Pregnant with Crohns- Need advise

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CrohnsKasey
New Member


Date Joined Dec 2008
Total Posts : 7
   Posted 12/14/2008 8:28 PM (GMT -7)   
This is my first time on this site.

I was diagnosed with Crohn's when I was 10 and I am now 26. This year I got married and pregnant soon after. Some doctors told me to continue my Remicade treatment to stay healthy and control the disease while others told me there was not enough research to know if it was okay for the baby. Ultimately I trusted my OB and GI and had a Remicade treatment. I lost the baby a few days later... It was devastating. The OB said it didn't develop properly but how do they know that it wasn't because of the treatment?

Now I am pregnant again. My mom says I should not take my treatment (scheduled for this Wednesday) but I do not know what to do. I am really stressed out right now with work and I know stress usually causes a flare up. And I know a flare up would not be safe for the baby. I read some old posts about people who have had babies while on Remicade but have any of you miscarried? Its such a hard decision to make. I want to be healthy and I want my baby to be healthy but I know there are no guarantees. Your advise is very much appreciated.

Thanks,
Kasey

Chasity102304
Regular Member


Date Joined Nov 2007
Total Posts : 165
   Posted 12/14/2008 8:59 PM (GMT -7)   

First I want to say Congrats on the baby!! I know you are in a difficult position right now and first and foremost I say follow your heart. What is right for one person may not be the right choice for another person.

On a positive note, I have a perfectly heathly GORGEOUS (I'm biased) 3 month old daughter who I carried while continuing my remicade treatments. I think I had 4 treatments while I was pregnant, the last one being at 31 weeks. My husband and I went to see my GI before we even started trying for baby #2 and my GI strongly recommended continuing the treatments during the pregnancy. I intended to see my OB and get his opinion, but I got pregnant on the first try (sorry if that's TMI) before I made it to my appt. My OB wasn't completely for the treatments because he had never treated a crohn's patient on remicade, but said if I needed the medication to stay healthy then it was better for the baby for me to continue. I had ALOT of days where I worried and cried wondering if I had made the right choice for me or for my daughter. But then I would remember my first pregnancy with my 3 year old daughter. IT WAS HORRIFIC!!! I didn't know at the time that I had crohn's, but at 12 weeks I started having the worst pain in my life and ended up in the ER. After months of weekly dr visits, limited testing to try and dx me, pain meds and 30+ days in the hospital, I delivered a perfectly healthy baby girl. After I was dx'd about 3-4 months after she was born, my new GI told me that I was lucky I carried her to term and made it thru myself. I had a partial obstruction during the pregnancy which was dangerous because they didn't know what it was at the time and it wasn't being treated at all.

For me, with the second baby, staying on the meds was my ONLY option. Without the remicade I would not have even considered having another child. Everyone has to make the choice that is right for them and their significant other. You have to do what is right for you in your heart and mind. If you trust your GI and OB..go with what they are suggesting. I know for me that was key. There are MANY others on this forum who have successful stories of pregnancy/delivery of babies while on Remicade. I am not sure that I have heard of any miscarriages known to be caused by remicade treatments.

goodluck!!!


Fibromyalgia DX March 2003
Crohn's DX Jan 2006 (Symptoms since 96-Misdiagnosed as "female" problems-Major flare during pregnancy in 05 which lead to DX)
1st resection July 2007
Currently on Remicade/8 weeks


FitzyK23
Veteran Member


Date Joined May 2005
Total Posts : 4219
   Posted 12/14/2008 9:10 PM (GMT -7)   
I haven't been in your situation but was wondering how far along you were when you miscarried - if it was very early on it may have just been a "normal" miscarriage. They happen way more frequently then I ever knew at first - I know three girls (healthy girls) who have miscarried in the last year. I am guessing it is just a coincidence but I definitley understand your fear and hope that someone will be along soon to help.
27 Year old married female law student (last year!!). Diagnosed w/ CD 4 years ago, IBS for over 10 years before that, which was probably the CD. I am sort of lactose intollerant too but can handle anything cultured and do well w/ lactose pills and lactaid. For crohns I am currently on Pentasa 4 pills/4x day and hysociamine prn. I also have bad acid reflux and have been on PPI's since age 13. I have been through prilosec, prevacid, and nexium. Currently I am on Protonix in the morning and Zantac at night. I also take a birth control pill to allow some fun in my life.


