Pregnancy & Crohn's... very confused after my dr app!!

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Aussiegirl2008
Regular Member


Date Joined Feb 2008
Total Posts : 80
   Posted 1/12/2010 12:46 AM (GMT -7)   
Hi everyone,
I have had Crohn's for about 4 years now, and I am taking 150mg of azathioprine (and have been for a couple of years), and have been feeling pretty good as long as I stay away from certain types of foods.
I went to my dr today and asked about pregnancy and azathioprine (just thinking about the fututre!), and she told me it is safe to take whilst pregnant (despite reading otherwise on the internet), but you can't breastfeed.
I asked if  there were any other alternatives and she said pretty much 'no', apart from prednisone (which I am not wanting to take again unless absolutely necessary!).
I am not really keen on the whole no breastfeeding and would rather take something else that allows breastfeeding, or even try taking a break from the medication completely.
Does anyone have any experiences/ suggestions etc?
Thanks for your help!

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 1/12/2010 7:44 AM (GMT -7)   
Hopefully Stef17 or Inflamed will be along soon. Both have had successful pregnancies as well as other women on the forum while on meds such as Imuran/6mp, Humira, Remicade, Pentasa and Pred. I believe it is Stef17 who has a few links about these subjects. Hopefully she will be along soon.

Hugs
Gail*Nanners*
Gail*Nanners* Co-Moderator for Crohns Disease & Anxiety/Panic
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

fruitgirl
Veteran Member


Date Joined Feb 2009
Total Posts : 7150
   Posted 1/12/2010 9:25 AM (GMT -7)   
Here's a great article about pregnancy and IBD, which includes info about breastfeeding. You have to copy and paste the link into your brower window and will have to have acrobat to veiw it.
http://www.ccfa.org/ccfaprof/ibd-journal/Dec%202008%20-%20Management%20of%20the%20Pregnancy%20IBD%20Patient.pdf
Co-Moderator, UC Forum
Status: Remission since May 2009!
Symptoms began in November 2008, ~4 weeks after giving birth to my son
Diagnosed with pancolitis on 1/30/09
Meds: Apriso (4 0.375g pills ONCE!! daily), mesalamine enema twice weekly, Natural Factors Ultimate probiotic 12/12 Formula, multivitamin.  Used prednisone (starting dose 40 mg) to get into remission.
 
 


gypsyfp
Regular Member


Date Joined Jan 2010
Total Posts : 336
   Posted 1/12/2010 1:44 PM (GMT -7)   
My GI told me to never have kids.
I don't know if it's because all my Crohn's is now perineal/rectum or because she doesn't think women with Crohn's should have kids.
I always knew kids weren't a good idea, but it's still hard to hear.
Diagnosed with typical Crohn's at 16.
Got lucky with Asacol for a year, then even luckier with ten years of relative remission.
Now abscesses and fistulas are having an "atypical" Crohn's party around my junk.
Remicade is coming to get me soon!


Stef17
Veteran Member


Date Joined Feb 2003
Total Posts : 1811
   Posted 1/12/2010 4:56 PM (GMT -7)   
Dr. Thomas Hale is the leading expert on medications and mother's milk. He  publishes an updated version of his book every year. He has a website you can browse for info. This is all I could find on azathioprine:
 
 
You can search the whole site and see if you find more. I just have a wiggly kid on my lap right now so she's hindering my progress. :) Here is the main link to Dr. Hale's site:
 
 
 
I breastfed all 3 of my kids while taking all of my meds - remicade/humira, asacol, prednisone, and nexium. Sorry I don't have anything to tell you about azathioprine. My understanding is that it is a no-no, but Dr. Hale seems to say different. Maybe your GI or OB can get his book and read up on it.
 
 
To Gypsyfp: Get a 2nd opinion.

Post Edited (Stef17) : 1/12/2010 4:59:18 PM (GMT-7)


j_web
Regular Member


Date Joined Nov 2009
Total Posts : 205
   Posted 1/12/2010 6:01 PM (GMT -7)   
I wasn't diagnosed while pregnant, but I was shortly after - and I was still breastfeeding.

