Crohn's Disease Pregnancy Q's

Hi all,
How nice to find an Australian forum btw!
I have had Crohn's Disease for about 4 years now. Yesterday I went and saw my Dr and asked her about implications with getting pregnant with Crohn's (something we are thinking about this year). She told me I would stay on my current medication (150mg Azathioprine/ Imuran) which is safe for the baby, despite information that can be found on the internet. The only drawback is that it is not safe to breastfeed with! Well, I asked if there were any other alternatives, and she said no (apart from prednisone, and I'm not really keen to go down that path again!). Has anyone had any experiences with Crohn's Disease and pregnancy? I feel it is kind of important to breastfeed, and am thinking of possibly having a trial run of going off my medication (we will see, don't know if my Dr will be too keen!).
Anyway, any information is appreciated!
Thanks :)

Hi aussiegirl22,

I have had Crohn's disease for 14 years (had surgery in 2008) and am 8 weeks pregnant with our first baby. I am currently experiancing a small flare up although nothing i'm too worried about yet. I have just seen my doctor and he has advised me to stop taking my regular medication (150mg Imuran daily) as it is not recommend during pregnancy and has put me on a low dose of Prednisone (if you ask me any dose is too much of that stuff!) 25mg a day.
Apart from the obviously worry i have about affecting the babys development in these early stages i also worry about my health as i have alway experianced pretty heavy side affects from this drug in the past. I worry about the how much weight i will gain, the terrible innsomnia i experiance etc and how i am going to cope with it all whilst still trying maintain a healthy and active lifestyle!
My doctor has advised me that the risks to my health by not taking any medication far out weight the risks to the baby and the side affects of the drug on me. I trust my GP 110% as he has been with me through every single flare up and hospitalisation in the last 14 years.
I have an appointment to see my OB in a few weeks time and obviously i will discuss this with him then, but until then i have no choice to do what my GP tells me and try and cope with it best i can.
I must admit though, for someone who is 8 weeks pregnant i haven't had the slightest bit of morning sickness yet :) Maybe there is a god after all!

I will post again after my first scan!

I would ask again, or check with a different doctor even.
There's a lot of misinformation about what is and isn't safe during breastfeeding. Somewhere in the breastfeeding support section there'll be posts with a number you can call to check the safety of drugs during breastfeeding. The information provided by manufacturers is often incorrect - they just slap on an arse-covering "not safe" label and don't bother to check.

Hmmm, interesting that your Dr pulled you off the Imuran, my Gastroenterologist seems to think it's fine to take, and says she has guided many pregnancies through with it! They all seem to have a different opinion don't they!
I hear you on the prednisone, I hate it too. Weight gain (especially in the face!), not sleeping and all of that. What does your Dr say about breastfeeding and prednisone?
I am still hoping for the no medication route, but we'll see what my doctor says after my colonoscopy. Be sure to keep us updated :)

I have UC not Crohns but i've been down that path with what meds are safe etc..

I spent both pregnancies on 25mg of pred. The thing to remember is A flare up during pregnancy is a lot worse for mother & baby.
I was told Imuran is okay during pregnancy & breastfeeding. That will just monitor you more closely.
I know of a few woman who have b/f while taking imuran, most of them pump & dump.
Pred is also safe to take during pregnancy & breastfeeding.
I think if you dont feel safe taking Imuran then your best to start taking the pred, I know it's horrible & all but a flare up will be such much worse for you & you know that will happen if you stop taking your meds.

I had a minor flare at the begining of my 1st pregnancy & then stayed in remission till 8 weeks after giving birth. My 2nd pregnancy i flared about 20wks then stayed in remission till 10 weeks after giving birth.
If you have any more questions i'll be happy to try answer them :)

Thanks everyone for your advice it is much appreciated! Funny how everyone's Dr seems to have difference feelings about the Imuran / Prednisone issue.
My GP called me this morning and he has spoken with my OB (who i am yet to see in person since becoming pregnant, have an appointment in a few weeks time) and he said he has had some patients on Imuran throughout pregnancy but would prefer if i could cope with the Prednisone instead. I know in the past my Crohn's has responded well to the Prednisone so i am inclined to "tough it out" but i did tell my GP that i though 25mg daily was a failry aggresive amount to start me on. He said he would let me trial just half a tablet a day (so round about 12.5mg) to start with and if that wasn't working he would have to bump it back up again. He has also made an appointment for me to see a Gastro in a few weeks time to get his advise. (The problem with living in a regional area is that we don't have a permanant Gasto in town, they only visit for 2 days a month. And unfortunatley they only seem to last about 6-12 months then a new one starts coming. Very Frustating have to retell your medical history for the last 14 year to someone new all the time!)
Anyway, that makes me fell a little bit better, just taking the smaller dosage to start with. Its not that i don't want to get it under control as quickly as possible, i just don't think i need to go in all guns blazing. I still have a long road ahead of me yet!

I will know more after my scan on Wednesday and my GP appointment on Friday.

Sandy my G.I started me on the 25mg because i flared at the beginning, by the end of my Preg i was 5 mg, with my 2nd preg i started on 25mg, then dropped to 10mg & because i flared i had to stay on 25mg till the end of my pregnancy.