Kaycie
Regular Member


Date Joined Jan 2006
Total Posts : 449
   Posted 12/14/2008 11:55 PM (GMT -7)   
Didn't read any other of the posts...but

I suffered 3 years of infertility and then fell pregnant after our 2nd attempt at in-vitro fertilization. I carried my twin girls until 29 weeks and 2 days and then went into sudden explained pre-term labor.

My first daughter died due to a condition called Cloaca - It's EXTREMELY rare, but EVERY high-risk OB and EVERY GI and/or colon surgeon has REASSURED ME that my medicine had NOTHING to do with it. NOTHING. In fact, my MFM (Maternal FEtal Medicine) doc was completely okay with Remicade while pregnant. My GI who has over 1500 patients told me that they've NEVER had anyone have a child with birth defects due to Remicade.

My other daughter is a happy and healthy 16.5 month old who is keeping me on my toes! She is perfectly fine and has a great immune system. She rarely gets sick. In fact, I'm more worried about ME getting sick then her! She's done great.... receiving all vaccinations and everything.

I sincerely believe that your miscarriage was NOT related to your Remicade. You NEED your Remicade to stay healthy, and I HIGHLY suggest you listen to your GI and your OB and continue with your medications.

Email me if you need to.... I was advised not to breastfeed but that's because I have flares when my hormones fluctuate. But, the MFM at Vanderbilt told me that Remicade and breastfeeding were fine as well....
Kaycie - Age: 26
Crohn's - Dx Nov 05
Failed Remicade, moving onto a Clinical Trial called ABT-874 - Tentative start date - 10/2/08 - 10/16/08  - Infusion, every 4 weeks.
IVF #1 (In-Vitro Fertilization) - Failed
IVF #2 - IVIg, Heparin, Baby Aspirin - TWIN GIRLS!!!
Reagan Dawn - 8/2/07 - Lived 1 hour 27 minutes due to Cloaca, NOT affiliated with my Crohn's
Addison Maria - 8/2/07 - 13 months old


provolunteer
Regular Member


Date Joined Dec 2008
Total Posts : 21
   Posted 12/18/2008 10:55 AM (GMT -7)   

Hi!

Congradulations first of all. Second, I,like you,was diagnosed with Crohn's at age 10. I just recently turned 40. I was the youngest person in our area to be diagnosed with this and it wasn't until 3 years after my first surgery. I was origanally thought to have a burst appendix and when exploratory surgery revealed appendix was fine(it was removed anyway), the surgeons found what they thought were polyps. 18 inches of my small intestine was removed. 3 years later, i was hospitalized for anorexia nervosa and being intraveinously and force fed. I dropped half my body weight during the summer between 9th and 10th grade. I was 90 lbs starting high school. Absolutely no one believed who I was. The anorexia was misdianosed and after extensive testing, I finally was told it was Crohn's. I missed most of my 10th grade year.

My treatment consisted mainly of the drugs Azulfidine,Prednisone,Flagyl and other various antibiotics. Drs. did not know much on how to treat such a young person with Crohn's so much of it was trial and error.

A couple years after high school, I got married. Crohn's had flared up and done a lot of damage to my insides. I've had fistulas from my small intestine to every organ but my lungs,heart and those above chest. I had to have my right side ovary and fallopian tube removed due to extensive damage(tubes and ovaries were switched places with kidneys). I was told that I would never be able to get pregnant(chances were less than one percent of conceiving) and could not carry a child to full term if I did. One year after the partial hysterectomy, I thought the Crohn's was flaring up and was put back on Azulfidine and Prednisone. An ultrasound revealed I was pregnant. The drs. kept me on the meds during the pregnancy at low doses and I was checked on twice a week. My due date was Nov. 4,1991. My son arrived Dec. 1rst. Although he was only 6lbs and 13 oz, I required a lot of stitching back together. My ob-g said that my insides had not fully matured so it was like a 10 year giving birth to a bowling ball. Everything else went pretty good. 17 months later, I had a baby girl. Due to the damage from my son's birth, she was a planned c-section, weighing 5lbs and 7 oz.  Both pregnancies I was taking the medications.

