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UC and impending motherhood?

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Ulcerative Colitis
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Posted 3/31/2012 12:08 PM (GMT 0)
Hi everyone,

Haven´t been here for a while. Background: I've had UC for about 10 years, have 3-4 courses of prednisone a year (which works really well on me), and have been taking Lialda for a while. Tried so many different drugs, diets, supplements, etc. ...

I'm expecting twins in about a month, my first babies. I'm starting to get really nervous about how I'm going to handle two infants, and later kids, with this stupid disease! I have urgency even when I'm not flaring, meaning wherever I am, I have to drop everything and run to the restroom, sometimes several times a day. I just can't imagine how I'm going to be able to take them shopping, how I'm going to breastfeed, the logistics seem impossible.

Anyone have any tips for UC with infants to take care of?
Posted 3/31/2012 12:42 PM (GMT 0)
The honest truth?!

You learn how to cope with it!
There are going to be times when you just have to have an accident.
There are going to be times when all 3 of you are sitting in poo, and you just don't know which one you will clean up first tongue
There have been times that I have had to change pooey nappies whilst I have also had a load in my pants.

Or, as I have, you keep the kids in a cot as long as you can, and you put them in there, whilst you go. Kind of a 'dump and run'! But at least you know that when they are in their cots, that they are safe. My 3 year old is still in a cot, as sometimes I have to put him there to keep him out of trouble whilst I go!

Also, your kids will not know that this isn't normal. Because to them - it is! My kids are 4 and 3 year old (exactly 1 year apart, to the day!) and they both know that mummy goes to the toilet and has all day long tummy aches, a lot, and that its 'normal'. My youngest, who is a boy, is starting to realise that when mummy is 'trapped' in the toilet, it is the optimal time to cause the maximum amount of disruption. My 4 year old daughter gives me hugs and kisses, and tells me that I need my hot water bottle for my 'ore ummy', and then she lays down with me, insisting that her tummy hurts too!

Shopping?? - I do everything online, we can even do groceries here in Australia (not sure where you are!), and it all gets delivered, so I do not have to worry about that, but even with 2 babies, a healthy new mother will find it incredibly difficult to get out of the house, let alone a new mother with UC!

Breastfeeding? - Have you invested in a good breast pump? As a lot of my friends with twins found that the best way to breastfeed was to have 1 latched on, and the other side being pumped, then the other baby getting a bottle of breast milk, and then alternating kids and breasts next feed. The task itself is not impossible, but a lot of healthy twin mums do not breast feed, as the task is exhausting, I know just trying to breast feed 1 baby nearly killed me (fatigue wise!), so with the complication of UC as well, you may find that formula/bottlefeeding is the better option for your health, as well as the babies! When I was breastfeeding my son, I was placed on salofalk granules, 4.5g per day, and this was passing through my breastmilk, and causing my son so much pain and discomfort, that I had to stop breastfeeding, as I could not stop the meds. At the end of the day, if you do not breastfeed, it does not make you a bad mother. It makes you a mother that knows her limitations, and knows that her health is just as important as her babies! If not more important!

At the end of it all, the best tip I can give you, is to just take every day as it comes, one day at a time. And when you have a bad day, you have not had a shower, changed out of your pyjamas, or done any house work, its OKAY, because as long as you and the kids are alive, its been a good day!

Hope that helps some!
Posted 3/31/2012 8:14 PM (GMT 0)
The first message was a great reply. It helped me having swings, playpens,bouncers near the bathroom(they are usually happier if they can see you even if u are on the pot). Sometimes we are there longer or need to be and don't want or need to be worrying about safety. I only had one child at a time, so twins wow! And i so agree that whatever your child sees is their normal. I would also have several diaper stations, diapers, wipes,ointment, a snack bar, couple of blankets and onsies in several locations, just a box to keep you from running around when you are low energy. Grab a water before you sit down to breastfeed, i always got sooo thirsty, and sometimes a snack to double duty.I loved Larabar snack bars, Leda nutrition apricot bar, Bumble Bar Original with cashew, all gluten free and high fiber.Cutting down on things that make u gassy will help them not to be gassy or fussy, or risk big spit ups, that always used to scare me, the pediatrician wasn't, but then they are not fed and fussy and in need of a bath. Sometimes our hormones play a big role in our disease as does our stress. I had very tough pregnancies, but my hormones helped me out, or maybe just the joy of a wonderful new life, when my babies were finally here. Good luck and congratulations!
Posted 3/31/2012 8:21 PM (GMT 0)
What meds are you on?

What supplements are you taking?

I don't have kids, personal choice. I think you really need to have your med and supplement regimen in order firstly.

I would suggest you take it a day at a time and you will eventually fall into the rhythm.