My opinion is that breastfeeding is worth it. There's even reason to believe that babies breastfed for x amount of time have greatly reduced chances for developing diseases such as Crohn's. So, if it were me, I would go off the meds (close to the due date) and do my best to breastfeed and stay well. I'd probably use fish oil and probiotics and eat a very easy-on-the-gut diet. There are some medications that could be helpful for flares while breastfeeding - I've had success with Vancomycin before (pill form is molecularly too big to pass into breastmilk) and I would consider lower dosage prednisone and milk pump-and-dump (a way to get the drugs out of your milk). If I started to get too sick, I would stop breast-feeding, but I would give it a good shot before I got to that point.

My doc has also indicated that Imuran is safe during pregnancy. And she also strongly suggests staying on medication while pregnant. I'm sort-of in the same boat as you except I'm not currently taking long-term crohn's meds.
CD since July 2007 - prenatal vitamins + extra vit. D, vit. C and iron, fish/flax oil, probiotics

Following excellent Omega-3 diet as per James Scala's 'The New Eating Right for the Bad Gut' - got me out of a flare.


inflamed
Veteran Member


Date Joined Nov 2005
Total Posts : 1340
   Posted 1/12/2010 7:21 PM (GMT -7)   
I'm pregnant with baby #2 right now. Just doing Pentasa. I was on 6mp before baby #1 (similar drug to Imuran). GI was okay with that during pregnancy, but I got off for other reasons. There are plenty of okay drugs while pregnant. Like Stef17 said, Remicade and Humira are fine and pretty much all docs are okay with treating flares with pred. Pred's been along so long there's a lot more information on that than other meds. Dr. Hale's site is the best for breastfeeding info. The most important thing is for you to be healthy so baby can be healthy. Postpartum flares are common (I had a mini one at 4 months). The hormones from breastfeeding seem to help with that, so maybe you can breastfeed and be on a milder maintenance drug rather than giving up all meds. I breastfed my daughter 15 months on Pentasa. Anyway, ask around. There's a lot more information than your doc is leading you to believe. My CCFA chapter does a yearly educational conference for patients and there are a ton of experts there. Those types of events are good things to attend, then stick around after the presentation to ask your questions.
Mom to a healthy Pentasa baby and pregnant with #2. 5+ years remission, woo hoo!


Aussiegirl2008
Regular Member


Date Joined Feb 2008
Total Posts : 80
   Posted 1/12/2010 10:34 PM (GMT -7)   
Thanks for the information,very helpful and great to hear from people in the same (or similar) boat!
I am in Australia and I'm wondering if all of the medication that is in the US is available here? Maybe my Dr just isn't giving me all the information (why??). I am very seriously considering getting a second opinion from another gastroenterologist, because right now I don't like that I have been giving NO options, just 'you need to stay on the Imuran'.

Lady G
Regular Member


Date Joined Sep 2006
Total Posts : 321
   Posted 1/12/2010 11:22 PM (GMT -7)   
Pregnancy and Imuran seem to be very disputed amongst doctors all over. My family doc was VERY against me taking Imuran while I was pregnant last year (my little guy is almost 10 months now and completely healthy). My Gastro had no worries at all and reassured that Imuran and breastfeeding is fine. So it conflicts all over with every doctor and such and every study it seems. Either way I took Imuran most of my pregnancy, I quit near the end and baby as I said is completely healthy. The one thing with me was I didn't trust to breastfeed my baby on Imuran cause I read enough of the bad and I stopped my meds, and I was supposed to go to the doc really soon to get new meds that were more breastfeeding friendly.....unfortunately a bunch of stuff happened, I couldn't get in nearly in time and I flared while not on my meds...so if your thinking of taking a break--DON'T....I did that and others did to that I've read here and we regretted it completely. Taking your meds and being healthy is much better then anything--healthy mom to watch baby is whats needed first and foremost. When I flared I ended up in hospital, on morphines, strong meds, getting tests and basically lost all ability to breastfeed and got put on a mix of meds that allowed no breastfeeding so I had to give that up. I flared for months too, not just days or weeks. It's happened to a few of us, trying to go 'strong' and no meds and when you end up in a flare for months, unable to take care of yourself much less a baby it's the worst thing possible. I cried and cried over not being able to breastfeed anymore, felt so awful that I couldn't even do that for baby...BUT it passes and my little man is completely happy on bottle, I'm happy he's healthy and happy I am back on track now to being under control and such, no more flare.....so really I know breastfeeding is a personal choice, but NOT breastfeeding isn't a failure and such if you HAVE to go that route....and stopping your meds to make sure you can breastfeed is one of the WORST things you can possibly do. Hopefully you find a good mix of everything and Good luck with the pregnancy of course!
 


