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Crohn's Disease Forum » Your Story » Need some help


05-05-2011, 11:12 PM   #1
Mj85
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Need some help

Hey guys my name is mj. I do not have crohns however my fiancé does. From what I understand it's a pretty bad case. I know the basics of the disease but have had questions since we have been talking about te future plus kids. She is currently on remicade and is responding well to it. She goes every 8 weeks. Now my main concern is having her on it while being pregnant. I have read that being pregnant while on it there is a greater chance of miscarriage or having heart problems. I am not sure if anyone else knows more about it or has had 1st hand experience. Also I am kind of unclear on the surgery part. Basically what the chances are of minimizing any pains or chances of having it come back or having to have a pouch inserted. I know I sound pretty ignorant about this, mostly because I am. If anyone woul be so kind as to send me some links or explain this to me In simple terms it would be most appreciated. Thank you all for your replies I'n advanced.

Kindest regards,

MJ
05-06-2011, 11:16 AM   #2
dreamintwilight
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Hi MJ!

It's great you are doing as much research on your fiancé's health as you can. It's a tremendous support knowing your loved one cares about your well-being as well as a future child's well-being. So, kudos to you!

There is a sub-forum in the General IBD Discussion Forum called the PRegnancy and Crohn's Forum. There's lots of useful information on there about women who have or are going through experiences of pregnancy while having active Crohn's. There's tons of info on there about medications you can and can't be on while pregnant. A lot of the time it has to do with the GI's opinion. some GIs are extra careful while others view the risks of having the woman off their meds as a higher risk than if she were to stay on. The most important thing is she should be at her best health to deliver the baby. Some doctors suggest taking the Remicade as late as possible right before the birth with Remicade.

Anyway, here is the direct link to the pregnancy sub-forum I was talking about:

http://www.crohnsforum.com/forumdisplay.php?f=45
__________________
Marisa
February 2010 - diagnosed with Crohn's disease.
January 2011 - Inflammation downgraded from moderate-severe to mild with no symptoms!
January 2014 - adopted a mostly Paleo diet
May 2015 - still in remission!


Currently Taking
Humira - 40mg/week
Imuran - 125 mg/day
Calcium magnesium citrate
Fermented cod liver oil/butter blend
Culturelle probiotics
Vitamin D
Vitamin C
Biotin
Allegra
05-06-2011, 09:35 PM   #3
Mj85
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Thanks for getting back to me. I looked at those threads they were very helpful! I did have a question though, which may be a question for the GI. But if you are on remicade can you stop taking it while being pregnant and then go back on it, or does your body get immune to the medicine?
05-06-2011, 09:37 PM   #4
xJillx
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Hi MJ and welcome! Your fiance is very lucky to have such a loving and concerned man in her life. I am not on Remicade nor have had children, but I do hope to have kids in the near future and have done a lot of homework. First off, the most important thing is for the mother to be as healthy as possible when getting pregnant. If you get pregnant while flaring, it is most likely you'll remain flaring through the pregnancy. Also, it is recommended to remain on your medication; active Crohn's causes more risk than the medication. There are some drugs that should not be taken during pregnancy, but Remicade is not one of them. Actually, in the link below from the Crohn's & Colitis Foundation of America, it says Remicade is not associated with any increased risk or complications in pregnancy. There are many others on the forum more versed in the subject, though, and I hope they pop in with some additional advice. Good luck!

http://www.ccfa.org/media/pdf/FactSheets/pregnancy.pdf
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Jill

Diagnosed with Crohn's Disease - July 2010
Diagnosis of Crohn's Disease Retracted - October 2011

I am still sick and so confused...
05-06-2011, 09:41 PM   #5
xJillx
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Thanks for getting back to me. I looked at those threads they were very helpful! I did have a question though, which may be a question for the GI. But if you are on remicade can you stop taking it while being pregnant and then go back on it, or does your body get immune to the medicine?
Again, I am not on Remicade and no expert, but from what I have read people can build up an immunity so to speak towards Remicade. So, starting and stopping is not recommended. If it is working, stick with it.
05-06-2011, 09:43 PM   #6
Mj85
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Thank you very much for your input. I have read that on the studies of it there is a more likely chance of miscarriages, and also some heart defects of the babies. But the chances are slim. I am just trying to avoid as many complications as possible when trying to conceive. I have also read that in the 1st trimester of a pregnancy is when you are more prone to flares. So it seems enviable that there will be complications.... But I will have to do more research on the medication itself.

Thanks again!
05-06-2011, 10:26 PM   #7
glum chump
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Hi MJ

Jill's right. If Remicade is working for your fiancee, then I wouldn't discontinue using it and go back on it. The likelihood of Remicade being effective in the second round is fairly poor. Like Jill said, you build up antibodies and the Remicade loses some of its efficacy.

Sounds like you're both trying to figure out a whole bunch of stuff for yourselves and getting prepared---sorting through all the information is quite the task, isn't it?!

I wish you both well, and welcome to the forum!

Kismet
05-07-2011, 03:39 PM   #8
dreamintwilight
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Yes, agreed about the starting and stopping of Remicade. More often than not, people who stop and restart are not able to tolerate it. Though, if that is the case, your wife could try Humira if stopping Remicade is the path that she and her doctor have agreed upon.

Most studies I have read say that it is perfectly safe for women to stay on biologics while pregnant. I just had a follow-up with my GI last week and asked him some questions about pregnancy (we're not ready to have a family yet, but starting to plan for the future) and he said I would continue on the course of treatment I am currently on (Imuran + weekly Humira shots). I also read an article a while back that said the risk of birth defects is about the same for a woman with Crohn'son those medications than a woman without Crohn's. There are more complications associated with a woman deciding to go completely without any type of medication during pregnancy. I think it's safe to say most doctors these days will encourage a woman to maintain remission or at least keep the disease stable by keeping up with regular medications.

There's a technique called pump and dump if a woman decides to breastfeed while on Imuran. She will take Imuran in the evening and first thing in the morning, she will pump milk and then dump her first batch, when the concentration of medication will be at the highest.

With biologics...women are recommended to delay necessary immunizations for 3 months after birth so any traces of the biologic will clear from the baby's body that may put them at an increased risk of any live viruses found in the immunizations.

The only medication I have heard you absolutely cannot be on while pregnant is methotrexate. The others are evaluated by the doctor and how the woman's disease is doing prior to that. Plenty of women, including on this forum, have had happy and healthy babies while taking biologics and immune suppressants.
05-07-2011, 11:00 PM   #9
ameslouise
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Hi MJ and welcome!

Can't add much more than what Jill and Marisa posted above, but I just wanted to welcome you to the forum and wish you and your fiance good luck! Glad to hear the Remi is doing the trick for her right now and I hope it continues for a long time!

- Amy
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