Starting Remicade...no Baby!

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descrapster
Regular Member


Date Joined Jun 2007
Total Posts : 155
   Posted 8/23/2007 1:10 PM (GMT -7)   
Well I went back to my Colo-Surgeon yesterday because my Fissures are as bad as they have ever been in the last 4 months of having them.  She wants to put me on Remicade(so does the GI) but she told me not to try and get pregnant! =:::(
Not what I wanted to hear.  She just said that there are no human studies to report what the long term effects on the baby would be & in her opinion it is not something I should risk.  I agree and I would never want to put my baby in harms way but we were already trying and it sucks to have to stop especially not knowing how long I will be on this medication for.  My intestinal inflammation is under control it seems since I don't have pain or D anymore but now I need to take care of the fistula and 2 fissures and since surgery is not an option, this seems to be the only way to go!  We just really wanted to get pregnant by the end of the year and I feel like my heart has just been thrown for a couple of loops!
Descrapster
Diagnosed with CD June 15, 2007
Currently 2 Fissures and 1 Fistula...YAY!
3 Lialda/day
Had to stop Flagyl because of numbness in my toes!
Seton Drain currently in...


Stef17
Veteran Member


Date Joined Feb 2003
Total Posts : 1811
   Posted 8/23/2007 1:41 PM (GMT -7)   
Wait a minute... did she tell you not to get pregnant because of the fissures? Or because of the remicade? If it is because of the remicade then I suggest you seek a 2nd opinion. I am only one of a few ladies on this board who have had healthy, perfect remicade babies. I've had 2 and we're working on #3. I understand your doc's conservative approach, but I can tell you that my GI in Miami is part of a large research team and he told me that remicade is considered relatively safe (pregancy category B, I think) and that the latest studies show that it doesn't cross the placenta until about 30-32 weeks into the pregnancy. I am not a doctor, but I have had 2 babies successfully and I would tell you that if it's because of the remicade...that should not be a reason for you to stop. If she wants you to take the remicade for a while to let the fissures heal up, then that is understandable, but I wouldn't give up your dream because of the remicade. It IS possible to take it and have a healthy baby. In fact, I have yet to hear of anyone whose baby had complications due to remicade.

descrapster
Regular Member


Date Joined Jun 2007
Total Posts : 155
   Posted 8/23/2007 2:09 PM (GMT -7)   
She said no because of the Remicade. She says that even though women can and have had normal pregnancies and babies there is no proof of the long term effects on the baby. I definately want to talk to my GI about this. I left that office yesterday in tears. Do you mind if I ask the name of your Dr? I recently moved to Naples from Miami and am so dissapointed in the doctors here! I felt like I had so many more options and opinions in Miami. I do want to give this drug a try and see if I can get the fissures to heal before I have a baby just because of the pain but I never thought I would have to completely stop trying. I want to do a little more research and especially now that you have told me about it not crossing the placenta until 30-32 weeks and take it to my OBGYN. You don't know how much better you have made me feel today, thanks!
Descrapster
Diagnosed with CD June 15, 2007
Currently 2 Fissures and 1 Fistula...YAY!
3 Lialda/day
Had to stop Flagyl because of numbness in my toes!
Seton Drain currently in...


petittarte
Veteran Member


Date Joined Apr 2006
Total Posts : 686
   Posted 8/23/2007 6:10 PM (GMT -7)   
My doc told me that if I want to get pregnant she would leave me on Remicade but take me off the 6mp.
Jodi

Remicade and 6MP


FitzyK23
Veteran Member


Date Joined May 2005
Total Posts : 4219
   Posted 8/23/2007 6:18 PM (GMT -7)   
I think one of the concerns is that although lots of people have had healthy babies, the drug hasn't been around long enough for these babies to grow old and find out if there are any later in life implications, particularly in puberty. However, if no one has babies on rem we will never find out. I guess its hard to think of ones own child as a guinea pig but the only reason the medical field has progressed the way it has is because of the trail blazers willing to give something a try. Follow your heart, make educated decisions, and leave the rest to God or whatever you believe in.
25 Year old married female.  Diagnosed w/ CD 2 years ago, IBS for over 10 years before that, which was probably the CD.
 
