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Crohn's Disease
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Posted 6/16/2011 6:51 PM (GMT 0)
My main question for those with CD while pregnant is how healthy were you when you got pregnant?  Total remission?  Or just feeling better and having less symptoms?  Did you talk to your GI doctor prior to getting pregnant?  And did you see a high risk ob-gyn for the pregnancy? 

I've been feeling great, but my GI doctor is being very cautious about me trying to conceive.  I know that a healthy mom = a healthy baby and I don't want to risk anything, but have been a bit frustrated by my doctor on this.  She told me that she wanted to see six months of good blood test results before giving me the OK, but I've had almost 4 months of good test results (and have not had symptoms/urgency in over a year and no pain, nausea, etc for even longer) but she still hesitates every time I ask about it.  My last colonoscopy was clean and my last SBFT showed a tiny patch of narrowing, but it looked more like scar tissue than active disease...so I don't know why she is hesitating and she is great at talking in circles when I ask a direct question.

 

I just can't tell if she's being overly cautious for no reason, or if I should continue to wait before trying.  I'll be 33 next month so I feel like there's not much more time to waste!  Thanks for any insight/info on this!

 

  

Posted 6/16/2011 7:41 PM (GMT 0)
When I got pregnant the second time I was in full flare mode (20+ all bloody bm's a day) and we found out about the pregnancy a month after my UC diagnosis. I was immediately put on prednisone (highest we went was 20 mg) that helped settle things down some. We were worried of a miscarriage just because that pregnancy was not exactly planned, otherwise we would have waited a while. I flared in varying degrees the whole pregnancy, I was on Lialda and prednisone through out. I was regularly seen by my GI every 4 weeks until she was born, he took over the main care until I was past 24 weeks. After that my CNM took over my pregnancy care (I still had my regular appointments with them through the 1st and 2nd trimester) When I took my glucose test I failed both, and had steroid dependent gestational diabetes. At first we tried diet, then glyburide, then went to insulin (which barely kept my levels down, prednisone is a stinker during pregnancy!) I also had 2 Non Stress Tests a week and received many ultrasounds. I dislocated my knee a few days before delivery (again thanks to prednisone and pregnancy tends to make your joints softer) When I had my NST at 36 weeks she wasn't responding so they did a bio physical exam, she barely passed it and so with my previous history of a still birth and with the UC and with the diabetes, the dr's decided it would be best if we induced. She was healthy at 6lb12oz. She had to be on the cpap for a couple hours and had bad jaundice for a month but then was just fine.

I was considered high risk for various reasons: stillbirth at 32 weeks, UC, diabetes. So unfortunately I will still be considered high risk for all my subsequent pregnancies. CD doesn't have to make you high risk, I just had other circumstances accompany it.

Now my daughter is 20 months and we are wanting to start trying again in the next year, but since I started flaring again we have to wait until I'm symptom-ish free and labs clear for 4-6 months. I would ask your OB/GYN about it and see how they feel. Since you've been symptom free for quite a while I don't see why you couldn't start trying, but that is just from my stand point, make sure your dr's are on board. Good luck!
Posted 6/16/2011 8:24 PM (GMT 0)
Have you been pregnant before? If so, that experience should inform your current decision. If you went into remission during pregnancy, or stayed in remission, you are likely to have the same experience IMO.

If you have not been pregnant before, the odds are about 30% that preganncy will cause a flare. I'm not certain what the duration of your current remission has to do with that risk - I would push on your DR to answer that question.

If your iron stores are low, she may be anxious about getting your nutritional status up to a higher level before you begin a pregnancy. Personally, I agree with you and would not wait. It is likely that you will not conceive immediately anyway, so what's the harm in starting to try?

Oh, and I suggest you start your pregnancy with a regular OB.  You can always move up to a high risk if your status changes during pregnancy.  Of course, if you've had surgeries or know of strictures/scarring/fistulas, that would probably change the decision.

I started experiencing symptoms of IBD after the birth of my 1st daughter.  I got pregnant with my 2nd daughter 18 months later; I was not in remission, but pregnancy did improve my bowel function.  My illness flared after my 2nd daughter was born.

