Anyone have an ileostomy?

[daholster]

Hello everyone, I wonder if anyone can share experiences (/just offer sympathy!).

I am 8+6 with my second baby. My daughter was born in April last year so is 16 months old now. I was quite unwell with ulcerative colitis before and then during my pregnancy when it flared and I never really got better after it. I was in hospital about 4 times last year and the final time, at the end of November my body finally gave in, nothing would work and I had an emergency subtotal colectomy (pretty much my whole colon removed) in December, home just in time for Christmas. This means I now have an ileostomy (bag on my belly!)

I am tentatively thrilled for the pregnancy of course, but nervous of what to expect this time, but I figure I'll face blockages etc if they happen, which my obstetrician says are quite common.

But what I currently need help with is morning sickness. It wasn't too bad in my first pregnancy but this week it has really hit me, and I've had to call in sick. My ileostomy outputs much more liquidy stuff than "normal people" because I don't have my colon to help absorb water any more. For the past 2 days my nausea has been much more extreme, I get waves of stomach discomfort which make me want to bend double, and I can hardly eat or drink anything. Drinking is better today but I have a horrid headache and I'm guessing I'm dehydrated. I lose salt and water very quickly of course. Because I'm not eating the gut goes into overdrive and I just lose bag after bag of water, so of course I'm getting dehydrated. I've had 5 glasses of water and Lucozade today and only 1 small wee! I don't think I can take loperamide like I normally would to slow things down, and I know I need to eat. Thankfully I haven't actually been sick yet though could easily retch at times.

So how can I force myself to eat? I've tried ginger biscuits but it's hard going, I really don't fancy them! Does anyone else have an ileostomy and can give me tips or pointers? Any advice would be greatly appreciated, I'm struggling!

Thanks in advance.

Hi! I dont have an ileostomy, but I thought I'd comment since, like you, I have IBD and am pregnant. I have Crohn's though, as opposed to UC.

Can you drink dioralyte? That might help with getting you hydrated again, and making you feel better.

Sorry, I dont have much advice, just wanted to let you know you're not alone dealing with IBD and pregnancy. I'm on humira and azathioprine for my CD, scary dealing with such powerful drugs when pregnant, but I trust my consultant. Can yours help you in anyway?

Hope you have a wonderful pregnancy

Hi Gudgyx! It is scary having IBD, being on meds and being pregnant. Thanks for your comments about dioralyte, I have thought about it, it just tastes so awful! I've got some somewhere though, suppose I could see if it makes me feel worse trying to drink it! Lucozade isn't going down that well, but it is going in!

I was on steroids, mercaptopurine (6MP) and allopurinol while I was pregnant. I pretty much demanded that my daughter had immune system blood tests monitored for the first 3 months... They were all fine and she is perfect. We tried infliximab for me from October, when she was about 6 months old - but it did nothing for me and I had a reaction at the second infusion where the crash team was called! So that was that!!! Unfortunately Humira isn't licensed for UC so didn't get a stab at that one. I wanted you to know that our gastros do know what they are doing, and keeping me as well as possible while I was pregnant with whatever meds that meant was definitely the right thing. It was great that they were sympathetic to my concerns though and let us have her blood tests when she was born (though I did feel guilty!)

I still have a rectal stump that likes to flare, and my stump is stitched to my tummy so sits quite close to my uterus now I think. It worries me when it flares up because I remember how bad the Braxton Hicks got when my UC was flaring last time, so I worry about it stimulating things. And because of how it blows up my stump and feels so uncomfortable when I stick the predsol up my bum I worry about doing that too! At the moment I'm just winging it and hoping it doesn't get too bad...

To be honest I don't think I'll stop worrying until the baby is born. I hope your pregnancy is going well and your hospital are as supportive as you need them to be.

Thanks for your reply!

Can't offer anything but sympathy for what you are going through at the moment as don't have any experience of an ileostomy whilst pregnant,but have a df who had one.

Presumably you have tried the usually advised things to try and thicken up the output like jelly and marshmallows ? Also to try, if at all possible, to eat something when you drink as it will stop the liquid passing through your system quite so quickly.

Probably not much comfort at the moment but df had his ileostomy reversed ( he also had rampant, untreatable UC ) and a pouch created and has not looked back. Really great results.

Are you a member of the Ileostomy Association ? They are great for help and support and may be able to advise you or put you in contact with another ieostomist who may be able to help.

Felicity thank you, brilliant ideas. I've gone off the jelly babies (I tried!) But perhaps marshmallows might be worth a go. I have just discovered Bovril on toast (nice and salty!) so perhaps something like a few strong beef crisps with every drink might help.

I'm not actually part of the IA but perhaps it would be worth a try.

I'm hoping to have a reversal too but the 50% risk to my fertlity meant we wanted to try for a second baby first. I daren't believe it will all work out, sometimes I just want to go day by day but then I'm impatient too! Its so easy to worry!

Thanks again.

Yes the fertility risk is an issue with pouch surgery so you are definitely doing the right thing by completing your family first. Living with an ileostomy certainly brings some challenges but it is good not to have the issues of UC and be on the heavy duty drugs. If you want any info re pouch surgery give me a shout as df went a slightly different route and had it done in a one stage process which was much easier.

Hope all goes well for the rest of your pregnancy and things settle down soon for you.