Anyone suffer from ulcerative colitis???

Hi everyone
Just thought I'd post this as I do and have for several years.
I'm having a flare up (unusual through pregnancy apparently) even though I was advised to stay on my meds. Be interested to know if anyone has gone through this while pregnant or is going through it as it's getting me a bit down now and looking for support.

Thanks

Em x

Posts

  • Oh how awful, I am so sorry to hear that, it is disgusting the way he was treated. I hope it all works out for you and your family and my thoughts are with you, it must still feel very raw especially as it's all still ongoing. It's awful how these things take so long to be dealt with, I hope it doesn't take much longer for you.

    I have been quite lucky and had and am still having very good treatment, mine was diagnosed about 10 years ago when I was so bad I had to stay in hospital for 5 weeks but lucky they have managed to keep it under control over trhe last 4 years with azathioprine, quite controversial in pregnancy, something you should never start to take whilst becoming pregnant but better to stay on if you've been on it for years apparently.

    It's unusual as it's my first flare up since being on this drug and I'm back on steroids at moment which are meant to be fine to take whilst pregnant too in moderation, so we'll see how it goes.

    Thanks for the link will have a look at that.

    Em x
  • Hiya, this is a really late response but I was just looking through all the posts in the pregnancy section and saw this.

    I've had UC for 7 years now and was in remission for 2 years prior to being pregnant. Strangely enough I went straight into another attack as soon as I discovered the pregnancy and have been struggling a bit since.

    Am still waiting to see my gastro (been waiting for 6 weeks now) to find out what can be done to help. My GP has advised me to continue taking my meds etc. Am losing a lot of blood every day and have been struggling with agonising cramps which are a big part of UC for me. The high risk pregnancy consultant I saw said that UC is unlikely to affect the baby, the worst outcome is an underweight baby which put my mind at rest.

    Still it's hard to cope with when you also have the preg symptoms to deal with too!

    Sorry for the long post just amazed there is someone else out there with UC - haven't ever met anyone else with it!
  • I have Crohn's disease which is very similar to Ulcerative Colitis. I was diagnosed in 2001. I've been lucky in that my condition has been in remission for the past four years with only the occasional mild bout of bloating but no bleeding. I was advised to stay on my medication (mesalazine and 6-MP - which is very similar to azathiaprine) but I stopped taking the 6-MP 8 weeks into my pregnancy as I read some really bad stuff on the effects on an unborn baby. So far (touch wood) I've suffered no side effects of coming off 6MP so I'm glad I stopped taking it. Mesalazine is said to be safe in pregnancy so I've carried on taking this. I've heard it's very unsual to suffer a flare-up during pregnancy so it's a real bummer for anyone who's suffering. I have heard however that due to a drop in hormones a flare-up can occur in the weeks following the birth!

    Hope anyone suffering at the moment feels much better very soon. It can't be nice to have this to deal with whilst being pregnant.

    Serena xxxx

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  • Hi emmum2b,
    I was diagnosed with UC 2 days after i got back from honeymoon in January 2007, i was devasted at first as i thought it was all down to stress with the wedding and we wanted to start a family straight away. The hospital advised me to wait until i was in remission which i did, it took a few months but then i found out in July that i was. My UC Consultant told me to come off medication straight away (i know my meds were safe to take during pregnancy because nacc told me) Anyway i came off and continued taking pregnacare and still am (for the nutrients), I have had a few bleeds (Bowel) on and off but when i phoned my support nurse she said to keep an eye on them and if they get worse then to ring them but they are hit and miss and not too bad. The hospital have been great with regards to giving me growth scans to make sure baby is growing ok and it certainly is, i am resembling a woman hiding a pumkin under her jumper lol!! I have been quite careful what i eat as well during my pregnancy and still take pro-biotic drinks every day (i am sure they help). Have a word with midwife as i did, i was worried about sharing a ward after the birth and sharing group toilets so she has put on my notes that if a single room is available then could i be allocated it due to a possible urgency. I am now 38 weeks and think i have had quite a good pregnancy except the morning sickness i had for 7 months but you just learn to live with it, with 2 weeks to go i finish work tomorrow so considering everything i think things have gone pretty well. Try not to worry but i know its hard (also think worrying doesnt help UC). I am hoping for a water birth with very little drugs but not ruling anything out yet, will let you know in approx 2 weeks if not before,

    hope i have eased your mind a little!!
    when is your due date??

    knp xx
  • Hi Louise
    Well hopefully I have a bit of good news for you, my UC has just got under control, it took a while, I went back several times to my consultant as I couldn't shake off the bleeding and it just wasn't getting better and after several attempts and various levels of doses of prednisolone it has finally worked. I ended up going up to 40mg daily at the highest which is the most we can have during pregnancy, reducing 5mg on a weekly basis, now down to 20mg so fingers crossed it'll stay away. it was either that or go in for intravenous which would just leave me open to infection. So Louise pester your consultant as much as you can, steroids are safe to take during pregnancy and at one point I was even considering coming off the azathioprine and staying on steroids, coz they are also safe for breast feeding, but you should see the size of me, I have ballooned quite a bit. After talking with my consultant lengthily about breast feeding and azathioprine as I have been on it for 3 years + and just had the recent flare up he would rather I stayed on it and research he read shows that the tiniest teensiest amount of it is passed through the breast milk, he got into figures that were so small I can't even repeat, and the side effect is like with us as it's a suppressant, other than that should be ok. Will check again in 4 weeks when i see him again.

    I'm having growth scans regularly and had my last at 28+4 last week with another booked for 32 +4 and all great so far, was concerned she might have had a massive growth spurt but she's ticking along the middle line nicely, apparently is the abdominal size that shows if baby is growing too fast.

    Serena - like you I read some awful things on the internet that got me very worried even before falling pregnant and I constantly hounded my consultant about it, (had 2 now since I moved in december) the problem with internet is everything is on there and you can scare youself too much, so I just take the advice of my consultant as they have to assess people on an indvidual basis and just hope they are doing the right thing by me and my baby.

    knp - 2 weeks to go, ooh you lucky girl, I want a water birth too, but like you not ruling anything out, main thing is baby is born nice and healthily and stress free. Hadn't thought about mentioning the toilet thing post birth, that's a very good idea, i too heard that it's more common to have a flare up after due to the stress of the birth.

    well sorry for the long post and thanks for all your replies, I do hope you all get through it without too many problems and it's nice to know there are others who we can get support from now that are in same boat.

    Em and baby j (29+5)
  • Wow it is unbelievably amazing to see responses from other girls in the same boat! Unless you've got an IBD I guess it's quite hard to understand - most people I know assume it's like having a dicky tummy - I wish!

    I've also got crohns but it's been dormant since it's been diagnosed so it's never caused me a problem thank god. Am def going to hound my consultant tomorrow.

    All my meds for UC are rectal usage (nice) so app. these don't harm the baby (all my current damage is down in that area) but I prob need another endoscopy just to check as I've had a lot of problems with my large intestine in the past. Hoping I can just continue on my meds. My main concern is losing weight as before I got pregnant I have been underweight for years due to UC (actually amazed I got preggers as I used to only get a period every 3 months), but I've gained a stone in the last 2 months so I think I'll be ok!!!

    Didn't realise that you're likely to have a flare up after birth - that's good to know so I can plan to get a bit of extra help around then.

    Hope everyone feels better soon!
  • hi louise
    can't believe you also have chrons, glad you're ok with that, that would be bad luck. well good luck hope you get sorted, I know how draining it is when you're losing a lot of blood.
    em x
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