Pregnancy and chronic illness

[Mrs_chris_36]

Hi everyone,

Does anyone else here have any kind of ongoing illness that is treated with medication that they have to continue to take throughout pregnancy to keep themselves well?

I have crohn's disease and its pretty active if i don't take my medication, I'm on some pretty toxic stuff and its terrifying me as I'm 7 weeks pregnant. Obviously I've spoken with my consultant and although the drugs manufacturers don't recommend in pregnancy my consultant says they have to say that as not enough research has been done on the medications. The general consensus is a flare up of my illness would do more harm to my baby than the medications i am taking.

I'm really trying to chill out about this but i dunno, i just wondered how anyone else in the same situation copes.

Thanks
Andie

 

[lm3898]

Hi!

I have ulcerative colitis and I am also totally nervous about meds...I haven't seen my OB yet [first appt Mon] but my colitis doc told me to keep taking all my meds and my gyno said to listen to my gastro doc...

I'm taking 16 pills & 1 suppository daily for it...

 

[Mrs_chris_36]

Thanks for your response, being a first timer is scary enough as it is without having to cope with some stupid health condition!! ....

......must chill stat!

x

 

[~Linzi~]

I have crohns and am currently pregnant with my 4th. I remember being scared first time round as there were so many unknowns and during my first pregnancy I was on azathiaprine. (There wasn't much information about safety then either, as it was 8 years ago)
While I know every patient is different, I've found and heard from others that pregnancy helps to stabilise crohns, and breastfeeding after helps stabilise the hormones so they don't play as much havoc and cause a flare.
I've been fairly lucky, I've been off the meds for 5 years and had a bit of a flare after my second, which we were able to control with some minor medication and diet. (I've had issues with other related issues but not so much the crohns itself iykwim) I've been pregnant/breastfeeding for over 8 years all back to back, and from MRIs I can say there's been little progression in my crohns.
I know everyone's different, but I always thinks it helps to hear some of the more positive stories.

 

[Mrs_chris_36]

Thanks for your response Linzi, I'm on 6MP which is the same type of med as the Aza and i've been told it can cause low birth weights and early delivery did you have any issues like this? Thanks x

 

[~Linzi~]

I had heard and read all sorts of horror stories about miscarriages, premature births and low weight. But my son was perfectly healthy, induced for being almost 2 weeks over due and weighed in over 10lbs! My younger two came on their own steam around their due dates and weighed in the 8lb range.

 

[lm3898]

Wow that's amazing! Doc told me yesterday risk of pre term labor is slightly higher...

 

[rubysoho120]

I have ibs but don't take medicine for it. I have researched and saw many things about pregnancy making symptoms better. I also have food allergies. I did avoid the foods but craved them and many people can eat what they are allergic to during pregnancy. When I was pregnant the first time I was able to eat all the foods I had to avoid due to my ibs. And even after birth I still can enjoy them. I'm not sure what a flair up would be like for you but maybe you can talk about taking a lower dose or weaning off? That is what I would do.

 

[lm3898]

I don't know about others but I can't wean off a daily medication for a disease...my medication keeps my disease in remission.

 

[SillyMoo1983]

Hi, I have ulcerative colitis and I'm pregnant with my second. The first pregnancy I was bleeding throughout (due to the UC) and was anaemic but other than that I felt well. I was on Asacol and Colifoam which are apparently safe. My DD was born full term by EMCS weighing 5lb 2oz. Whether it was caused by UC or because there have been small babies in my family I'm not sure. But she was perfectly healthy this time I'm under consultant care so hopefully they'll keep a closer eye on me.

 

[Mrs_chris_36]

No unfortunately the disease has to be controlled with daily medication, there are no options to ween off, i did ask my consultant if i could lower the dose slightly and he said if it were lowered it it would be a maintenance dose and would therefore be ineffective in controlling the disease.

Thank you Linzi your comments have made me feel much better

 

[~Linzi~]

I think the biggest risks come when the disease isn't controlled or if you have a big flare during pregnancy, as it means you wouldn't be getting adequate nutrition and its hard to sustain one life like that, let alone two.

However, if the medication is controlling the disease, then the risks balance out as being better all round to stay on them vs any minimal risk to the baby from the medication. (And its hard to know what, if any risks there truely are as its too controversial to test on a pregnant or breastfeeding mother)

I was lucky that my meds got my disease under control initially, and then with pregnancy and breastfeeding it has helped stabilise my crohns, with only one minor flare where we discussed medication again but it wasn't necessary. As long as I'm careful with what I eat then I do OK. But I know this is different for everyone as even my dads disease presents somewhat differently.

I'm glad to have been of help. 8 years ago I struggled to find any kind of information or real life scenarios, mostly hypothetical examples from doctors which really didn't help.

 

[maggiesimpson]

I am also pregnant with my first and am relatively knew to crohn's (diagnosed a year ago). Just saw my GI doc this last week, and he said that all the drugs similar to what I'm already on are in category C. That basically means that they can't prove anything, so they err on the side of caution. The doc said there was one study siting a risk of congenital defects and preterm births, but that those were more likely caused by the mother's health than by the meds (the study said that). He told me if I go off the meds I risk a flair and that is for sure bad for the baby.

I told my husband this info and he freaked out right away and wanted me off the meds, not understanding the risk of a flair. I noticed pregnancy slowed my bowels down quite a bit. And the occasional Zofran I take makes things almost impossible. It tends to bind people up, so I thought having crohn's would balance it out. Nope. I have never had such painful BMs. That aside, I am staying on my crohn's meds and enjoying not having to run to the bathroom multiple times a day. Best of luck to you.

 

[Mrs_chris_36]

Thanks so much for all the responses it really does make you realise you're not alone. MaggieSimpson i also found that in the 1st few weeks of pregnancy my digestive system slowed down so much so that i was badly constipated for a couple of weeks...i haven't had constipation or a solid bowel movement for that matter in 15yrs! The constipation has eased off now and i'm probably going only slightly more than the average person. The main issue for me is all the trapped wind that's pretty painful ....like i say though i am starting to chill about it as i know its just so counter productive...

Thanks again you've all be really helpful x