bookgal77
Regular Member


Date Joined Jul 2009
Total Posts : 83
   Posted 1/13/2010 2:12 PM (GMT -7)   
Appreciate hearing everyone's input on this. My parents are both primary care doctors and they are very much against me having children. My mom told me I would die during childbirth and my dad told me I would have a deformed baby. However, two different GI doctors have told me it's totally safe to have children, and the only things I would need to do differently are go to a high-risk ob-gyn and have a c-section instead of normal delivery. So it's good to have articles like the one that was linked to so I can provide to my parents to get them to shut up. They're just a little too biased in this case. Very frustrating.
**32 year old female; Diagnosed with ulcerative colitis in 2001; diagnosis changed to Crohn's disease in 2009
**Asacol (4000 mg daily), 6-MP (100 mg daily), Prednisone (30mg daily...for now), Nexium (40 mg daily), Flagyl (500 mg daily), Sulfasalazine (1000 mg daily), and getting ready to start Humira
**Thankfully only two major flare-ups...2001 and 2009. Hoping to have another 8 years in between the next one (sadly, I do know there will be a next one).


Rider Fan
Veteran Member


Date Joined May 2008
Total Posts : 1445
   Posted 1/13/2010 2:27 PM (GMT -7)   
Wow, parents of the year...
33 y/o male. Dx'ed in 1999. No surgeries.

Current meds: Humira 2/27/09. Proferrin iron pills.

Tried SCD, didn't work, now avoiding gluten and dairy.


Go Saskatchewan Roughriders!


Aussiegirl2008
Regular Member


Date Joined Feb 2008
Total Posts : 80
   Posted 1/13/2010 3:17 PM (GMT -7)   
I also found this link where there are a few brochures including one on Crohn's Disease & Pregnancy. Bookgal- you should get your parents to read it!!

http://www.drfalkpharma.de/nc/patients/patient-brochures/ulcerative-colitis-crohn-s-disease/?L=1

fruitgirl
Veteran Member


Date Joined Feb 2009
Total Posts : 7150
   Posted 1/13/2010 3:40 PM (GMT -7)   
Aussiegirl, just want to chime in here about not worrying too much about breastfeeding. It's ABSOLUTELY more important that you stay well than it is to breastfeed...trust me! My UC symptoms first began about 4 weeks after I had my son (who was born in Oct 2009). By the time he was 8 weeks old, I was so sick, I'd lost my supply. In the meantime, I'd been seeing my primary doc, who wasn't sure what was going on, and was ordering stool tests and such. By late November/early December, he was ready to send me to a GI, but my symptoms cleared up dramatically. I wasn't "normal," but I was ok. Then in January the symptoms came back, I was sent to a GI, and finally diagnosed at the end of the month.

I was initially very, very, very upset about having lost my supply. But, now that I look back and see everything differently, I wish I'd know what was wrong much earlier on, so that I could've gotten treatment and gotten well sooner. Having a newborn and being so sick is not fun, and is not a good way to spend quality time getting to know and enjoy your newborn. Your baby will be much better off in the long run if you're well and formula feeding than if you're sick and breastfeeding.

Good luck!
Co-Moderator, UC Forum
Status: Remission since May 2009!
Symptoms began in November 2008, ~4 weeks after giving birth to my son
Diagnosed with pancolitis on 1/30/09
Meds: Apriso (4 0.375g pills ONCE!! daily), mesalamine enema twice weekly, Natural Factors Ultimate probiotic 12/12 Formula, multivitamin.  Used prednisone (starting dose 40 mg) to get into remission.
 
