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Crohn's Disease
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Posted 7/15/2010 12:20 AM (GMT 0)
I'll get straight to the point.

I'm 30 years old (31 in a little over a month), married and I want to start a family. But I've been holding off because I can't seem to get out of this flare. Tried Pentasa, Imuran, Humira... the only thing that seems to work is Prednisone. And that's not exactly a great drug to be on.

These are my 2 options: Remicade or an ostomy.

If I take the Remicade I'll have to wait about a year before I can get pregnant, to make sure my body accepts it... that's if it works.
If I get an ostomy, it might take a year to fully recover... but at least I'll be better, right? And I can get on with my life.

Still have to see the OBGYN and surgeon to discuss all of this. Thought I might get some advice from other women with Crohn's. Some days I think "bring on the ostomy!" and other days I think I should try the Remicade before making any rash decisions. But say I give the Remicade a shot for 6 months and it doesn't work, I'll have to go for the ostomy anyway, and it will be another 6 - 18 months to fully recover...

So confused! What would you do?
Posted 7/15/2010 12:47 AM (GMT 0)
I don't think an ostomy would necessarily CURE Crohn's. They say you can cure colitis with a colectomy, but you can have Crohn's anywhere in the GI tract, from mouth to tush.

Maybe I'm misinformed, but that's what I've been told.

How bad is the flare? Maybe pregnancy will stop it.
Posted 7/15/2010 1:12 AM (GMT 0)
I take remicade and I have an ostomy. Though I don't have any kids. The remicade for me was a miracle drug, it started working for me on the first time. Though after about a year on I started to flare again. After having 10 surgeries in 5 months, my doctors decided to give me an ostomy. I was back on my feet after a few months and have just had my one year anniversary, with the ostomy. The ostomy is good because I am able to go places and do things that I wasn't able to before. The only downside is I don't like how it looks. I feel that it is really noticeable under my cloths. This is just my experience I hope it helps you figure out what to do.
Posted 7/15/2010 2:39 AM (GMT 0)
I recommend the remicade and your Chron's will get better while you are pregnant. I got pregnant on 2008 and my Chron's was under control the entire time :). I was still taking remicade during pregnancy, I have a beautiful and healthy baby girl.
Posted 7/15/2010 3:24 AM (GMT 0)
I took prednisone and pentasa and really strong probiotics and digestive enzymes while pregnant. I also ate a very very strict diet of more natural foods. I basically limited processed foods, sugar, greasy foods, etc and ate the same things every day for all nine months and breastfeeding.

I had some very serious health problems while pregnant, but it all worked out in the end.

If you haven't already, I suggest you radically change your diet to one that is has more natural and pure foods. Add probiotics and digestive enzymes, and take the meds that you need to that will be safe for baby. Prednisone has been tried and tested for more than 50 years.

It can and does work out for lots of us crohnie moms who are sick while pregnant. But try to get as healthy as possible before and do whatever it takes to improve your symptoms to bring a baby safely into the world!

Best wishes!

Post Edited (Roni) : 7/14/2010 9:27:44 PM (GMT-6)

Posted 7/15/2010 3:40 AM (GMT 0)
I'd recommend trying remicade before you go under the knife. Once you cut, you can't undo that, but it won't hurt you to give the remicade a chance - what if it works and you can avoid surgery altogether? Remicade was a miracle drug for me. Worked immediately. One thing is for sure - you should know within months (at most) if the remicade is working for you. I don't know who told you that you'd have to wait a year to see if it was working, but that's not true.

I have 3 children. Going for a 4th. My first 2 are remicade babies and the 3rd is a humira baby. I had my first at 31 after being in a 2 year flare. I was coming out of the flare, but not great when I got pregnant and things went well. I actually went into remission because of the pregnancy hormones. Like Roni - I also drastically changed my diet. For me the Specific Carbohydrate Diet made all of the difference. Prior to trying the diet I had 2 miscarriages. I 100% believe that the remicade and the diet are what allowed me to get pregnant and stay pregnant.

I know we're all different and what worked for me may not work for you, but I would be VERY cautious about heading into surgery when you can try other things first. I think you have LOTS of good reasons to believe that the remicade and some dietary changes can help you significantly. I hope you find what works. Keep us posted on your progress!

Stef
Posted 7/15/2010 4:03 AM (GMT 0)
Just to let you know with me I had an emergency ostomy had multiple complications even a year later I was having surgeries to fix the temp ostomy reversal issues I had since my CD came back within a month of even the temp ostomy had that reversed it came back and caused a fistula in a month...had more surgery and now on weekly humira or I flare..I want a family too when I had my Scope to check my disease 8 months after the last surgery I had I had disease in areas that had never been affected before...granted I was also going thru a divorce. I am with a great guy now hopeing to start a family soon myself he has teen children from a previous relationship which are great I too am 31 and itching to have at least 1 of my own children...hope whatever choice you decide you dont have the mess I did. remicade did work for me from 2001-2007 and actually put me in remission for a while
Posted 7/15/2010 7:46 PM (GMT 0)
my mother had a colostomy and almost all of her intestine removed and if she goes off her meds she can still flare. i hope the remicade works for you!!
Posted 7/15/2010 9:28 PM (GMT 0)

viv1123 said...
I recommend the remicade and your Chron's will get better while you are pregnant. I got pregnant on 2008 and my Chron's was under control the entire time :). I was still taking remicade during pregnancy, I have a beautiful and healthy baby girl.

