What treatment were you given for your Crohn's after you became pregnant???

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cayer
Regular Member


Date Joined Jan 2009
Total Posts : 76
   Posted 12/2/2009 12:18 AM (GMT -7)   
I have had conflicting opinions on whether I can get proper treatment for my Crohn's during my pregnancy. I am 18 weeks at the moment and my current GI wont treat it and i'm very unwell.

I was sure I read that some of you have had different treatment while pregnant and my GI thinks infleximab will be the best solution for me but wont put me on it until the pregnancy is over. I am now looking for yet another Doc but wondering if you could list the drugs you were put on after you became pregnant (because apparently its more dangerous if you start drugs after you get pregnant because your body's not used to it...but I don't know)

Thanks guys x x

p.s I have not been treated for the Crohn's and now he also wont give me pain killers to manage the pain either except panadine forte (which messes up my tummy and bowels and does not relieve me) I told him the only pain relief that helped me was endone which I took 3-4 times a week once a day when I did at night. So if you could also list the pain medication you took during the pregnancy I would also appreciate reading the different experiences. mad
Tina 26yrs old Diagnosed in 2000 with Crohn's surgery for perianal abscess and fistulas
currently on Imuran 125mg Motillium for digestion used in the past Remcide, salofalc, pred.
Worst pain equal to child labor was after eating home made Granola...i can still hear the screams ha ha.


paintedsongs
Regular Member


Date Joined Jul 2005
Total Posts : 207
   Posted 12/2/2009 5:08 AM (GMT -7)   
Congratulations first off on being pregnant!!! How exciting! I am currently not prgenant, but my husband & I are actively trying. So I have had this discussion with my GI because I have concern about a flare while pregnant as well. My GI rec I go off my Imuran. Now many people on this board have had healthy babies on mnay drugs including Imuran.  My GI plans to utilize prednisone if I flare. I am not crazy about this idea b/c I think pred is evil. But he feels its the only drug around long enough with enough research to show short term and long term effects on a child. But like I said many have had babies while using Remicade and other meds. Google back in the posts here, I had read many of threads on this subject. I think alot of it is what you and your doctor decide you both are comfortable with. I have full confidence in my GI and really trust his opinion.  Now I flare here and there and have been able to get it in control with a liquid diet for a few days then soft foods for a few more and then about 1 week later I am back to my normal. So my Crohns is not as persistant as some of the other folks here as well. Good luck to you whith whatever decision you make. A second opinion sounds like a good idea though.

30 Year old Female. Dx with Crohns 2005. Just went med free as of July '09 doing well so far.... Hx: Imuran 50 mg. Had 3 remicade infusions which put me in remission upon dx.

Dx with Pyoderma Gangrenosum Nov '07. Used Prednisone and 3 more infusions to close up the PG.
I do believe everything happens for a reason, but I still am waiting to figure this one out :)


Stef17
Veteran Member


Date Joined Feb 2003
Total Posts : 1811
   Posted 12/2/2009 7:12 AM (GMT -7)   
WHAT????????? Your GI will not treat you with meds because you're pregnant???? OUTRAGEOUS! You need to find a new GI A.S.A.P. Seriously, if he is unwilling to treat you, then you MUST find a doctor who will. I have had 3 children and during each pregnancy I have stayed on all of my regular meds (asacol, nexium, prednisone and remicade/humira). I understand the desire to take a conservative approach, but if you go into a full-on flare up not only are you risking your own health, but it's not good for the baby either. Remicade (infliximab) has shown not to cross the placenta until somewhere between weeks 30-32 of the pregnancy. That information was not known at the time I had my first baby and I had infusions at 30 and 35 weeks. NOTHING is wrong with my kid. She's bright, healthy, and perfect in every way. In fact, all 3 of my kiddos are perfectly healthy.

The general philosophy among doctors these days is healthy mom = healthy baby. So most of them are willing to treat with class B and C drugs. I never took pain meds, so I'm sorry I can't help you there. Are you seeing a maternal/fetal medicine specialist (high-risk OB)? What does your OB say about all of this? Would your OB be willing to work with your GI?

