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Ulcerative Colitis
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Posted 1/22/2011 3:18 PM (GMT 0)
My husband and I have been married over two years and would like to start thinking about a family.  We have met a few doctors to discuss the medications I am on to see if it is even safe for me to go off the pill and there are two of medications that they would like me to be off of.  Xifaxan and Azathioprine.  I have tried twice now to get off Xifaxan and I start a flare after one day of being off it.  I haven't gotten to try going off Azathioprine because I haven't gotten off of Xifaxan.  We are a huge hurry to get pregnant, but we wanted to at least go off the pill and let things happen as they happen.  It is frustrating that I can't even do that.  Has anyone had to get off of Xifaxan and couldn't, what did you do if you have gotten off of it?  Has anyone stayed on all their meds and had healthy pregnancies?  Were your doctor's okay with that?  Are we being too cautious?  I am at a loss and in tears.  Watching my sister-in-law pop out kids they don't even plan for is pretty much rubbing salt in my wounds, I want that to be my husband and I.  Any advice or comforting words would be much appreciated.  Thanks.
Posted 1/22/2011 4:25 PM (GMT 0)
I haven't really heard of anyone taking xifaxan as a longterm treatment for UC. Usually it is given for a week or 2 weeks to kill a bacteria. I have heard of people have healthy children while on Azathioprine. You should probably consult with another doctor, one who specializes in these things. Of course it's not ideal to be on these types of meds while pregnant but they say it is better than having the mother be ill. I would try not to stress about what other people are doing, try to focus on yourself. Children are a huge committment and people really shouldn't be popping out unplanned children. It is irresponsible. Just my opinion.
Posted 1/22/2011 5:22 PM (GMT 0)
I have been on xifaxan, three pills a day, for probably 2 years. I have talked with 2 ob/gyn's and had one of them talk directly with my GI. I sent a couple messages to my GI this morning asking a bunch more questions. My sister-in-law will welcome any kid that comes her way. They are on their fourth kid. They wanted five and this fourth one just came earlier than they expected. I was just trying to say that I wish I could just go off the pill whenever I felt my husband and I were ready. We feel that as a couple we are ready, but my body is not yet. That is what gets frustrating. I guess the conversations will just continue with my doctors. Hopefully we can come up with a solution. Thanks for the help.
Posted 1/22/2011 6:02 PM (GMT 0)
Wow, very long time to be on such medications(azathioprine & xifaxan &prednisone) Do you feel comfortable with your
current GI doc? have you considered alternate routes to control your condition?
What is the extent of disease in your colon?
As a mother who experienced the worst of my disease after my children were born...It was extremely hard on
not only myself but my husband. I wouldn't change my decision to have my babies...looking back, I just wish
I could have had better control & understanding of my condition.
Posted 1/22/2011 7:23 PM (GMT 0)
This is actually the third doctor I have gone to and had the most luck with. I also take Humira, which seems to help too. What other alternate routes do you know of or have you tried?
Posted 1/22/2011 7:41 PM (GMT 0)
I would consider using a surrogate/adoption if I were on a lot of medications and couldn't safely carry a baby. I don't think the longterm effects of any of these meds are known.
Posted 1/22/2011 7:52 PM (GMT 0)
I don't know much about your condition specifically but my good friend
just had surgery this past August. She had j-pouch done. She had been
on prednisone off & on for 3 years. It was really reeking havoc on her body.
She like me has 3 kids 5 & under & just was not getting any better. We talked
alot about the future & how once the kids started school full time & begin sports...
all the running around that's going to accompany that. It's going to be a big
change from being at home all of the time in the comfort zone (with your own
potty!) Although her recovery had a few minor complications (some blood clotting
issues & common infection) she is doing fantastic! Better than EVER :) It was really
her only alternative.
Posted 1/22/2011 7:59 PM (GMT 0)
I have read that the chances of conceiving decrease after surgery. I would definitely look into this if it is something you're considering. I could be wrong.
Posted 1/22/2011 8:04 PM (GMT 0)
the topic of surgery has been discussed, but it is a last resort.
Posted 1/22/2011 8:17 PM (GMT 0)
The surgery should never be taken lightly & definitely a last resort. I admire my friend for having the
courage to say yes to it. I cannot imagine the amount of time & emotion to be spent on such a decision.
She was just sick of being sick (& she was VERY sick) not hospital sick but day to day sick for almost 4 years.
She did carry her boys while on prednisone & they turned out fine (like me she had fraternal twins).
Not sure where you live either but it may be worth looking into talking with GI specialists (maybe mt.Sinai).
Posted 1/22/2011 8:24 PM (GMT 0)
I do have GI specialist, Milwaukee Disgestive Disease, out of St. Luke's Hospital in Milwaukee. I think we have found that meds can control my disease, but it would be nice to not rely on them so much and not be on so many. I was just looking for some insight into others who have dealth with this and pregnancy. It really seems like it varies from person to person. Thanks for the help.
Posted 1/22/2011 8:27 PM (GMT 0)
Good luck to you!
Posted 1/22/2011 9:42 PM (GMT 0)
How old are you? Forget about your sister-in-law and everyone else that is having kids now. Can you wait 5 more years? I personally know several women with healthy kids and pregnancies in their early and middle 40s.
Posted 1/23/2011 6:55 AM (GMT 0)
I went off Azathioprine to try to get pregnant about 5 years ago and went into the worst flare-up of my life. However, one of my GI docs says several of his patients have had successful pregnancies and healthy babies while taking azathioprine. So far, I have not been able to get pregnant on azathioprine. I have read that it can cause infertility. I stressed for a long time about getting pregnant and now my husband and I are going to be adopting. Now I don't have the pressure to get pregnant and if it happens, that is great! If it doesn't, I will still have a child. Try and stay positive. Good luck to you!
Posted 1/23/2011 2:41 PM (GMT 0)
My husband and I are not opposed to adopting either, but we would like to try and have our own first. All I want in life is to be a mom, so it is hard not to stress. Your doctor is okay with you possibly getting pregnant while on the drug?
Posted 1/23/2011 10:13 PM (GMT 0)
both my GI and my Kidney Dr. have ok'd me to be on Azathioprine. Every med has a chance to hurt us, sulfasalazine gave me kidney disease (and that's supposed to be safer than some other meds).
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