Posted 6/16/2011 9:14 PM (GMT 0)
I worked with my GI for the permission to start trying as well. I was not in a flare when I became pregnant and had a wonderful pregnancy.  I was considered high risk due to age and my crohns history.  I would give it the 2 more months your Dr suggested and then try.  I might add that I don't know that any Dr will be happy to tell you to try due to medical law suits and all that, but if you feel well enough and you look good in lab work, then choosing to proceed is a personal decision you will have to make.
Posted 6/16/2011 10:49 PM (GMT 0)
I was undiagnosed when I got pregnant the first time, although I had had symptoms for the previous 9 years off and on. I felt really good while pregnant, Crohn's wise, though I did end up with pre-eclampsia and in the ICU for 4 days after delivery. Not sure the CD had anything to do with that. Just about a year later I was diagnosed (Same thing happened with my mom). When I got pregnant the next time, I was off all medications and felt great again. I was able to eat things I hadn't eaten in a long time. But the rebound flare was a killer. After that my doctor asked me how many kids I wanted, when I said I wanted 4 but my husband wanted 2, his response was 2 is enough for you. My body didn't like being pregnant after the fact. Just be aware of your body and don't ignore symptoms.
Posted 6/17/2011 5:26 AM (GMT 0)
I was in total remission (no inflammation even with a biopsy) both times. My pregnancy with my daughter was a dream!!! I've never felt so great and energetic. Became pregnant again when she was a year. I was still in remission. It was a great, easy pregnancy but I didn't get the amazing energy boost. I also worsened my stricture by skipping meds some the second time (I was being cocky). I did not require a high risk doctor.

I know it's frustrating to wait, but I understand your doctor's caution. You need to be healthy both to carry the pregnancy and to care for baby later. Sounds like you should have the green light for a June baby soon, which is a great time for a little one. :) Do what you can to be in tip top shape and then STAY ON YOUR MEDS!!! That last is personal experience talking.
Posted 6/17/2011 5:31 AM (GMT 0)
And I can add that my GI was super supportive to give me the go ahead when I cleared all of the tests. He currently thinks I'm crazy to still want more, but supports me in doing it once my structure's taken care of.
Posted 6/17/2011 7:09 AM (GMT 0)
I am glad you asked this question. I too have been wondering the same things. I asked my doctor last week how long he recommended I wait to have children. All he said was the longer I was in remission the better. So I said "so, like 1 year, 5 years, or should I adopt?" He laughed and said we will revisit the situation when I am ready, the the know-it-all intern that was with him was trying to provide me genetic counseling telling me there was a possibility I could pass Crohn's on to my kids. I know there are many people out there who have Crohn's who have had normal pregnancy outcomes and their children are perfectly healthy. I guess I am just trying to stay positive all while staying realistic.....
Posted 6/17/2011 11:42 AM (GMT 0)
Sorry but after the last post I just have to say this. It is lunacy for the know it all intern to hand you a pamphlet on genetic counseling. Would he/she have done the same for someone with heart disease, diabetes, some forms of cancer, or any one of the hundreds of things we could pass on to our kids. I am the child of a Crohnie and the parent of 2 girls who may or may not some day have CD. But they may also get the heart disease, bipolar disorder or AS that their other 3 grand parents had and their father and I have the genes for. We all pass on the good and the bad. If every person who had any disease wasn't allowed to have kids, the population would drop drastically.
Posted 6/17/2011 1:48 PM (GMT 0)
Thanks everyone so much for your advice and information! I'm going to keep working on me for now and make sure I'm doing all I can to get my body as baby-ready as possible :) My ob-gyn did recommend that I meet with a high-risk doctor just to discuss meds and to make sure my previous resection surgery won't cause any complications, so I'm going to schedule an appointment there for a few months from now.
I know that doctors always worry about lawsuits and my GI doctor is always cautious, and I'm usually OK with that, but it is frustrating to be told to wait when you are feeling really good!
My husband and I have also discussed adoption and surrogacy, so I know one way or another we will be able to have the family we want some day!

Oh - I also had a doctor recommend genetic counseling and just kind of stared at them like really?!
Posted 6/17/2011 8:16 PM (GMT 0)
Hi, I was diagnosed with CD during my first pregnancy-felt ill, had severe inflammation showing in blood results, doc thought it was my appendix but during surgery they diagnosed CD. I was quite bad after birth, didn´t start my meds untill 6 weeks PP.
Second pregancy was planned with my GI consent- 2 years of waiting untill my Crohns was under control, then surgery to remove narrowing which was potentionally dangerous if it caused blockage during the pregnancy, 6 months of recovery after the op, then we were allowed to try getting pregnant, took us another 6 months.
Third pregnancy was unexpected, luckily I has no problems in second and third pregnancies, have a healthy 8 week old baby girl now.

If there are no problems you know of and GI would not give you a straight answer, I would not wait longer. Good luck!
Posted 6/17/2011 8:26 PM (GMT 0)
Oh, with the genetic counselling-not that bad idea, I had blood test done in second and third pregnancies as the illness causes your cells to deteriorate, including your eggs. Normally, the number of "faulty" cells is between 3-5%. So they take your blood and do the test, find for example that percentage of damaged cells is much higher which could mean a low chance of having a healthy baby. Then you could decide to adopt and not risk this.
Luckily, my numbers ere allways in the range of what is considered as normal.
It has nothing to do with the possibility of your chindren contracting CD (at least the genetic tests done here, I am not in the US).
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