For the record, my sister is pregnant and has severe arthritis. Her Rheumy only wanted to treat her with prednisone, but it wasn't helping and she was practically crippled. Sis finally convinced her doc to get her back on Enbrel and now she's doing GREAT. She started Enbrel around 18-20 weeks. Baby is fine, sis feels great. You just have to have your info so you know how to present your case to the doc. Please keep us posted!!!!

LBJ
Veteran Member


Date Joined May 2005
Total Posts : 511
   Posted 12/2/2009 4:36 PM (GMT -7)   
I agree, that is just crazy that your GI will not treat you because you are pregnant.  You definitely
need to find a new GI doc.   I have a 3 year old and was on 6mp while pregnant with him.  He
is as healthy as can be.  We plan on trying again in 2010 and I asked my doc about me being
on Cimzia. He assured me that it was totally fine. I just had my OB apt. two weeks ago and double
checked with my OB doc.  He did his own research and called me back in a few days to reassure
me that being on Cimzia was totally safe if we get pregnant.  So there are a lot of drugs out there
that are completly safe for you to take while pregnant. Not being on anything is a scary thing.
Living with Crohn's Disease since Jan./2000 
I'm a true Crohnie with IBS and Arthrities too. I have Crohn's very mild compared to a lot of Crohn's people.
 
Meds I have tried:  Too many to list- LOL
Meds currently on:  Tramadol for the pain
                               Cimzia Injections. Just started on 9/30/2009                      
No Surgeries
 


mel05
Regular Member


Date Joined Jan 2008
Total Posts : 87
   Posted 12/2/2009 5:25 PM (GMT -7)   
I just gave birth 2 and a half weeks ago and was on Pentasa the whole time.  It was fine with all of my doctors.  I am also currently breastfeeding.

Diagnosed with crohn's in January 2008! 
Pentasa 1000 mg 4 times a day
 
I am 29 years old and have been married for 4 years.  My husband and I had our baby girl November 16, 2009.  Abigail Christine was 7 pounds 3 ounces and 19 inches long!


inflamed
Veteran Member


Date Joined Nov 2005
Total Posts : 1340
   Posted 12/2/2009 8:06 PM (GMT -7)   
You need a new GI now!!! A the research I've seen says the complications fir pregnant women and babies occurs when the disease is out of control. Letting you CD go is more dangerous than most drugs. I'm taking pentasa for my second pregnancy but went into both in remission. Sounds like you need more than that. My doc's go to for pregnant flaring women is pred, but it's not the only option. I am absolutely floored by your doc. I'm 12 weeks and experiencing only minor symptoms and my GI is rushing me in for an appt and would treat of necessary. Find a new doctor and demand care.
Mom to a healthy Pentasa baby and pregnant with #2. 5+ years remission, woo hoo!


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 12/2/2009 8:52 PM (GMT -7)   
Cayer, your care needs seem to have become much more complex over the last few months, and I think it might be time to seriously consider moving up to a major teaching hospital. I know we've discussed this before and I know you said you feel comfortable with this man, but I don't think there's any harm in seeking a second, and more expert, opinion.

Are you a member of Crohn's Colitis Australia? They hold IBD symposiums pretty regularly, and I'm pretty sure that one of their 2009 speakers on IBD, pregnancy and fertility came from your city. They might be able to put you in touch with her, or recommend you to a doctor who has a special interest in pregnant women with Crohn's.

Keep hanging in there,

Ivy.
Co-Moderator Crohn's Forum.

Medications for Crohn's ~~ Diet and Nutritional Therapy for Crohn's ~~ Dealing with Abscesses and Fistulae ~~


inflamed
Veteran Member


Date Joined Nov 2005
Total Posts : 1340
   Posted 12/2/2009 9:36 PM (GMT -7)   
Sorry for the typos above. Typing with thumbs. Hang in there til you can find a good doc and let us know how you're doing. I'm due less than 6 weeks after you.
Mom to a healthy Pentasa baby and pregnant with #2. 5+ years remission, woo hoo!