I hope your husband is onboard with wanting to be "present" and "involved".
I also hope you have a LOT of support from family and friends to help so that you have a bit of alone time/recovery time/date time...etc.

Are you having natural birth or c-section? All will play into what you're able to do afterward.

Hope all goes well with the delivery..
q
Posted 3/31/2012 9:25 PM (GMT 0)
Totally agree with the first post. I had my daughter 4 1/2 years ago and was diagnosed with UC when she was almost 1 1/2 but had symptoms for probably a year prior to diagnosis. The bouncy seat and the swing were very convenient. I luckily had a little half bath that was connected to my living room and when she was crawling or toddling around I just left the door open. She never knew any different and now that she is older when I just say I have to go potty its nothing new to her. Of course this is when she tends to get into something because I live in a different house and keep the door closed. You will figure it out. And my best advice is take all offers of help. Don't try to do everything yourself.
Posted 3/31/2012 10:33 PM (GMT 0)

ge0rge said...
, because as long as you and the kids are alive, its been a good day!

Hope that helps some!

So just breathing is a good day to you?

How low have we sank and accepted this disease.

A good day is being totally healthy with no symptoms to speak off, imo.
Posted 3/31/2012 11:27 PM (GMT 0)

Somedude said...

ge0rge said...
, because as long as you and the kids are alive, its been a good day!

Hope that helps some!

So just breathing is a good day to you?

How low have we sank and accepted this disease.

A good day is being totally healthy with no symptoms to speak off, imo.

Somedude - Even being healthy and having new born babies, just for everyone to be alive at the end of the day is a good day! There is so much other stuff to deal with - post natal depression is one big factor.

But what am I saying - you must not have children!? Because unless you do, you really and truly would not understand the responsibility, or the amount of work involved with babies. Your life is no longer your own for about the first 6 months - and that is just with 1 baby - with 2, you are going to need help AND lots of it! add in UC, and if you are flaring, it can be absolute hell.

So yes - at the end of the day, as long as the head count equals what you started with - its been a very very good day!
Posted 4/1/2012 2:52 AM (GMT 0)
I decided to start Imuran after my son (second child) was born because I could not accept that it was okay to have constant urgency and symptoms with two children. I just decided I had to try everything to be "normal" and healthy for my children. So when I was pregnant with my second and facing the potential of having a new born and a 4 year old and dealing with constant symptoms I changed GI's and found one who was willing to try to get me to a full and true remission so that I could totally focus on my kids. I started Imuran when my son was two months old and it worked. So I did not have to deal with all the flare symptoms.

I am so thankful that Imuran has continued to work for me so that I don't have to deal with all that junk while also having two young children. I used to HATE having to run to the bathroom with my daughter when she was a baby. She would just play in the bathroom while mom sat on the potty over and over but it made me feel so bad that she thought that was normal.
Posted 4/1/2012 4:02 PM (GMT 0)
While I was pregnant I was in remission, but as soon as he was born I went right back into full on uc. At first it wasn't that hard, they can't go anywhere, just out them in the swing or whatever and go. It got much harder when he got mobile. I put a bouncy seat in the bathroom, and I never strapped him in anything in the house, that way we could get to the bathroom quick. When he was in a carseat carrier we went shopping, after that I didn't go. Couldn't risk it.
When he got older I put crayons in the bathroom and he drew on the shower walls. When I missed his first trip on the beach when he could walk around I chose surgery and had it a year later. During that year he colored on the shower a lot! I've left it there, it reminds me why I had surgery.
Having a baby is so hard, and so scary. And yes if you make it to the end of the day and everyone is still breathing, its a good day. I still sometimes just watch him sleep, just to make sure.
Good luck!
Posted 4/3/2012 12:45 AM (GMT 0)
Thanks everyone! Some good tips here. Guess I need to make an appt with my GI soon and perhaps even see if I can get a short pred dose. My pregnancy has been basically perfect until now, but I'm really starting to feel it at this point, and my bowels are not cooperating. Which is why I have been having nightmares about how I'm going to be able to drop everything and get to the toilet in time with my two girls so little and helpless. One day at a time.. :) thanks again
Posted 4/3/2012 4:54 AM (GMT 0)
I am surprised you're GI is still ok with giving you prednisone after you have been on it for 10 years. Have they suggested you try other meds or surgery?
Posted 4/3/2012 11:34 AM (GMT 0)
If you are on any medicines which can cause easy bleeding, like 6mp, immuran, asacol there may be more I just know those cause I was on thrm, you should ask your ob or gi if they suggest a vitamin K (I think that's the right one) shot before you deliver to help with clotting. When I had my son I was on immuran and asacol and another nonrelated med which also causes easy bleeding and on of my drs suggested that to me. I think I had the shot a week before my due date, and then one that day.
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