My children are now 17 and 15. The meds I was taking did affect their permanent teeth development. They both have a slight yellow tint that the dentist attributted to the sulfa drugs and bleaching will not help. The kids understand and have been a God send for me. I now have a total hysterectomy(not even the cervix is left,thank goodness no more paps!) and have had permanent colostomy. The next time I have to have surgery, will probably be my last, as I have only a few feet of intestines left.

My kids are proof that even though impossible odds are hard to beat, that less than 1 percent is there. By the way, both of my kids taller than me now.Matthew is 17 and 6'3". Elizabeth is 15 and 5'7". I am 5'4". There dad is 5'6"(we're divorced now). I wish you all the luck in the world, blessings of good health and hopes of a wonderful future.


Stef17
Veteran Member


Date Joined Feb 2003
Total Posts : 1811
   Posted 12/18/2008 2:39 PM (GMT -7)   
Kasey - I'm so sorry that you miscarried. I know the devastation it causes and I know it takes the fun out of being pregnant again because you're always a little afraid after such a loss. But please, take your remicade. Trust me on this one. I know it may sound very arrogant or even cavalier of me to say, but I have TONS of experience in this department. I have 2 healthy, intelligent remicade babies and I'm going to have my 3rd (remicade-then-humira) baby this Saturday. I have had 3 miscarriages. The medication has NOT been attributed to the miscarriages at all. My history goes like this: miscarriage @ 8weeks, miscarriage @ 8 weeks, baby, baby, miscarriage @ 12 weeks, baby. The first 2 miscarriages were attributed to low progesterone levels. Hormones that had nothing to do with my meds. My OB thinks I was too weak (from the crohn's) to sustain a pregnancy. I had recently come out of a SEVERE flare. The 3rd miscarriage was attributed to "genetic abnormalities", but no tests were ever done. My OB said that miscarriages are very common and that sometimes a baby seems to be developing fine until it gets to a certain point where certain genetic material is needed and it's just not there, so the body can't continue growing. So, your body purges it. It happens all the time.

I know that when you have an illness and/or take medicine it is very easy to try and draw a correlation, but it simply may just be, that what you experienced had nothing to do with the remicade at all. I took remicade back when no one really knew if it was "safe" or not. My first kiddo is almost 5 (going on 25) and she is as healthy as can be. Same with my 2nd kid. He's a little too healthy. :) Wish I could bottle up some of that energy!!! Remicade was a lifesaver for me and I *KNOW* without a doubt I wouldn't have these 2 gorgeous kids if it hadn't been for my meds. Remicade is pregnancy category B - same as Tylenol. Safe. It's easy for me to say because I have "been there-done that", but I would not hesitate to take your Remicade. Through all of my pregnancies I have seen a Maternal/Fetal Medicine Specialist. Their philosophy is "what's good for mom, is fine for baby" (barring anything crazy like crack or heroin or heavy duty drugs like Category D stuff).

In my humble opinion it would be FAR better for you to take the remicade and stay healthy than to stop taking it and risk flaring while pregnant. If you want more info or would like to email me - please click on my username and my email address will come up. I'd be happy to answer any other questions you might have. I'm no "expert", but I have LOTS of experience. Try to email me before Saturday - I'm having a baby! OR - I'll get back to you when I get home from the hospital. CONGRATS on your pregnancy!!! Try to enjoy it. And try not to stress. I know that it's so much easier said than done. Best wishes to you!!!

