2 babies
I was so elated on cloud 9++++! After they came I had a few periods where I thought to myself
"there is a reason" we were chosen to have 2. Having 1 not easy, having 2 same time,
really not easy (god help the mom's of trips & above!) Anyway through out this current Flare I am
in which by far has been the worst ever, there were a few days where I would ask the question
"why give me these 2 beautiful boys" if I were gonna have to battle this horrible disease. Sometimes
with tears b/c I was just so tired to even pick them up when they would cry or even just to change a diaper
become such a chore for me. Well, happy to report, we are all alive and well (for now) over here. All 3 of
my beautiful kids know how much I love them & they always will. When in remission I am going to do
everything I can to be the best mommy I can be. When not in remission, I will still do everything I can to be the best mommy
I can be :) Enough said sorry to go on so long but you have to give yourself some credit...afterall you were chosen!

Posted 1/6/2010 9:55 PM (GMT 0)
Too funny, I just had that thought myself today as a matter of fact...maybe someday is right!
Posted 1/6/2010 10:33 PM (GMT 0)
Some words of advice from an "older" mom. Be up front and tell your children what you have as soon as they can understand what Uc is. I made that mistake with my daughter. I tried to hide the truth from her because I thought it would scare her but it ended up doing the opposite. She got scared because of what I WASN'T telling her. She became terrified that I would die on her and I had some major emotional issues with her. I had her in therapy for these issues and it was then that I found out how much it scared her. She honestly thought I was dying and now that she is reassured that I am going to be around a very long time making her life *hades*, she feels much better! :) Btw, she is 14 now and my son is 18.
Posted 1/7/2010 1:11 AM (GMT 0)
i had uc when my son was born, and didnt have surgery until he was almost 2 so i had those first two years to deal with it, and he was a wild a kid, lol.
At first, i would just take his little chair in there and sit him in it while i used the bathroom, then he got too old for that, so i took his play thing that he could sit up in and bounce and he played in it. then for a little while i could leave him in his crib, but then he could climb out of that. So from about 1 until i had surgery, i took him in the bathroom, locked the door and gave him those crayons that you can color on the shower wall with and he did that. And then i filled a drawer in the bathroom with toys and he played with those, and i locked all the other drawers wtih those kid proof things. he never seemed to mind. i was lucky though that the majority of my family is within a mile, and my parents are walking distance so it was easy for me to get someone over.
the crayon thing worked really well, although i will say those dont come off as easy as they say! I scrubbed and scrubbed on that stuff, lol. And its still there! But im kind of glad now, becasue when i see it it reminds me of why i had surgery.
Another thing i did was buy one of those pens for the yard, and set it up and filled it with toys, that way he could play in there, it was likea really big playpen.
Posted 1/7/2010 3:10 AM (GMT 0)
JM21204, I wanted to touch on what you said about having guilt issues with your husband. I do completely understand wanting to let him sleep, not wanting him to be burdened, not wanting him to see what is going on, but he is your husband and partner, and I'm sure as such, he WANTS to be there to help you. We get married and most say the traditional vows, in SICKNESS and in health. Our burdens as married couples are shared burdens, and that is a blessing. It means we don't have to do this thing alone. And I'm sure he doesn't want you too.

How would you feel if the situation were reversed and he was the one with the disease? Would you want him to try and shield you from it, or would you want him to let you in and help him however you can?

These things ebb and flow, you know? There are times in our marriage where I need him more than he needs me, and there are times when he needs me more than I need him (from a perspective of burdens or issues-we always need each other), and sometimes we are on pretty equal footing. But regardless, we do and more importantly, we WANT to be here to step up for each other during our times of need. When i was in my worst flare, there was no argument, no questions asked; when he came home from work, my mom went home and he took over. He had just walked in the door and the last thing he really *wanted* to do was be the home provider as well, but he did it plus took care of me as best he could.

Try not to feel guilty. You are in this together, and I'm sure he feels that way too. You are partners, and you are both parents as well-you will have a chance to let him lean on you more when you are back to full strength. You need to lean on him now.

Good luck-anyway you slice it, it certainly isn't easy!
Posted 1/7/2010 2:01 PM (GMT 0)
Yes I know you're right.  It's hard for me to ask for help, but I definitely need to get over that, especially with this disease. 

Supa said...
JM21204, I wanted to touch on what you said about having guilt issues with your husband. I do completely understand wanting to let him sleep, not wanting him to be burdened, not wanting him to see what is going on, but he is your husband and partner, and I'm sure as such, he WANTS to be there to help you. We get married and most say the traditional vows, in SICKNESS and in health. Our burdens as married couples are shared burdens, and that is a blessing. It means we don't have to do this thing alone. And I'm sure he doesn't want you too.

How would you feel if the situation were reversed and he was the one with the disease? Would you want him to try and shield you from it, or would you want him to let you in and help him however you can?

These things ebb and flow, you know? There are times in our marriage where I need him more than he needs me, and there are times when he needs me more than I need him (from a perspective of burdens or issues-we always need each other), and sometimes we are on pretty equal footing. But regardless, we do and more importantly, we WANT to be here to step up for each other during our times of need. When i was in my worst flare, there was no argument, no questions asked; when he came home from work, my mom went home and he took over. He had just walked in the door and the last thing he really *wanted* to do was be the home provider as well, but he did it plus took care of me as best he could.

Try not to feel guilty. You are in this together, and I'm sure he feels that way too. You are partners, and you are both parents as well-you will have a chance to let him lean on you more when you are back to full strength. You need to lean on him now.

Good luck-anyway you slice it, it certainly isn't easy!

Posted 1/7/2010 2:37 PM (GMT 0)
JM, my guess is that - here you are, new mom and all, and you have expectation of yourself, an image of the way you always thought it should look like - and UC is getting in the way of that.

So instead of being the smiling Supermom, you need some help - and, right, my husband works long hours, too, so I hate to burden him with things I would rather be "my" jobs - but, you need to fast-forward from the image you had envisioned and look at what's really happening.

I have long thought that "in sickness and in health" is likely the most difficult phrase in the wedding vows.

And so when my kids were little I was where you are now....... but then, to put it into perspective, a few years ago my husband tore the cornea in one of his eyes, and an infection developed quickly; our local eye doc told me he was within an hour of losing his vision. With no warning - he woke up one morning and this had happened - I had to drive him halfway across the state to a cornea specialist EVERY DAY for a month for an eye check. Also, he needed to me to put drops in his eyes .... four kinds of drops, some every hour, some every 2 hours, some 4 times a day and others twice a day. (I made up a chart.) So - not that I ever, EVER wish something like this on you, but - yes, we with UC can also "be there" for our significant others when they need us!

Good luck. It's a lot to juggle. The way I see it is that I was put on a fast track to figure out a whole lot of things that most people have decades to learn!
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