 

 

 

Pregnancy is never advised if you are in a flare. Any doctor, website, OB-GYN or Crohn's specialist will advise you get your disease into remission or as stable as possible, before you consider getting pregnant. If you are flaring, it's true hormones from pregnancy have had a positive effect for some ppl with Crohn's. Pregnancy lowers your immune response. If you are flaring however, your changes of miscarriage or spontaneous abortion increase by 3-5x. Just be careful and try to take care of you...

Posted 7/16/2010 2:33 AM (GMT 0)
You didn't mention trying enteral nutrition (temporary use of special liquid meal-replacement drinks in place of regular food and beverages to induce remission, or alongside a regular diet to help maintain remission). It is safe during pregnancy and might be something you might want to try before going to Remicaid or surgery.
Posted 7/16/2010 2:34 AM (GMT 0)

jenngrl81 said...

viv1123 said...
I recommend the remicade and your Chron's will get better while you are pregnant. I got pregnant on 2008 and my Chron's was under control the entire time :). I was still taking remicade during pregnancy, I have a beautiful and healthy baby girl.

 

 

 

Pregnancy is never advised if you are in a flare. Any doctor, website, OB-GYN or Crohn's specialist will advise you get your disease into remission or as stable as possible, before you consider getting pregnant. If you are flaring, it's true hormones from pregnancy have had a positive effect for some ppl with Crohn's. Pregnancy lowers your immune response. If you are flaring however, your changes of miscarriage or spontaneous abortion increase by 3-5x. Just be careful and try to take care of you...

I bet what viv1123 is saying is that Crohns will be better during pegnancy and not suggesting getting pregnant while in  a flare.  I would try remicade first and if you do well, then maybe a baby is in your future.  I just had my first at 35 and was on Remicade through out pregnancy.  I wish I could be pregnant every day as for me it was the best my crohns behaved in years.  I had the little guy and right back to crohns fun.

Posted 7/16/2010 3:01 AM (GMT 0)
I agree with the others, I'm not sure why you'd think you'd have to wait a year to try having a baby if you try Remicade, cause like alot said, they have Remi babies and I just started on it too and one of the first things they told me was 'if you plan to get pregnant let us know and we'll schedule the infusions around the pregnancy' so they can make room for it quite easily, you just have to keep doctors and the infusion people in the know of course and it'll all be worked out.
I agree with others though, try and get out of a flare before getting pregnant.
I had a ton of flares before I got pregnant, waited til they stopped, even if for a month and got pregnant (actually I felt GREAT during pregnancy, no flares, no pains, no crohns nothing acting up..I wish I could be ALWAYS pregnant just to have that feeling again, lol) but afterwards and to this day a year later I'm flaring like mad (which makes it hard to watch baby, so make sure you have a GREAT support system behind you--parents, grandparents, anyone)...
I can't say anything about the ostomy myself, never had a surgery and my dad is the one with the total colostomy--so a males side doesn't help--but he sure does still flare. So that's not really a cure either.
Personally I'd try meds before a surgery you can't turn back from.
Either way good luck and hopefully you get that family you desire!!!
Posted 7/17/2010 6:08 AM (GMT 0)
Thank you so much for all of your replies. You've really helped me put things in perspective.

I know that a lot of times pregnancy can make Crohn's symptoms disappear, but other times it can get worse. Maybe if I can get my symptoms to an acceptable level...

Was told I should give Humira a try for 12 months before trying to get pregnant, figured it would be the same thing with Remicade. Maybe it's not. After a year on Humira I was no better than 12 months before.

Can't believe you can still flare with an ostomy! That really sucks. Just when you think you've cut it off at the source... it finds a way to come back.

That settles it then. I'll be going into my appointments with the OBGYN, surgeon and GI with Remicade at the top of my list.

Thanks again.
Posted 7/17/2010 10:15 PM (GMT 0)
Forgot to mention. I've tried the specific carbohydrate diet and it didn't work for me.
Posted 7/17/2010 10:38 PM (GMT 0)
I would definitely try Remicade. I have heard about a lot of women having healthy babies on Remicade. I have read that women with an ostomy have reduced chances of concieving. I am not sure if it is true but that's what my GI told me. She told me it is probably best not to consider surgery if I want children in the future. She didn't say NOT to, she said it's probably best to wait until I am sure about what I want. Goodluck with your decision and I hope you're feeling well enough to get pregnant soon!
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