Stephanie

Roni
Veteran Member


Date Joined May 2003
Total Posts : 2480
   Posted 12/18/2008 4:36 PM (GMT -7)   
Congrats on being pregnant. I just had a healthy baby. It's very scary when you are chronically ill and on meds. I wasn't on remicade (can't cause of a heart problem), but I was on prednisone, pentasa, heart medication, and reg. vitamins etc. I had heavy bleeding at 10.5 weeks and ongoing bleeding for 1st trimester. I was sick with CD the whole time, but it was a little less diarrhea at times. I also had gest. diabetes and had to take insulin.

In regards to remicade, it is a relatively new drug so no one can say for sure how it will affect the baby long term. Prednisone has been used in pregnant women for over 50 years so they know both short term and long term effects, and pentasa doesn't get absorbed into the blood stream.

If remicade is your only option to stay healthy then you must seriously consider taking it. Being sick with CD is certainly not a good way to be pregnant.

I wish you the best with your decision and pray your baby will develop well and have a wonderful long life!

Take care.

Roni
 
P.S. since it's now thursday, if you've decided to go with remicade, you must not stress about it. Be optimistic and happy that you're pregnant!!!!

Post Edited (Roni) : 12/18/2008 4:40:07 PM (GMT-7)


CrohnsKasey
New Member


Date Joined Dec 2008
Total Posts : 7
   Posted 12/18/2008 7:22 PM (GMT -7)   
Thank you all for taking the time to give me advise and share your experiences. It really does help. For those of you who wondered, I was only 8 weeks when I miscarried. And yes, I did go ahead with the remicade treatment yesterday.

Stephanie- you are so right about a miscarriage taking the fun out of getting pregnant again. I haven't told anyone other than my husband because I do not want to jinx it. I haven't even bought a pregnancy test.

I am so happy to hear about all of your success stories. It gives me great hope that things will work out for me and my husband. I love kids. And I can't wait to have one--hopefully in 9 months!

Thanks so much,
Kasey

Chronicallyill
Regular Member


Date Joined Apr 2008
Total Posts : 195
   Posted 12/18/2008 10:17 PM (GMT -7)   
Hi Kasey. I wish you all the luck in the world :).I havent taken remicade, but just wanted to share my experience with a very bad flare throughout my whole pregnancy. :( I wish my chrons had been controlled when I was pregnant. I had been taking 6mp prior. I stopped it completely 2 weeks before I found out. I just felt off. For once felt like I was healing inside. Just weird. Even weirder I went and got a kitten and it would never leave my tummy. Cats intuition or what. ha ha. Then of course my boobs started to hurt for a week straight. If that wasn't enough to tip me off I don't know what is? lol

My whole pregnancy was miserable. I had constant diarhea and never ending tummy pains. I also ended up getting blood clots in my lungs due to such a bad flare that was obviously uncontrolled. My bad. I was lucky I was never nauseas. I started out weighing 150 lbs and at 9 months was only 161 lbs. I was all baby. The doctors were worried that I was going to have an underweight baby so I had a few ultrasounds to keep track of the babys growth. Each ultrasound proved the doctors wrong. She was growing great. Greater than was expected of a healthy person. At birth Claire weighed 7 lbs 13 ozs.

At the very end of my pregnancy I was in excrutiang pain. I couldn't sleep through the night because I was constantly up going to the bathroom as well as the pressure of Claire on my intestines. You all know the feeling when the doc feels up your tummy with lots of pressure. . . Well at least that was periodical. This pain was constantly there :( My doctor tried convincing me to take the 6mp but I ignored him. It said on the script directions with all the info that it was unknown what occurs in pregnancy. As well it says that you shouldn't breastfeed while taking the drug. That was enough for me to refuse it. If it could go through my breastmilk then who knows what it would do to a fetus.

my health got to a point that my doc wore me down. I started 6mp again for a month in November of 2007. It takes longer than that for it to work which I know, but my thoughts about the baby were more profound then taking this drug that has no research on pregnancy. I was just more careful in my food choices.

What killed me, well made things worse, was that I thought because I was pregnant I might go into remission. Which I heard sometimes happens with chron's. So I ate what ever I wanted at the time.

I found when I was med free, but had full blown symptoms I could have a better feel about foods which I could and could not eat. I realized for the first time that I was gluten intloerant. I had more of a reaction being drug free. A lot of other BAD foods came out in the process. :( So out of all the sickness and stress this is the one good thing that has occured.