I started getting a ton of junkmail after putting my myspace profile link on here.  Im taking it off but if you want to contact me just email me and Ill give you a link to my myspace.  Sorry!


Stef17
Veteran Member


Date Joined Feb 2003
Total Posts : 1811
   Posted 8/23/2007 7:02 PM (GMT -7)   
I just recently moved away from Miami as well - to podunk Georgia. I know what you mean about options and finding a doc who is up on the latest. The doctor I saw in Miami is Dr. James Leavitt at the GI Care Center in Kendall. I just LOVED him and was so sad to leave him.

I know the "long term effects" are what everyone is concerned about, so this might come off as flippant or arrogant or ignorant, but... if it doesn't even cross the placenta until the end of the pregnancy... then what's the risk? I'm always in remission when pregnant so I can schedule a treatment at 30 weeks and then wait 10 weeks for the delivery and get a treatment immediately after delivery. If your GI and your OB have privileges at the same hospital, then your GI could even authorize a treatment while you're inpatient for the delivery. All he has to do is write the orders.

You need to find a GI who is knowledgeable and can support you in your goal to have a family. I have found that often the GI knows more about remicade and pregnancy than the OB or maternal/fetal med specialist.

crohnie42
Regular Member


Date Joined Dec 2006
Total Posts : 371
   Posted 8/23/2007 7:35 PM (GMT -7)   
sorry, but why chance it?