I do hope you able to stay on the 12.5mg & then drop to a lower dose. All the best with your scan. i look forward to hearing how it goes :)

Hi
Here's a link to thread about finding info on breastfeeding & medication

Thanks for that link!
And good to hear from other people out there in similar situations, make sure to keep us updated :)
I have my colonoscopy appointment next month (gee, lucky me) and will be asking my Dr more info about pregnancy/ going off the meds (??hopeful) etc :)

Hi All,
Well i've had a many doctors visits since i last posted and am feeling much better about things. I have seen a new Gasto who was very nice and i've seen my OB again plus had some blood tests done and have a Nucal scan booked for next week.
The Gastro has put me back on Imuran 150mg daily, and is slowly weening me off the Prednisone over the next few weeks. I explined that i wasn't sleeping very well on the Prednisone and was concerned that i was going to wear myself out before long. He also thought the same thing and didn't want me on them any longer than i have to be. My OB is happy for me to continue with this course of treatment as long as my Crohns dosn't get any worse, in which case i will have to go back on it. It doesn't appear to be getting any worse and i certainly feel a lot better in general. I'll be 12 weeks this Friday so i'm over the sticky bit......lets hope everything settles down and goes to plan.
My Gastro pointed out that i was well overdue for another colonoscopy and wants me to have one about 6 weeks after the baby is born...looking foward to that!
So all in all i'm not doing too badly.
I hope everyone else if feeling good also, talk again soon :D

Hi Sandy,
Yay for no Pred!! :)
Did your doctor mention anything about breastfeeding? Because being on 150mg of Imuran also, this is a concern of mine (well, it will be one day!) :)

I have my colonoscopy on Monday (gee, lucky me!), and I'm hoping for positive results and then to see what my Dr thinks about cutting down (or to stop taking) the Imuran... just to trial how I would cope with a lower dose...
How is your pregnancy going Sandy? :)

Aussie hope your colonoscopy went well & you got good results.
I had mine not long ago & didn't get great results but at least there is no cancer.

Sandy fantastic news about the pred, i'm really happy for you.
Hope your have wonderful pregnancy :)

Well I had my colonoscopy and my Dr only talked to me quickly (I have an app with her next week). Apparently my Crohn's is inactive (yippee!), but I also have a stricture. Boo, was a bit upset about that. I hope it's not too bad, will ask my Dr next week. The stricture really makes me wonder if it is worth going off my meds. The possibility of getting sick again and making the stricture worse (or getting more of them!) isn't a great prospect.
Boo.
Why does it have to be so difficult??

Sorry to hear that Aussie, it's makes it really tough.
All the best for next week and i hope you & your Dr can figure out a game plan so u can TTC :)

Thanks for that!
I'm 99.9% sure she will just want me to stay on my meds (Imuran) while we are TTC, as this is what she said last time.
I am yet to hear of a single person who has had a bad experience with Imuran and pregnancy, if anyone has heard of anything negative, please let me know! :)

I to haven't heard of any negative experiences with Imuran & pregnancy.
I wish you all the best on your TTC journey & i look forward to seeing your announcement :D

Hi Aussiegirl22,
I'm glad to hear your Crohns is inactive but i beg you, don't go of your meds! I had a stricture about 2 years ago and had to have surgey to correct it. It was the most painful experiance i have ever had to endure. It took me months to recover from it and its not something i want to do again in a hurry.
I am now 14 1/2 weeks pregnant, totally prenisone free (yay!) and back onto 150mg daily of imuran. I feel great, i've only put on 1.2kg and my tiredness has started to subside. I've been exercising about 3 times a week and although i haven't started to show i feel so pudgy around my stomach.
I don't have another appointment with my Gasto or OB until about mid April now so i'm just going to relax a little and start to enjoy the experiance. I will talk with both of them when i see them next and ask about breastfeeding while still on the imuran.

I hope everyone else is doing well!

Hi Sandy,
Thanks for your update! It's really helpful to hear from other ppl in the same situation.
So I had my colonoscopy and my follow up appointment. It turns out my crohn's is inactive and I have a stricture- although my stricture is fine, it doesn't need operating on or anything, and I have no symptoms/pain from it (lucky me!). I think I have had it for a few years from what my dr said.
I asked my Dr if I can cut down on my imuran and she gave me a firm "No! Not if you're going to be trying to get pregnant." So yep, at this point it sounds as if my best bet is to stay on the imuran. I would HATE to get sick again and get another stricture (or make this one worse). We're not planning on trying until the 2nd half of the year (at some point), so we still have some time. My only concern is the breastfeeding. I would be happy to even breastfeed for the first couple of months, as I feel its pretty important. Oh, the joys of Crohn's ;-)
Good luck with your pregnancy! Looking forward to hearing your next update :)

Aussie if you click on this link https://www.bellybelly.com.au/forums...stfeeding.html it will take you to another part of the forum with some helpful advice.
I suggest you call Rodney on the number listed there he will be able to give you some information re the breast feeding & Imuran :)

If it's something you really want to do make sure you find out all your options & don't take one Dr's advice. I made that mistake my first time.