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Pregnancy - Crohn's medicines - Public's opinion

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Posted 3/8/2009 5:33 AM (GMT 0)
OK, so you want to get pregnant or you are pregnant.  You're taking your Crohn's medicines like your Dr's want you to (GI doc, OBGYN, etc).  Everything seems dandy and then someone freaks out about your meds (a co-worker, a pharmacist, etc) and your baby's health. 

How do you deal with the unnecessary need to explain yourself?

I took asacol and 6-MP with my son 2 years ago.  We plan on getting pregnant again this spring and I will be on pentasa and remicade. 

I should just confidently trust my Dr's, but it's hard to deal with some people!

Posted 3/8/2009 5:47 AM (GMT 0)
aidy, being a guy i dont know what i would say.. really you dont have to say anything... i would suspect that people fear what the drugs could do. anythings possible. its your choice. personally, i would not get pregnant while taking some of these drugs we take,as the time for study is not that long. but thats me.. it is my understanding that a womens eggs are already all made by a certain age so no problem there, it would just be with the developemnet angle. wheras a guys little swimmers are made daily and may be at a greate risk for abnormalities from outside stimuli. i would ponder though, that a pharmacist may have more insight into the actual chemical makeup of the drugs than the dr, and therefore would be more concerned knowing whats in the stuff vs. just the dr going by what the reps tell him.
Posted 3/8/2009 11:52 AM (GMT 0)
Hi I guess my thoughts are it is your child and the decisions you make ,are decisions you live with.. so if that is your choice then worrying after the fact does not do much good.. I really don't know how I would cope as I will not be in that postion..thank goodness..there are so many pros and cons for big decisions, that it is a personal choice..lol gail
Posted 3/8/2009 1:06 PM (GMT 0)
I think it is more dangerous for you and the baby to go through pregnancy while flaring then taking some meds and be in good condition..

You don't need to explain your's decisions to people but i would tell people that..
Posted 3/8/2009 2:16 PM (GMT 0)
Pregnancy (and childrearing for that matter) is a hail mary pass no matter how you look at it. The best thing is to do all your research and then make your decision.

I think no one wants to have surgery while they are pregnant...so it is another thing to take into consideration.

Posted 3/8/2009 2:29 PM (GMT 0)
It is more dangerous for the baby if you do not take the meds because a flare up would do more harm than the drugs. You could tell people to mind their own business and not make judgements when they do not have all the info, but that could cause a lot of unnecessary stress and drama! Really, why do people think they have the right to judge??? The reality is there are no guarantees about anything in life, we all have to make the best decisions we can with the information available to us. With our disease, there is a chance of harm to the fetus whether we take drugs or do not take drugs, so each of us has to make the best decision we can based on the extent of our own disease, our own other health issues and personal values. The only guaranteed way not to harm the fetus is not to get pregnant at all, but then people call you selfish for not wanting to have kids! (I have decided not to have kids and at the age of 30 I am still dealing with people shaking their heads and telling me I will change my mind or telling me I am selfish, they just cannot wrap their heads around my decision.) If you are on remicaide you have likely had a pretty rough go of things, so I say make the decision that feels right in your heart and don't worry about what others think. You know you are doing the right thing and that is all that matters.
Posted 3/8/2009 6:17 PM (GMT 0)
I just had a baby after being on meds, I didn't get many comments. Anyone who knew about the DD or knew i was taking the meds, knew that I took the decision to take them seriously and made an educated choice. Co-workers/others didn't know and it wasn't their business. As for the pharmacist, they are probably just trying to make sure you are aware of the risks and trying to avoid liability. It's their job so I don't mind that. Mine just called me aside once and told me the risk category and made sure I knew it. He didn't say anything again.
Posted 3/8/2009 6:23 PM (GMT 0)
I haven't been in your position (no kids yet and don't really plan on having any) but I would just politely say "thanks for your input, I'll take it under advisement." It just shuts people right up. No need to defend yourself or tell them you disagree and end up in an argument. It means you heard them and and you are all set.