Michele
~~~~~~~~~~~~~~~~~
 
Female Dx'ed with Crohns Disease in 1992
Been on every med for crohns that exists
Several Fistula surgeries
Dx'ed with Colon Rectal Cancer March 2007
Dx'ed with Stage 2 Vulvar VIN
On Chemo and Radiation for 6 weeks


gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 8/24/2007 3:09 AM (GMT -7)   
Hi Where is your fistula ? I would think your Dr. would want that healed and I cain't suggest you having a baby right now because I don't know enough about your health. Those fistula's are no fun.Sorry she doen't think you should go ahead right now and get pregneant but it might be worth you waiting I don't know. lol gail

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 8/24/2007 6:41 AM (GMT -7)   
gachrons she doesn't have a fistula she has a fissure. Decrapster I really think you should get some other opinions on that no baby thing. There have been so many women on this board who have had Remi babies and Imuran babies and all the babies have been born completely healthy. I would get a 2nd and maybe even a 3rd opinion. Good Luck and God Bless!
Been living with Crohn's Disease for 32 years.  Currently on Asacol, Prilosec 60 mg, Estrace, Prinivil, Diltiazem, Percoset prn for pain and Calcium.  Resections in 2002 and 2005.  Recently diagnosed with Fibromyalgia and doing tests to see if I have Inflammatory Arthritis or AS.


Stef17
Veteran Member


Date Joined Feb 2003
Total Posts : 1811
   Posted 8/24/2007 6:45 AM (GMT -7)   
decrapster - email me at my personal email if you want. I'd be happy to discuss any of my own personal experience with you. You can find my email by clicking on my user name.

Your best bet is to get all the information you can so you can make the most informed decision possible. Then live by faith, not by fear. Good luck in this tough decision!

ginger71
Veteran Member


Date Joined Nov 2005
Total Posts : 722
   Posted 8/24/2007 6:54 AM (GMT -7)   
I started remicade in June and thought I would never have a baby. If it doesn't start working that's probably true because I am not getting better so how could I carry a baby? My main problem is they are not even sure I really have crohn's.......
 
Anyway, I have gotten conflicting answers about this. My GI is very conservative and said no babies-ever. Go on remicade and stay on it because if I go off to have a baby, it may not work again. My OB/GYN said it would be fine, though and she would be looking out for the baby's health. So who do I believe? Plus, there are lots of women on the board who have had remicade babies......
 
I have an appt. at MT Sinai in NYC in Nov. with a Dr. who specializes in CD and women's issues. I am going to wait and see what she says. Not that I don't trust my GI but if I can see one of the top Drs. at one of the top hospitals in the country I am going to try to see if it is safe. I'll let you know. I have been doing a lot of research and there is no real answer,unfortuatley......... sad
Like Fitzy said, there just isn't enough research on long term effects. And I love her last line so I second that point..... :-)
Best of luck with everything :-)
Ginger
36 year old female. Dx'd and undx'd a few times. Was just redx'd again 04/2007.
History of rectal abscesses and fistulas (28 surgeries including abscess I & D, exploratory surgeries, 2 C-ton drains and 1 fistula plug) Count does not include self bursting abscesses.
1st Remicade infusion 6/5/07.  Lots of joint pain, and a new fistula since the 2nd infusion 6/19.
Praying I'll get better soon so we can have a baby.
Ginger :)


MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 8/24/2007 6:57 AM (GMT -7)   
It never hurts to get second, third, and fourth opinions.
Forum Moderator 
I will find a way, or make one.-Philip Sidney
Make sure your suffering has meaning...


descrapster
Regular Member


Date Joined Jun 2007
Total Posts : 155
   Posted 8/24/2007 8:04 AM (GMT -7)   
Thanks everyone!

Fitzy- You are absolutely right. I hope to be one of those trail blazers someday!

Chronie 42- What if I had to be on this medication for the next 3-4 years? I can afford to wait but my Husband is 16 years older than I am...I don't want him having his first baby when he's 50! If I can be off of this med in a year or so then I have no problem waiting but I can't have my life on hold for 3-4 years. If I decide that it is not worth the risk then I won't do it, but I need to make an informed decision.

gacrohns- I have a fistula and 2 fissures. My fistula is right above my butt hole and it doesn't attach to any other organ. It goes from inside the rectum to the skin. My 2 fissures are what is killing me now. I hardly ever remember that I have a fistula. What got to me was that she did not tell me not to get pregnant or wait a while until the fistula & fissures heal before I get pregnant, she doesn't want me to try and get pregnant while on remicade. I would completely understand about waiting until they heal but that is not her concern.

Nanners- Thanks! I do have a fistula but like I said it's not what is killing me, the 2 fissures are! I am going to get a few other opinions.

Stef- I will e-mail you, thanks!

Ginger- Good luck and let us know..hope it gets better for you!

Ok, now that I have typed all of this I feel like it is pointless because I just got a call from my OBGYN's office and I asked about the Remicade and the fact that I have mild cervical dysplacia... they said that the Remicade could effect my Dysplasia and make it worse which means turning into severe dysplacia and possibly cervical cancer. They are counting on my immune system to battle the pre-cancerous cells and an immune suppressing drug would do just the opposite! =( God really wants to test me lately...I am really going to have to send him an e-mail about this!!
Descrapster
Diagnosed with CD June 15, 2007
Currently 2 Fissures and 1 Fistula...YAY!
3 Lialda/day
Had to stop Flagyl because of numbness in my toes!
Seton Drain currently in...


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 8/24/2007 9:37 AM (GMT -7)   
Oops my bad on the fistula/fissure comment. I know God has something special for you. Unfortunately God's schedule isn't always the same as ours. Hang tight, He'll answer you soon, He always does.

God Bless,
Gail *Nanners*
Been living with Crohn's Disease for 32 years.  Currently on Asacol, Prilosec 60 mg, Estrace, Prinivil, Diltiazem, Percoset prn for pain and Calcium.  Resections in 2002 and 2005.  Recently diagnosed with Fibromyalgia and doing tests to see if I have Inflammatory Arthritis or AS.

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