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Wait for remission to get pregnant?

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Ulcerative Colitis
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Posted 3/16/2011 4:11 PM (GMT 0)
My husband and I had decided we would begin trying to conceive. Then, I was diagnosed with mild to moderate UC. I've been tapering Prednisone and I'm not currently on any kind of 5ASA drug...my bowels are mostly normal and my symptoms consist of a little soreness but I think I am definitely on my way to full remission. It is necessary for me to be in complete remission before trying to get pregnant? I know that 33% of women stay the same, 33% get better, and 33% get worse during pregnancy...so is it necessary to wait? I have heard both opinions so I would appreciate yours as well!
Posted 3/16/2011 4:24 PM (GMT 0)
I don't know the medical answer to this but I personally probably wouldn't wait because like you said, you don't know how pregnancy will effect your UC. You may get better or you may get worse, you may stay the same. It sounds like you're pretty stable right now, If you said you were doing terrible, I would say wait. What dose of prednisone are you on? I relapsed at 5mg...
Posted 3/16/2011 4:34 PM (GMT 0)
Hello! My husband and I were also looking to become pregnant when I was diagnosed with UC in December. I have had multiple discussions with both my OBGYN and Gastro doctor and have come to the conclusion that it is not a good idea to try and become pregnant with active symptoms. This should be a decision you make with your doctors. We chose to wait because when you have active UC your body is unable to absorb all of the vitamins and minerals needed during pregnancy. Also, some prenatal vitamins have stool softeners in them which may worsen your symptoms. This is a decision we made to together to wait and you are correct with your 33/33/33 breakout. It may not harm you at all but I would just be concerned about the inability of your body to absorb vitamins and minerals.
Posted 3/16/2011 5:02 PM (GMT 0)
If you are tapering pred, why are you not on any maintenance meds? They are important for maintaining a remission.
Posted 3/16/2011 5:19 PM (GMT 0)
My gastro tried me on Lialda...twice...neither time my body took very well to it... I am nervous that once I'm off Pred, that it's only a matter of time before I flare. But I am trying to think positively! I see him again on Tues. What are my other options if my body isn't responding to the Lialda?
Posted 3/16/2011 6:11 PM (GMT 0)
Hi there

I've had uc since I was 14 in 1979 and have had 3 pregnancies at age 25,27 and 30 and different experiences with each. I was in remission when I fell pregnant each time as in my twenties my uc wasn't as bad as it became in my late 30's early 40's when my periods of remission stopped.

The first pregnancy was fine but I flared after giving birth, the 2nd I flared at about 8 weeks and my doctors had a lot of trouble getting it under control (although this was back in 1992/93). I spent a lot of time in hospital and had spells of liquid diets and low dose steroids to try and calm the flare and a blood transfusion for severe anaemia. My third pregnancy was flare free, I was extremely well, gained loads of weight and afterwards I was fortunate to have a very long period of remission of about 6 years. I really am typical of the 33% theory!

All of my babies were healthy and good weights even the 2nd one who was 3 weeks early. Ideally you give yourself a better chance if you start from remission but in my experience babies are much tougher than people give them credit for and what I found was that although I was really quite ill during my 2nd pregnancy my son didn't suffer any ill effects from either the flare or the treatments I received.

I am surprised that your doctors haven't got you on any maintenance drugs. I have taken salazopyrin since I was diagnosed and continued with it through pregnancy as my doctors assured me it was safe for the baby.

I really hope you get into a good remission and enjoy a happy and healthy pregnancy. Try and put your trust and faith in the doctors caring for you as mine were wonderful and kept on reassuring me that all would be well.

Carol
Posted 3/16/2011 6:16 PM (GMT 0)
If you aren't responding to Lialda, your GI may try another 5ASA or start bringing out the big guns like 6mp.

I was diagnosed in 08. I asked my GI if I would ever be able to be pregnant again. He said not get pregnant any time soon b/c I was flaring so badly at the time. Once I was in remission it would be OK. I ended up pregnant less than 2 months later (it was honestly a surprise). I was one of the lucky women that got BETTER while pregnant. I cannot tolerate 5ASA's but still took fish oil and probiotics while pregnant.