 


sgirl
Regular Member


Date Joined Jul 2009
Total Posts : 417
   Posted 1/13/2010 4:47 PM (GMT -7)   
my daughter is now 3 months old and I had a flare of UC the entire time I was pregnant (not sure how much of that actually turns out to be crohns as i wasn't diagnosed with that till a few weeks ago) but... this is what I was told by my GI as well as my OB:

I took Lialda, was told it was one of the safest drugs to take, and prednisone. My GI kept pred at 20 mg the whole time just to be on the safer side. He wanted me to start Imuran as soon as I delivered, as it is either a C or D for pregnancy (depending on who you talk to). Only problem was that while on Imuran I couldn't really breastfeed (bf). He did some research and got a few opinions and came up with taking imuran at night and pumping/throwing away my first morning milk. then for night feedings you give them a bottle (I gave her pumped milk from during the day). That worked well for us. However after a few days I stopped taking imuran, I hated throwing the milk away, it felt like a waste. So we tried just diet control (while tapering off pred) that didn't work and was then diagnosed with crohn's after a colonoscopy. My GI urged me to take imuran again, he really wants me on remicade, but with the new insurance I have they won't cover it, and start pentasa. There really haven't been enough studies done on long term effects of imuran and bf'ing. He said if I continue to nurse it would be at my own and her risk. I decided to stop. She had 3 months of breastmilk, better than nothing. and in the meantime I had been storing a lot of milk in the freezer and had about a months supply. She's about half way through that now.

During pregnancy I was watched really closely by my GI and OB, I went in every 4 weeks for both, then once I hit 30 weeks I was every week with my OB (I was already high risk from a previous stillbirth at 33 weeks) also would like to add that it is important for you to try and stay healthy during pregnancy. the baby will get all the nutrients it needs before you do (we get the left overs). So prenatal vitamins are very very important.

Being pregnant with UC/crohn's is completely possible. However I wouldn't suggest getting pregnant during a flare, although one upside of that is that you don't have the constipation pregnant women have :) Some women report having no symptoms and feel even better while pregnant, while others seem to get worse (I was in the worse category).

It's all up to you. Good luck.
Diagnosed with UC in February 2009.
Diagnosed with Crohn's Colitis December 2009.
Flaring since October 2008

Medication: tapering off Prednisone (5mg), Pentasa 6x daily, Imuran 100 mg, hydrocortisone enema nightly, multivitamin. Probiotics through yogurt.


inflamed
Veteran Member


Date Joined Nov 2005
Total Posts : 1340
   Posted 1/13/2010 6:29 PM (GMT -7)   
Bookgal-- that's completely ridiculous. Sorry you've ever had to hear that. I have a perfect not deformed baby and had an easy vaginal birth. You only need a C-section if you've had fistulas or prior ab surgery. I can't understand what would cause your parents to say such things. Get yourself healthy and in remission, take something pregnancy safe to maintain it and have a healthy 9 months and baby. Ughh, I'm just shocked and upset you were told that. Maybe it's my super pregnancy hormones. I'm having a wonderful pregnancy for the second time and could not imagine missing this wonderful experience, my daughter or this next baby. Do your own research and good luck to you.
Mom to a healthy Pentasa baby and pregnant with #2. 5+ years remission, woo hoo!


bookgal77
Regular Member


Date Joined Jul 2009
Total Posts : 83
   Posted 1/14/2010 1:27 PM (GMT -7)   
Thanks all for your support. I do actually have several fistulas (rectal-vaginal, rectal, and external) so I think that is why the doctor told me c-section was the way to go. But everything else I read about pregnancy seems to indicate that it would be perfectly safe for me to do so. I've actually always wanted to have my own child and also adopt a child and am more worried about getting through the adoption process with a chronic condition than getting pregnant and having a healthy baby. It's so great to hear everyone's stories about their own successful pregnancies. I wish everyone well!
**32 year old female; Diagnosed with ulcerative colitis in 2001; diagnosis changed to Crohn's disease in 2009
**Asacol (4000 mg daily), 6-MP (100 mg daily), Prednisone (30mg daily...for now), Nexium (40 mg daily), Flagyl (500 mg daily), Sulfasalazine (1000 mg daily), and getting ready to start Humira
**Thankfully only two major flare-ups...2001 and 2009. Hoping to have another 8 years in between the next one (sadly, I do know there will be a next one).


joohana
Regular Member


Date Joined Feb 2009
Total Posts : 66
   Posted 1/15/2010 3:07 PM (GMT -7)   
Hi, I´m sure that hearing a no to breastfeeding when talking to your doc about a future pregnancy must be upsetting for you. Do get a second opinion but be prepared that it will be a completely oposite one and that you will have to make the final decision.