The one thing I would suggest, is if everyone seems to think that Remicade is safe during pregnancy, it would be the best root to go. Glad to hear you took your first treatment.

Wishing you all the best over the holidays

Nessa.
Age:22/6"1'/146lb - Diagnosed: 2001 @ age 15 now 22
First time mom as of March 8th 2008
Past drugs: Pentasa, Flagyl, Budesonide, Prednisone, tons of Antibiotics, Didrocal, 6mp
Past herbal remedies and vitamins:Probiotics, Omega 3&6, Prenatal vitamins, B12, Calcium, iron, vit C, vit D, vit E, Selenium, mineral drops
Current drugs: Valtrex, Methotrexate as of October 2008
Problems:Fissure and Tags on rectum, blood clots, Chronic UTI's, Osteopenia, Ulcers in my decending Colon
No surgeries....yet. Gone through 5 G.I.'s found a 6th G.I. crossing my fingers
Procedures: 4 colonoscopies, 1 upper endoscopy, 2 barium swallows, 1 biopsy of the fissure and tag (chron's affected)


Crohnsy
Regular Member


Date Joined Mar 2006
Total Posts : 22
   Posted 1/10/2009 11:20 AM (GMT -7)   
This was a great post and thread...I delivered a healthy 9 lb. baby boy (our first) three weeks ago.  I was dx'd w/Crohn's 3 yrs ago and tried to get pregnant for most the last two years.  We a miscarriage(at 6 wks) and six months later, I started fertility treatments (I was 37) and stopped Remicade, thinking it was the right thing to do for a pregnancy.  Well, we had another miscarriage (9 wks) and a couple of other failed attempts over the course of the year and I developed a fistula - one of the worst complications I've had from CD so far.  Yuck.  Since I was determined to get pregnant, I declined surgery and went back on Remicade.  Symptoms of the fistula were completely gone by the third or fourth infusion and I had a totally uneventful and wonderful pregnancy.  I had a lot of different advice, but the consensus of my GI, Maternal/Fetal Specialist, Rheumatologist, and Primary, was to stay on the Remicade.  It wasn't an enthusiastic endorsement, of course, but overall everyone felt it was right for me.  I still feel guilty about it, but then again, I really don't know if we'd have our son if I didn't.  Breastfeeding's also been a guilty struggle.  It's so important to me to give him the benefits of breastfeeding, but I hate that I'm also passing on the unknown risks of Remicade...But I wish you the best of luck.  We're actually looking forward to trying again at the end of '09.

Dx w/Crohn's November 2005 - still active as of November 2007 Hospitalized once, no surgeries
Colonoscopy, 2 ultrasounds, MRI, upper GI x-ray, abdominal x-ray, 2 camera endoscopies
First, Flagyl/Cipro, Prednisone, and Pentasa
10 Remicade treatments
Currently just Pentasa (4000 mg) b/c trying to get pregnant
Symptom-free (mostly) since March 2006
 


msthick
New Member


Date Joined Dec 2005
Total Posts : 12
   Posted 1/10/2009 3:07 PM (GMT -7)   
HEY WHATS UP? I HAVNT BEEN ON THE SITE FOR A COUPLE OF YEARS NOW AND IM BACK. BUT ME PERSONALLY, I THINK THAT YOU WILL BE OKAY WITHOUT THE REMICADE UNTIL YOUR PREGNANCY IS OVER... I'VE HAD CROHNS SINCE I WAS 9 YEARS OLD, AND I AM NOW 23. I HAVE NOT TOOK ANY MEDICATIONS SINCE 2007. NONE WHAT SO EVER... I ALSO USED TO BE ON REMICADE. AND THE BIG THING IS "NO STRESSING" ESPECIALLY WHILE YOU PREGNANT!!! BUT YOU WILL BE OKAY, JUST PRAY AND LEAVE IT IN GOD HANDS... AND BELIEVE ME, HE WILL TAKE CARE OF ANY SITUATION AS LONG AS YOU HAS NO WORRIES AFTER PRAYING! I BEEN FEELING JUST FINE, NO FLARE UPS OR ANYTHING. I HAD MORE FLARE UPS WHEN I WAS TAKING MEDICINE THEN I DO WITHOUT THE MEDICINE! ILL KEEP YOU IN MY PRAYERS!!!