I would get your GI's and OB's opinion. Good luck!
Posted 3/16/2011 6:18 PM (GMT 0)
Thank you, Carol. That is encouraging. My doctor had only tried me on Lialda, but nothing else as of yet for a maintenance drug. My body didn't respond well to Lialda. Hopefully we can find something else that works! Thanks for your thoughts!
Posted 3/16/2011 6:25 PM (GMT 0)
If you may not tolerate 5ASAs, I would wait to get pregnant until you see how you feel after you finish your course of prednisone and figure out what you will use to maintain remission. It is possible that pregnancy causes your UC to go into remission. I have on friend who hasn't flared since she had a child 4 years ago. She does get a little unstable here and there and is able to treat with enemas.

Maybe you could treat with 5ASA enemas when you're off prednisone?

What dose of prednisone are you on?
Posted 3/16/2011 6:42 PM (GMT 0)
I'm on 25mg now..down from 40mg for 12 days... now I decrease 5 each week...
Posted 3/17/2011 1:10 AM (GMT 0)
Hi there,

I didn't respond well to Lialda either, and so my doc put me on Sulfasalazine, which is the oldest form of the 5-ASA drugs and it seemed to help. Now I am on Apriso(once a day, which is why I like it) and though I did flare recently, I don't really think it had to do with the Apriso, just that my body needed more than a 5-ASA drug to get out of a flare.

Regarding a pregnancy, I would wait until you are definitely in remission--if you are tapering off of Pred, you are still kind of in a flare, and you are feeling better because you are on it. I also have flared as I tapered off Pred. I had two pregnancies with UC, one not so good and one fine, so who knows. I will say though that before my second pregnancy, I worked really hard to stay healthy through diet and waited as long as possible after a flare(9 months) to get pregnant, and that was the easy pregnancy.

Also, look into the safety of taking Prednisone during pregnancy, I think I read somewhere that taking it in your first trimester is less safe for the baby than if you need to take it later during a pregnancy(which I did, all my 2nd trimester and my daughter was fine). UC meds and pregnancy(and later breast feeding, if you decide to) is a whole other conversation, but start to look into that just so you have an idea of what you are getting into.

Good luck!
Posted 3/17/2011 1:52 AM (GMT 0)
Jumping in from the crohn's board. I have crohn's colitis and 3 babies. All after my dx. I got pregnant with #1 & #3 while coming out of a flare. Symptoms were still present, but subsiding. I went into remission from the pregnancy and felt great. I know this isn't always the case, but if your docs are monitoring you and you are mostly well - then I would go for it.

Stef
Posted 3/17/2011 9:51 AM (GMT 0)
I had ongoing UC symptoms when I got pregnant and about ohhhhh 3-4 months into it and went into remission while being pregnant. My GI said that it's common for that to happen, but can also go the the way! I was also on Pred while I was pregnant for 8 weeks and had the moon face, but I didn't care, I was pregnant and had an excuse. It goes away.
Posted 3/17/2011 10:05 AM (GMT 0)
I'd personally wait unless you are over 40 years old and running out of time.
Posted 3/17/2011 2:47 PM (GMT 0)
If you are symptom free and feeling well, then you should be ok. I agree though that the question of how your remission is to be maintained needs to be answered first. Prednisone can cause some complications in the first trimester (though I'm not sure how much more likely they are versus the general population), but is relatively safe later in pregnancy if it's needed. I took a course early in my 3rd trimester and my little guy is just fine.

Good luck to you! Don't give up on having a baby...it can definitely be done with good medical care and monitoring.
Posted 3/17/2011 4:55 PM (GMT 0)
I took pred for all 3 of my pregnancies. No complications for me or babies. The worst possible complication I've read about is cleft palate. It can happen if you are on HIGH doses and the palate forms between weeks 4-7 of the pregnancy - so it's at the very beginning. I've only read about it, but I have never heard of anyone having this complication at all. I'm pretty sure the risks are low to none as long as your dose is pretty standard.
Posted 3/17/2011 9:27 PM (GMT 0)
What dose of prednisone are you on now? For most people once they get down to around 15mg they have a good idea as to how their colon is going to handle getting off the pred. :o)
Posted 4/2/2013 3:33 PM (GMT 0)
I know this is an older thread but I'm glad I found it.

I was diagnosed with UC when my last baby was 7 months old last year. Symptoms started when she was 3 weeks old.

Went into remission for 3 months, then started up again and fell pregnant 6 weeks later. I had NO idea you weren't recommended to try for a baby during a flare... We weren't even really trying, just seeing what would "happen".