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 12/2/2009 9:45 PM (GMT -7)   
Hey, inflamed, I didn't know you were pregnant again. Congratulations!!
Co-Moderator Crohn's Forum.

Medications for Crohn's ~~ Diet and Nutritional Therapy for Crohn's ~~ Dealing with Abscesses and Fistulae ~~


cayer
Regular Member


Date Joined Jan 2009
Total Posts : 76
   Posted Yesterday 4:51 AM (GMT -7)   
Thanks again for your opinions and stories, I booked in an appointment with a new GI at a large hospital in Melbourne today (my sister is a nurse and got talking to him about me and offered to treat me saying he had lots of experience with Crohn's during pregnancy)

a background story is that I was due to get infliximab and then my GI and I discovered I was 6 week pregnant so he said he didn't want to do the treatment until after the pregnancy and told me that the hormones would probably put me into remission...so I decided to wait till after the 2nd trimester to say "I'm still not well" and not have to hear from the 4th doctor that the hormones were miraculously going to heal me.

Its so hard to know when to pull the pin on a doctor and although I wanted to when he told me he would not continue with the treatment when I became pregnant I 'like always' just give them a bit more time and a bit more faith and wonder why it's been 2 and a half years without any decent help. This will be my 4th GI and I guess some people are more lucky when finding someone who is 'good' but I have learnt now that it doesn't matter what the doctors, nurses and specialist's think about a GI it really matters what the patients think.

The worst thing was (and last straw) when I saw my GI on Tuesday he hardly remembered who I was and I had seen him half a dozen times since july and twice in hospital...'shrug'
Tina 26yrs old Diagnosed in 2000 with Crohn's surgery for perianal abscess and fistulas
currently on Imuran 125mg Motillium for digestion used in the past Remcide, salofalc, pred.
Worst pain equal to child labor was after eating home made Granola...i can still hear the screams ha ha.


cayer
Regular Member


Date Joined Jan 2009
Total Posts : 76
   Posted Yesterday 5:01 AM (GMT -7)   
oh and sorry Ivy i'm not a member of the Crohn's association but did look up to join one day but couldn't find it so I will try to look again, thanks for the suggestions.

p.s I found out yesterday I'm having a girl! one 2 and a half year old boy and now a girl, I think I did pretty well considering I was...unwell ha ha

P.P.S I heard an interesting theory from a doctor years ago that when your very sick your female reproductive organs will fractionally move closer down to help with fertility....I don't know if this is right but I never would have thought I would have been able to conceive in the shape I was in but WALLA!
Tina 26yrs old Diagnosed in 2000 with Crohn's surgery for perianal abscess and fistulas
currently on Imuran 125mg Motillium for digestion used in the past Remcide, salofalc, pred.
Worst pain equal to child labor was after eating home made Granola...i can still hear the screams ha ha.


inflamed
Veteran Member


Date Joined Nov 2005
Total Posts : 1340
   Posted Yesterday 7:56 AM (GMT -7)   
Ivy-- thanks! I'm pretty giddy about being able to have another so soon. They'll be just under 2 years apart. We'll see how my job deals with it.

Cayer-- glad you're seeing a new doc. The hormones curing you idea drives me nuts because they are just as likely to make you worse. I was lucky to be assigned the best local GI on my first trip to the ER, but I was a miserable case at the time, so they didn't waste timing assigning me the best. I've been so thankful for that.
Mom to a healthy Pentasa baby and pregnant with #2. 5+ years remission, woo hoo!


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted Yesterday 1:05 PM (GMT -7)   

ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted Yesterday 1:24 PM (GMT -7)   
Inflamed:

Yes, I think this is going to be lots of work (and sleepless nights) for you. On the plus side, I think the kiddies have a good chance of really enjoying each others' company and being good playmates :-).

Congrats on the daughter, Cayer.
Co-Moderator Crohn's Forum.

Medications for Crohn's ~~ Diet and Nutritional Therapy for Crohn's ~~ Dealing with Abscesses and Fistulae ~~

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