Sunflower2003
New Member


Date Joined Jan 2009
Total Posts : 5
   Posted 1/30/2009 1:41 PM (GMT -7)   
I am a new member. I thank all of you who give of your precious time to sharing your experiences with us.

I have taken Remicade for about 2 years. I discussed my desire for pregnancy with my GI prior to Remicad and during Remicade. He stated I needed to be healthy in order to conceive and maintain a pregnancy. Eventually I became pregnant and called to inform my GI as soon as I knew at 4weeks. He advised me to continue with Remicade because having a flare up would jeopardize the pregnancy.

Unfortunately at the 16 week ultrasound, a couple of weeks ago, the dr. (maternal/fetal specialist) detected VSD (Ventricular Septal Defect) which is a hole in the wall separating the bottom two chambers of the heart. He stated the hole often closes before birth and advised me to come back in 6 weeks for another ultrasound.

I went home to ponder this information, looked at my calendar, and realized I had an infusion during the same week the baby’s heart develops. I shared my discovery with the dr. and he stated heart and esophagus problems have been reported with Remicade babies. Hoping to do everything I can in hopes the hole will close, I asked the dr. his thoughts about me continuing Remicade. He stated the defect occurs in the first trimester and thinks I should continue with Remicade. I shared the VSD discovery with my GI and he stated he had not heard of problems with Remicade babies and advised me to continue with Remicade.

I did some research before pregnancy and did not find information about side effects to babies. However, with more specific information, I have found about two articles about heart/intestinal defects in Remicade babies on a Google search. According to the American Heart Association, 9 out of 1000 children are born with a heart defect yearly. I would like to know is this statistic higher for Remicade babies.

Right now, it is wait and see for my husband and I. We are hoping the hole will close. I wonder if I should stop Remicade. I am scheduled for an infusion in two weeks.

inflamed
Veteran Member


Date Joined Nov 2005
Total Posts : 1340
   Posted 1/30/2009 2:05 PM (GMT -7)   
Crohnsy, Congrats!! Don't feel guilty about BFing while on Remicade. Little or none of the med goes into breastmilk. There was a link here a couple weeks ago on that. Also check Dr. Hale's website. He has good info on it too.
Hoping to stay in remission after the birth of a healthy baby girl. On Pentasa during my pregnancy, went med-free 2 months to nurse (stupid), but back on Pentasa and still nursing.


Sunflower2003
New Member


Date Joined Jan 2009
Total Posts : 5
   Posted 2/3/2009 9:44 PM (GMT -7)   
These are the two articles I referenced earlier.

http://www.everydayhealth.com/specialists/arthritis/kitridou/qa/pregnancy-affected-by-RA.aspx

http://www.medscape.com/viewarticle/538036

For the second article, you have go toward the bottom for fetal complications.

I am so happy for those of you who have had uneventful pregnancies with Remicade. Please pray for the healing of my baby.

Stef17
Veteran Member


Date Joined Feb 2003
Total Posts : 1811
   Posted 2/4/2009 1:22 PM (GMT -7)   
http://www.ncbi.nlm.nih.gov/pubmed/19142167

Here is the article on remicade and breastfeeding. You CAN breastfeed on remicade. It doesn't get through to the milk.

As for the heart defect, I had not heard that before. Interesting to see what the studies say. Sunflower - you have a tough decision to make. I think I would go with what your doctor said and continue with the remicade. I think that at this point it cannot harm your baby in his/her development at this point and you need to stay stable with your illness. I'm hoping that this hole has resolved itself by the time your little one is born. A lot of what is seen on ultrasounds is not there any more when baby is born. Then again, if it's still there, you are prepared to do what baby needs. Keep us posted on your progress.
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