Doctor took me off Asacol at 5weeks (due to possible risk to baby) and I ended up having a missed miscarriage at 12weeks (baby's heartbeat stopped at around 7.5 weeks but I didn't know for a month). It coincided with the flareup getting worse (at about 6.5 weeks) so I personally think (believe) the flareup and not being on meds caused it. Have no proof just my mother's instinct. (Genetic testing showed no problems).

Since the pregnancy ended with a DnC two months ago and I am now 40 I really really really want to go into remission and try again. Current flareup has been getting to the chronic stage since the DnC and wasn't  responding to asacol or predisone. New doctor put me on a double dose 120mg of pred last week and I am finally seeing some improvment and massive lessening of severity. Can't live on predisone forever though. (Am also taking almost maximum Asacol).
He was also talking about putting me into hospital for IV antibiotics if this doesn't work?

Everyone seems to say to wait to try for a baby, but after reading your posts tonight, I think if I can get through this current predisone stage quickly I'd like to go for it. Last chance!!!  Staying on the asacol while pregnant would make me feel safer after what happened last time. It's funny though, the doctor and nurse at the medical centre were both quite resistant. 
I would rather consult a GI if there is a next time.

Posted 4/2/2013 3:51 PM (GMT 0)
I talked with my doctor about this issue, not because I'm trying to get pregnant, but because this flare has been so difficult to get under control that I'm worried about what will happen when I'm in my early 30s and start trying to have children with my partner.

What I was told was that you can definitely get pregnant and get through a pregnancy unscathed while flaring, but that it's harder to get a flare under control while you're pregnant, and you do run the risk of more complications later in gestation (e.g. early labor). However, you should be able to stay on Asacol while pregnant.
Posted 4/2/2013 6:36 PM (GMT 0)
Hey SciGirl, I know you're on Remicade now, which I believe is Category B for pregnancy. My GI tells me that Cimzia has been studied more extensively in pregnancy and is considered extremely safe -- perhaps when you start thinking about getting pregnant you might check with your GI about switching. Which is not to say that you can't be on Remicade during a pregnancy, just that there is more definitive evidence about the safety of Cimzia, so my GI prefers it for women of childbearing age.
Posted 4/2/2013 7:21 PM (GMT 0)
I've read extensively about UC drugs and pregnancy and have spoken to many consultants about it. Would love to get pregnant again, but don't want to do it whilst flaring.

My take is:
- do everything you can to get off pred and be in a stable remission before you conceive. Pred is associated with deformities (e.g. clef lip) in the first 12 weeks and (temporary) gestational diabetes if you take it in the last trimester. I've known two friends go through pregnancy on 20mg and both had relatively small, early babies.
- 5ASAs are safe so max out the doses here if you need to; 6MP/AZA aren't too dangerous (there is a cochrane report on this); remicade/humira more untested.
- Flares pose a serious risk to your baby, so at the tiniest spot of blood or mucus get on the enemas (even with pancolitis they can usually delay the need to use pred for a while).
- If you can't get a flare under control then go for the pred... the later in pregnancy the better.
Posted 4/2/2013 7:24 PM (GMT 0)
Thanks for your replies. Good to hear others have had these discussions and think the same.
Posted 4/2/2013 7:59 PM (GMT 0)
I would suggest try to come off steroids and then start trying. Also will agree with others stay on maintenance drugs.... it will keep you in remission.
Posted 4/2/2013 11:27 PM (GMT 0)
i had my baby in june 2012. i had just gotten out of a flare when i got pregnant. my pregnancy went great, no symptoms whatsoever and i could eat whatever i wanted. if i could feel like this everyday lol i would always be pregnant. but 1 week after giving birth i was admitted a the hospital for 1 week for a really bad flare up. we are now in april and im at my third flare up since giving birth and having a hard time getting it under control even on pred. so i am starting remicade in a few days so hopefully that will put things under control.
Posted 4/2/2013 11:43 PM (GMT 0)
I was flare free for a while, but my GI wanted to check anyway with my yearly colonoscopy (20 years with UC) because she recommended that I be in remission before getting pregnant. I was scoped in Feb and pregnant in the next ovulation cycle! baby born in Dec last year and stayed in remission the whole time. I had some explosive diarrhea after the unexpected c-section, but otherwise everything was great. I'm kinda happy about that because most people complain about those first post baby poops being hard to get out and very uncomfortable. Not mine!
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