Need some kind words please

[Kerry]

Hi,

Im 38 and currently 14 weeks pregnant (tomorrow) with my first, and likely last child (2 IVF's to get this far and dont want to go through that again).

I got diagnosed with Crohns August 2011 and tried prednislone and 3 weeks of Azathioprine but they didnt work so Feb 2012 i went on to infliximab and have been on it 8 weekly ever since. My crohns is in remission.

I was bed bound for 3 months Jan - March this year with a bad flare. Ive never had an operation.

My consultant said i cant have infliximab after 24 weeks pregnancy. im due an infusion in 2 weeks - 1 day before 16 weeks and again 1 day before 24 weeks.
Tomorrow im supposed to start Azathioprine. My consultant says im too high chance of a flare again in the 3rd trimester if im on no drugs. I had thought i could just stop Infliximab after the 24 week infusion then start again after baby was born. Seems this isnt advisable.

I hate taking drugs and i have put it off before hence i got so ill early this year. So now i listen to my consultant more and i no longer just assume things will be Ok - hard as that is.

So tomorrow i start 1 tablet (50mg i think) of aza a day for a week, then up to 100 for a week then 150 and stay on that. I understand i can breast feed on this drug even if i chuck some milk away a few hours after the pills.

So my concern is that last friday I had a scan of baby. It was very normal for 13 weeks and 3 days, normal size and moving loads. It didnt want to get in the right position for the tests but its just camera shy like its mum i guess. It was a totally magical moment. Im getting fat but it all seems surreal after we have tried for 3 years to get pregnant and gone through 2 x IVF and a crohns diagnosis and 2 flares. So im protective of baby.

Im looking forward to getting off infliximab, although its worked really well for me, my consultant keeps telling me its the back up drug so they want me on aza then i can have infliximab if i have a flare again. im sure theres some element of cost as well as its expensive. Ill be glad not to have to go in the hospital every 8 weeks though. That makes me depressed for several days afterwards.

I know its unusual to start a new drug whilst pregnant but thats what ive been told to do and i know a flare up is much more risky for baby than the drugs.

So i need to hear positive stories about starting Aza whilst pregnant, or even just being on it. I have the weekly blood tests booked. Is it likely to cause a problem that ill be on inflximab and Aza at the same time? Just worreid about the double dose altough i know they are different drugs and act in different ways. I see my consultant again in a few weeks so my plan is that if the blood tests from the aza are seeming Ok, and the next baby scan is ok (5th Dec) then im not going to have the 24 week infliximab (would be early Jan). By then ill have been on Aza 10 weeks so it should be in my system and working so no need to risk double the dose then.

Since being pregnant i have suffered with constipation - a novel experience so im definitely in full remission now, just very scared of getting as ill as i was early this year and hurting baby.

Sorry for such a long message :ysmile:

 

[Ihurt]

Hi there.

Congratultions on your upcoming bundle of joy!! I can understand your hesitency when it come to taking different drugs while pregnant. I am assuming you are working with your OBGYN as well with your intestinal issues?? You could also call the manufaturer of the drug you are taking and see what they say as they are usually more knowledgable about the meds and their risks to the baby and so fourth. If you are in remission, did your doc say why he/she wants you on any meds?? I have also heard that when a woman gets pregnant sometimes the body does weird things and it protects you even more so you may not even have any flares. My good friend has chonic health issues and she is pregnant now and she said she had never felt better. Her doctor said that this is not uncommon, that the body goes through all these changes and it more alert and protective.

I mean as long as you have your OBGYN on board and she knows of all the meds you are taking, you should try not to worry too much. Also, call the drug company as they will be the most knowledgable about the drug.

Try not to stress too much, stress is no good for either condition.....

 

[Kerry]

Thanks ihurt.

My OBGYN is the same doctor that i saw for IVF so he is familiar with my case. He also sits in the next office to my crohns consultant. He is completely clueless about crohns so completely takes the lead from my crohns consultant but between the two of them they seem to muddle through.
I read all the gumpf with the aza tablets last night and thats always scary. but i took my first tablet. i woke early this morning worried whether i had pain anywhere and if i could feel baby move (which i cant really as im only 14 weeks). Im going to ask my midwife for another scan in 2 weeks to just give me peace of mind. But ive thought about it long and hard.
I think that if i stopped the infliximab at 24 weeks and then took nothing id be fine for the pregnancy. Pregnancy apparently lowers your immune system anyway and my guts have certainly slowed right down. But as soon as I had baby i think id have a flare. The flare i had early this year really scared me. I never realised i could get so ill id want to die. I dont want to get like that with a young baby aswell. So im going to try and trust the crohns doc - although my faith in doctors isnt what it used to be - and take the aza.
There is a lot to be said for 'if it aint broke dont fix it' and the infliximab is really working for me but i cant have any more after my next 2 doses anyway. Now baby is past 12 weeks im told Aza is fine and im having weekly blood tests and ill ask for another scan in 2 weeks and thats all i can do i think.

Thanks for your help, much appreciated.

 

[Ihurt]

Hey Kerry,

Thats good that your GI and your OBGYN are on board together. Thats awesome!!You rarely see that where two doctors actually work together to help their patient. I like that.

Yeah, I hear you. I totally understand you do not want a flare when you have a newborn to look after. I guess I would trust your two doctors, I mean it seems like they are looking out for both you and the baby. If it makes you feel better, you can probably go to your OBGYN more often just to check and make sure things are ok.. Yeah, 14 weeks is pretty early on for you to feel a lot of movement yet from the baby. You will really start feeling that when you are about 6 months and so fourth! It is really neat. I remember just laying on the couch and watching my stomach move. It was like waves going up and down in my stomach .

Try not to stress to much about the meds. Believe me, A lot of pregnant women have to be on meds and their babies are perfectly healthy. I think maybe I agree, it is better for you to keep the crohns in check with taking the meds so you dont have a flare. I mean having a flare I think would put a lot of added stress on your body. Like I said, at least you have both your docs on board with this. That is reassuring.

 

[StaceyQ]

hey

congratulations on your pregnancy.

like everyon else as said try not to stress.

I was on pentasa when pregant with my second and no problems, she is fit and healthy. The doctors deal with this day in and day out so please dont worry. they will alsys be thinking about your baby and you x

good luck x

 

[Kip1]

Hi Kerry
Congratulation with your pregnancy. I am aware of a lot of mums on here who thrive when pregnant with & without meds but I understand your concerns regarding a flare afterwards when you are having to take care of a new baby. Try not to stress yourself & leave the worrying to your doctors, easier said than done I know but as long as you do your best to eat healthily & keep regular check ups then everything should go ok.
My mum was undiagnosed when she was having me so was on no meds at the time & went in to flare straight after having me. She was on meds when she had my brother & was fine during & after the pregnancy.