Crohn’s disease and pregnancy

[EmC96]

Hi all, sorry it’s a bit of a long one but I need some mummy support....

I have just come out of hospital after a month.
Before going in for months I was rapidly loosing weight ( 3 stone in total), unable to eat, being sick, dihorrea / constipation, fainting, severe dehydration etc.

I went into hospital 4 times for IV fluids due to dehydration before they finally decided to admit me as I was fainting so much and really weak.

They decided to thoroughly investigate and it turns out I had a severe narrowing of my bowel, active Crohn’s disease, a bowel infection and a urine infection. I had to have iron infusions , 2 weeks of strong IV antibiotics and steroids. I was sent to UCLH hospital in London to see a specialist in pregnancy and Crohn’s who has started me on biologic injections to reduce the inflammation in my bowel and hopefully setttle the Crohn’s.

Due to the Crohn’s disease I do not absorb any nutrients from my diet and I’m also on a strict no fibre, low residue diet. I cannot have fruit and veg or anything that’s good for me due to the risk of it getting stuck in my bowel.

They have sent me home on many vitamins, steroids to taper down and the injections to do 2 weekly.

My concern is that I’ve only put half a stone on and my diet is so limited I’m not getting anything good. My muscles have completely washed away , I struggle to get in and out of the shower alone and climb up the stairs. I’m so weak.

I am taking ensure drinks twice a day to help take in calories and goodness but I’m worried it’s not enough.

Can anyone give me advise?? Has anyone been pregnant with active Crohn’s disease? Do I need to have a c section?? I’m so confused by it all after being told it was hyperemisis for so long. I actually have a life long condition!

Hi! I’m currently 12w and have Crohn’s disease, diagnosed in March 2019 after 2 surgery’s.

I get biologics treatment (stelara as I was allergic to infliximab) and my consultant wants to continue this throughout my pregnancy to keep me stable... albeit my preference was to come off it immediately.

I have been sick for 7 weeks now (pregnancy related) but my normal life is nausea, tiredness and stomach pain everyday with my crohns... and I’ve actually found that the pregnancy sickness has taken over everything and I wish for my normal crohns symptoms to come back as the pregnancy sickness is just unbearable and I’m massively struggling.

The difference is that I was stable for 6 months before getting pregnant as if it was March/April last year when I got pregnant I wouldn’t have been able to manage!

I 100% have to have a c section because the risk of infection is too high, and I also have a fistula which could cause difficulty!
Hope you are okay x

Hi, I have crohns but luckily not active whilst pregnant. Was on Humira (biological drug) and azathioprine in pregnancy. Had to stop the humira for final trimester but could resume as soon as baby was born. Can't breast feed on azathioprine so stopped that once baby was born.

The advice I was given by my consultant is that it's much better to stay on the meds and have a better pregnancy than stay off the drugs and suffer with Crohn's.

My advice would to be stay in touch with your IBD nurse team and post a similar message on the Crohn's and colitis forum on Facebook. Lots of good advice and moral support from people that will have been in your exact situation.

My consultant advised a c section to stop any tearing 'down there' as previously had a perianal fistula. Had a really good recovery. Wishing you the best of luck.

Hello all, I'm reviving this thread (hello OP, how did it go for you?) and also looking for others who are pregnant right now with Crohns.

I am 4+2 so very early in my pregnancy but already noticing what feel like symptoms of a minor flare. Usually my disease is pretty inactive and I don't notice much, I try to control symptoms with strict diet. I was meant to start a course of medication earlier this year to get my disease under control so I could conceive but the pandemic made that impossible, I wasn't able to go to the hospital to do the basic tests to start the meds. Now 8 months later I've fallen pregnant and am worrying about these new symptoms as I know it can lead to increased risk of miscarriage. I'm trying to just stay calm, low stress, yoga and lots of sleep and food that I know I can tolerate. I contacted my IBD nurse but haven't heard back from them yet.

Anyone's experiences would be welcome.

Can't offer too much advise as my Crohns is mild, and manageable on medication (Octasa 800mg) although I've had quite a few flare up since becoming pregnant. I've had a lot of blood after bowl movements (sorry TMI) and have found myself feeling sick/unable to eat a meal when having a flare up. I was given additional meds to take on top of my current meds to help clear a possible infection, but I haven't taken them yet as I'm worried what they'll do and really wanted to avoid meds all together tbh but was told it's safer to stick to what my body has been used to for the past 2 years. I asked my midwife about a C-Section and she seemed to think that there's no need to worry and I'll have a natural birth with no complications, but I have 2 extra scans (32 and 36 weeks I think) with a specialist who I can talk to directly if I have any worries. Definitely am worried that a natural birth is going to cause me to "strain" too much down there and do serious damage but as this is my first time I have no clue!

Thanks for your reply @Amelia49, it's really helpful to read about your experience - and for anyone with Crohns it's not TMI at all!
I'm sorry to hear you've been so sick, I hope that eases off as the pregnancy progresses. If it doesn't, maybe the extra medicine will be helpful to you, even if you just take it in the short term?
I haven't even begun to seriously consider the whole natural childbirth vs C-section situation - is this due to fistulas or hemmaroids or something else? I hope you get to have the kind of birth you want!

I'm not on any medication at all, as my Crohns was really inactive previously, like I had zero symptoms, but a colonoscopy a year and a half ago showed that there was some active inflammation just that I couldn't feel it. My specialist was worried that getting pregnant might activate symptoms and wanted me to start a course of medication, but like I said previously that was derailed due to the pandemic and I was deemed low priority for treatment. Now, though, I suppose what he worried about is happening. It's very mild though - I am not having blood or mucus in my stool (always a big symptom for me with flares), just digestive pain and I had diarrhea once, so not too bad. I've contacted the specialist to ask if maybe there's something I could take in the short term just to get through the first few months etc.