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Hi Everyone-Long time no post!

Chronic Illness Forums
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Crohn's Disease
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Hi Everyone-Long time no post!  
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Bluize
Veteran Member
Joined : Mar 2005
Posts : 635
Posted 4/20/2009 12:56 PM (GMT -7)
I thought I would come on here for some love.

I find myself trying to have a baby via IVF and having a mad peri-anal flare!  I was in the middle of my first cycle and BAM! Currently on the anti-biotic duo of Flagyl and Cipro but can't stay on forever.  I have seen two surgeons already and both of them have no clue what to do with me. One drained an abscess and that is fine.  No scope yet.

I saw a high risk OB and he recommended a gastro at Cornell here in NYC.  It's the IBD practice, that's all they do. 

I met with a doc who is about 12 (Doogie Hauser in a skirt) but wicked smart and she wants me to do a CT (some all encompassing CT that looks at the whole shabang, a colonoscopy and a endoscopy together and soon.  I'm 42..I can't put off this babymaking any longer!  There seems to be some talk about how the hormones could have triggered it.  I never had peri-anal disease, it was always in my ileum.  After my resection in 07 I didn't go on any meds because I was trying to have a kid.  Well obviously, that didn't bode well for me.

There has to be meds that a cronie can take while pregnant.  Not many docs are willing to prescribe.  This one is willing to and has many patients in her practice that are or were pregnant and have perfectly healthy kids.  She also mentioned that there is no evidence showing that the meds cause any congenital defects.  Ok, why couldn't one of these other smarty docs tell me that?  CYA.

So here I am awaiting my tests..I am seeing a fertility doc at Cornell as well so that's why all the docs wanted me to stay in the same place for comprehensive care.  I think I'm in good hands but I'm not looking forward to any of the tests of course.  Adding to my stress is that my coverage at work will be out for some surgery and I have to tell my boss (as great as she is with me) that she'll have no coverage.

Can't cycle again for IVF until I get some sort of remission.  I never wanted to take the heavy duty meds but I may have to.

Thanks for listening, reading..letting me post after such a long absence.   I hope everyone is feeling well or will very soon.

 


Susan

 

28 years with Crohns in the term ileum.  Feb 07 Resection.  No meds currently..but there will be some I'm sure. Taking acidophilus.

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MikeB
Veteran Member
Joined : Mar 2006
Posts : 1169
Posted 4/20/2009 1:07 PM (GMT -7)
I cannot help with the baby making, but I have seen several posts here from female CD patients who did fine conceiving and delivering healthy babies on 6mp.

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NewToCD
Regular Member
Joined : Jul 2008
Posts : 57
Posted 4/20/2009 2:03 PM (GMT -7)
HI Bluize -
Just wanted to lend my support. I am in NY also, but go to an IBD specialist out of Mt Sinai.
I have been on all the heavy meds (remicade, & currently on 6MP only) In order to ease your concerns i have seen pregnant women in the remicade infusion room getting treatment & My doctor has assuered me that he has seen many successful/healthy remicade & 6MP babies.
I too plan on trying to conceive with in the next year or so but am a bit younger (turned 30 a few months ago), so i understand the concerns.
My main concern is infertility, caused by all the drugs & just the disease itself. I have been on the pill for 10 years so i have no idea what my cycle will even be like.

Doctors who do not have a lot of experience with Crohns will automatically tell you to go off the meds, this however is not always the best choice. I have been researching 6MP & most of the research relating to pregnancy was based on much higher dosages (like what they give cancer patients) The dosage for Crohns is way less & so the effects are most probably not the same.

I wish you all the luck in the world with your IVF cycles!
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Bluize
Veteran Member
Joined : Mar 2005
Posts : 635
Posted 4/20/2009 2:18 PM (GMT -7)
Thanks for the vote of confidence.  I'm just learning now that the meds as scary as they are don't necessarily impede my chances of having a bio child.  In fact, the better remission I have the healthier a pregnancy and cycle altogether.  Here I thought I had it all figured out.

I did see the team at Mt Sinai and at the time was kind of lukewarm about them.  I did have my resection at Mt. Sinai with Dr. Harris.  Still love that man.

The Center for IBD is at Cornell and that's all the do.  The main doc wasn't in my network and wanted $700 for a consult.  That's why I saw Ms. Doogie... tongue ..$30 co-pay thank you very much.

I'm so anxious to get this show on the road..time is ticking.  I wish I could turn back the clock.

 


Susan

 

28 years with Crohns in the term ileum.  Feb 07 Resection.  No meds currently..but there will be some I'm sure. Taking acidophilus.

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NewToCD
Regular Member
Joined : Jul 2008
Posts : 57
Posted 4/21/2009 5:21 AM (GMT -7)
Isn't funny how even when you know all the facts, you still second guess everything??

ie, everything you read/hear says healthy mommy = healthy baby, regardless of what meds you are on - yet we still worry about taking certain things.
Im very much guilty of this too!

Definitely keep us/me posted on how the IVF & pregnancy goes (i have great confidence that there will be one!!)
Im sure this is a tough road but you have a great attitude!
:)
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orngie
Regular Member
Joined : Feb 2009
Posts : 161
Posted 4/21/2009 5:29 AM (GMT -7)
I have no advice but wanted to wish you the best of luck.
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MMMNAVY
Veteran Member
Joined : Jul 2006
Posts : 6927
Posted 4/21/2009 7:08 AM (GMT -7)
good luck with the kiddo!

I know of several women on here that delivered on remi.
I think they might be a bit busy to post right now.
Forum Co-moderator - Crohn's Disease:_All comments have the caveat contact your local health care provider.

I will find a way or make one. –Phillip Sidney 1554-1586

All that I am and all that I shall ever be, I owe to my Angel Mother.

The Bucket List- Have you found joy in your life?  Has your life brought joy to others?

Make sure your suffering has meaning…

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Bluize
Veteran Member
Joined : Mar 2005
Posts : 635
Posted 4/21/2009 2:04 PM (GMT -7)
So this CT I'm taking Friday is a special one that looks at everything..your whole digestive tract, the repro organs and lymph glands.

Ok, good..I'll order an 8x10.

Probably May 4 for a Colonoscopy and Endo..

want to just get that over with.

IVF isn't cheap and I have limited coverage with it so I want to be sure to give myself a good shot.  I had no idea how stressful going through IVF could be.  Add the stress of a flare..grrrr...I already wasted about $8K on the first cycle that didn't work.


Susan

 

28 years with Crohns in the term ileum.  Feb 07 Resection.  No meds currently..but there will be some I'm sure. Taking acidophilus.

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donnaeil
Veteran Member
Joined : Jun 2006
Posts : 1156
Posted 4/22/2009 12:29 AM (GMT -7)
IVF is hard to get through. It is amazing how stressful trying to conceive and carry a child could be.

The best of good fortune to you.


Donnaeil
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