Sassy - I am 27 and also hearing "you will change your mind." No one has called me selfish yet. But, I am choosing to have a lifestyle that is not really suitable for raising kids. Wouldn't it be MORE selfish to have a kid "Just cause I am supposed to" and then never be home to take care of said kid?

I agree that I may change my mind but my choice is definitely responsible more than it is selfish.
Posted 3/8/2009 7:17 PM (GMT 0)
Thanks for everyone's input.

I would definately prefer to not take any medications (pregnant or not!), but it does seem like more of a gamble to have a flare while pregnant. I even gave birth med-free!

I had virtually no problems with my Crohn's for 8 years until my baby was 8 months old when I flared. I went off of 6-MP in order to breastfeed (which I did for 10 months). I started losing weight while nursing, and ended up 10 lbs lighter than pre-pregnancy (probably a combo of burning calories from nursing and not absorbing nutrients due to crohn's). It just seems apparent that while trying to 'grow a baby', or 'nuture a baby', that my meds are important.
Posted 4/6/2009 5:09 PM (GMT 0)
I just found this post as I am looking into information on pregnancy and IBD and 6MP. I have been on 6MP for six years. It helped me to stabilize after I was having flares, even after a total colectomy. I was on 75mg for about three years, then a doctor ordered genetic testing and it showed high risk of liver toxicity and low response rate, she wanted to take me off. But I consulted with a friend of the family gastroenterologist and he said I should stay on. So I compromised and went down to 50mg. I have been completely stable and it has been about 2 1/2 years that I have been on 50mg. I have no signs of Crohn's even, recently my doctor changed my diagnosis back to UC because she found no signs of inflammation at all in my small intestine through the capsule endoscopy. The most recent proctoscopy showed no evidence of Crohn's or colitis in my rectum as well. Btw, I credit VSL#3 and lifestyle changes, including diet, for getting me well at least as much as mercaptopurine. Anyway, so now I am 35 years old and trying to find as much info as I can on 6MP before getting pregnant. I have heard the same shpeal as Aidy from the docs, about it being the best thing for the mother to stay healthy. But I think that if there is no active disease, it is hard for me not to at least think about lowering the dose further now and if I see any signs of active disease at all, then going back to 50mg. Aidy, if possible, I would like to know how you went off of the 6MP while you were pregnant so that you could breastfeed. Thanks!

-Diagnosed with UC in 1997 then Crohn's colitis in 2001
-Have been taking Asacol since 1997, 6MP since 2003
-Had a colectomy in 2002
-Currently taking VSL#3, Asacol, and 6MP
-Stable for four years
Posted 4/6/2009 10:11 PM (GMT 0)
If you are feeling a bit snarky...."I'll give that the consideration it deserves." In a tone that makes it clear it deserves NO consideration.

Of course your medications are important!
Posted 4/6/2009 10:22 PM (GMT 0)
Eshy, I was in your position and went off 6mp no problems. It is a tough decision though. I went off before trying to conceive and did blood work to make sure things stayed okay. I've been off 6mp about 2 years now (baby and breast feeding) and don't plan to go back on til I have to. I am still on maintenance meds. Pentasa is enough for me now. It wasn't before.
Posted 4/6/2009 10:56 PM (GMT 0)

Eshy-

I was on 6MP for about 3 or 4 years.  Even way before I was planning to get pregnant I asked my Dr. if I could get off of it since I was doing so good and his response was: 'You're doing good because you're on it!'.  ....I'm no Dr., there are of course pros and cons on this.  So anyway, I stayed on it, got pregnant, had a freakishly easy pregnancy and I stopped the 6MP around 36 weeks.  I felt no different - it's not like I woke up the next morning and could tell I quit taking it. 

I was just taking Pentasa while nursing.  The baby was born in June and around Christmas time it seemed like I was losing a lot of weight, but I still felt fine.  I flared up in Feb. (nausea, vomiting, stomach aches) and they gave me some prednisone for a month and that was it.  didn't run any tests or anything.  they told me it was up to me on how long i wanted to nurse.  they were understanding that i really liked nursing and it was beneficial to the baby, on the other hand it'd probably do my body good to be done w/it.  i quit nursing in april (?) and just continued taking pentsa only.  then in july i had another flare up and that's when my new dr. (my old one just moved too far across town for me) ordered a few tests and found lots of fistulas and started me on remicade.  i've felt great ever since. 

i hope to get pregnant again this spring or summer. i will stay on remicade during pregnancy.  i'm pretty adement on nursing again, so i'll take my chances.

good luck!