I have two children-first was breastfed for 3 weeks, I was just diagnosed with Crohns and was in the middle of a flare up, thinking that my joint pain had been caused by me lifting the baby so much.
I was given Pentasa and advised to stop breastfeeding, which was probably to the best since my little one was mainly on formula anyway (but it took me two weeks to realise he was hungry)
With the second baby, I didn´t want to breastfeed at all, worried I will torture the baby with hunger again without realising. I was taking Pentasa and Entocort which my doc didnt recommend to breastfeed with.
Our baby girl is 10 months now and is still partially breastfed-I have been in remission for a while, am only on Pentasa, decided to go off Entocort a week before birth in order to try breastfeeding.

Do get as much info as possible but dont worry about not breastfeeding too much, you never know what will happen and how will your body react to pregnancy and birth untill you get there.
Good luck !!!
Diagnosed with Crohn´s in 2005, 3 surgeries, . Pentasa 2x2, Budenoflak 1x2, 30 yrs old mother of two. Boy 05/2005 and girl 03/2009


PrincessC
Regular Member


Date Joined Jan 2006
Total Posts : 21
   Posted 1/15/2010 9:17 PM (GMT -7)   
Hi there!
I have read all of the posts and I just want to share my story with you in hopes that it will provide those of you trying to conceive and wanting to conceive the hope that it can happen.

I have had two healthy boys in the past three years. I breastfed the first one for a year and the second one for 10 months (I did not discontinue either time due to Crohn's issues).

I had both babies vaginally (the good old fashioned way) and I had no problems whatsoever during or following pregnancy. I do agree with some of the other statements saying that it is important to be in remission when you get pregnant. This was definitely the case for me.

During the first pregnancy, I took 6MP, Remicade and Asacol. I was a little apprehensive about this but my husband is a doctor and I have a very progressive gastroenterologist (she did an extra fellowship year in IBD only) so they assured me that a healthy mom is the best chance at a healthy baby. When my first son was born, I stopped 6MP so I could breastfeed (it was a no-no at the time) but remained on my other drugs.

Since I was doing fine without 6MP, I stayed on Remicade and Asacol. When my first child was a year old, I found out I was pregnant again! I remained on the drugs throughout this pregnancy. This time, however, I stopped Remicade in the last tri-mester due to some recent data about immunosuppressive effects in infants (my doctor explained that it would be fine to take it if I was flaring, but then I should avoid giving my baby live vaccines for a certain period of time due to potential immunosuppression. This is not seen apparently in breastfed infant because studies show the molecule of Remicade is too big to get into the milk supply). I got back on Remicade two weeks after I had baby #2 and I continued on it every 8 weeks.

I now have two beautiful boys, 2 1/2 and 10 1/2 months old. They are perfectly healthy and wonderful! I know that everyone's situation is different, but I just want to provide my personal story to give hope to those that may be considering pregnancy.

I have had Crohn's since I was 12 years old.I can remember looking my pediatric GI doctor in the eye and asking him: Would I be normal? Will I go to college? Get married? Have kids? He said yes and he was right! I was still a little worried that it would effect my ability to have children, but fortunately, I was able to have two healthy kids (with hopefully more to come).

I wish all of you trying to conceive or thinking about conceiving the best of luck! My boys have brought me so much happiness and joy! I could not imagine my life without them!

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 1/16/2010 8:14 AM (GMT -7)   
Gypsy I agree you should get a new doc. I had three children after I was diagnosed and they are healthy and happy adults today. Good luck!
Gail*Nanners* Co-Moderator for Crohns Disease & Anxiety/Panic
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*
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