Posted 4/6/2009 11:14 PM (GMT 0)
Here's my opinion....all of us here decide what's best for ourselves. If it were about a "normal" person without crohn's, of course you wouldn't take about anything besides Tylenol. But with this disease, a lot of it is finding a medicine that works for you and mantaining remission. If I was on a medicine and not having problems, I would want to stay on it myself. If that meant being pregnant and being on medicines that typically a OBGYN would have you stop, that's how I would go. Even things like prilosec are typically stopped for the "normal" expecting mother. However, my GI told me that if I were pregnant I would not have to stop prilosec because my reflux would be so bad that I wouldn't want to eat, and that would be bad for the baby. (At one point I thought I might be pregnant and talked to my GI about the meds I was on at the time)

Ideally, all of us would be able to go off all medicines to be the safest thing for a pregnancy, but that's not reality when you have a disease like CD. Like someone said, you don't want your Crohn's to flare and require surgery, or leave you malnourished, because those things as well are not good for pregnancy.
Posted 4/7/2009 2:54 PM (GMT 0)
Thanks for all of your suggestions and comments. I appreciate it! I am glad to know people can go off of it and stay stable for a while. So, here is what I am thinking... When I first went on 6MP I was in a really bad place. I had been hospitalized 7 times, including surgery. I was terribly allergic to remicade, which is why that is not an option. Now I am in a completely different place with no signs of inflammation at all. I had the calprotectin test done in November and my level was completely normal, indicating there really is no more inflammation in my intestines than a person without IBD. There is no way I can know for sure what the contribution of 6MP is to my wellness until I lower or go off of it. And actually there are some other considerations as well since I have a history of precancerous cells in another part of my body that have led to another chronic condition and the immunosuppression is keeping me from recovering from that condition and also leaving me more at risk for precancerous cells. The docs rarely tell us that we are actually at higher risk for certain types of cancer (melanoma and vulvar cancer) because of 6MP. Of course we are at higher risk for intestinal cancer because of the IBD, especially with a lot of disease activity, which 6MP can help reduce. It is always a cost/risk vs benefit issue. What is the risk of flaring if I go off of 6MP? It is unknown, I can only go by my history and that gives me limited info. 6MP helped me stabilize and kept me from being hospitalized as I only had some mild flares the first couple of years after starting it. Though, once relatively stable, I really think that the two things that brought me to being IBD-free were changing my diet to avoid foods that caused me cramping and diarrhea and taking two packets of VSL#3 every day. Stress management has played a major role as well. I know stress does not cause IBD, but it does exacerbate it and I have found a number of published articles that refer to the autonomic nervous system in IBD patients, mostly showing that IBD patients have more sympathetic nervous system activation (that is the part of the nervous system that is aroused when we are stressed) than normal people (I study psychophysiology). So I have changed my lifestyle to keep stresses to a minimum when possible, I have learned to really listen to what my body needs and I really think that my wellness comes from a balanced approach to wellness, not just the 6MP. I think the decision to lower or go off of 6MP -- for me -- goes beyond being pregnant/breastfeeding or not being pregnant/breastfeeding, though certainly I would like to breastfeed for a short time at least. I ask myself: Do I want to be on this medicine for the rest of my life? How much do I want to put up with the secondary chronic condition that 6MP has led to? What kind of risks am I okay with? What kind of risks are too much? Again, thanks to all for your comments and helping me to think this out. I will let you know how things go.


-Diagnosed with UC in 1997 then Crohn's colitis in 2001
-Have been taking Asacol since 1997, 6MP since 2003
-Had a colectomy in 2002
-Currently taking VSL#3, Asacol, and 6MP
-Stable for four years
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