Irritable Bowel Syndrome Message Boards | IBS-D, pregnancy and loperamide

Hi everybody!

I have had IBS symtoms off and on for years, but it didn't get really bad until about a year ago. After months of struggling with my GP I have had the necessary tests to support the IBS diagnosis. Unfortunately where I live (Uppsala, Sweden) the GI specialists don't have enough resources to deal with IBS patients and unfortunately they haven't done much to educate the GPs either it seems. I had to suggest getting on loperamide myself and really fight to get my GP to prescribe it to me although that is standard for IBS-D in Sweden. I have followed the IBS diet described by Heather for some time now though I still need my loperamide. What makes the situation even worse for me is that I got an autoimmune disease called transverse myelitis when I was a kid and this has left me with a sphincter that isn't working as well as it should which means that when things are bad, I'm in an even bigger hurry to get to the bathroom than if I "just" had IBS-D. But the loperamide has been a life saver for me. Apart from a bad period in time last winter it has made the difference between pretty much not being able to leave the apartment and having a more normal and happy life.

Now, my fianc� and I are planning to try getting pregnant next year, but I am so scared of having to be without my loperamide. Loperamide is classed as a B (in Sweden B3) drug, which means it should be avoided if at all possible during pregnancy. I think the rules are stricter in Sweden than in the US as the Swedish text on B3 drugs basically says that "it can only be accepted if the risk of not treating outweighs the potential risks to the fetus". In English I believe it says that it is allowed "if the benefits to the mother outweigh the potential but unknown risks to the fetus". Of course the only physical risk of not taking loperamide would be that my appetite would be so low that I didn't get enough energy and even that I don't think the doctors would take seriously. It's so hard. There seems to be so many things you can try that are ok during pregnancy if you have IBS-C, but for me it seems that loperamide is what is working the best. Of course I don't want to risk the health of my future baby, but I also think there is a risk that I might not even dare getting pregnant knowing that I might have to go through hell. Also, it can take months and months to get pregnant and I really don't want to go without loperamide for that long a time just trying to get pregnant. That would also make it hard for me job wise since you can't exactly be on sick leave for trying to get pregnant.

I have heard of one study in Canada where no evidence was found that loperamide would cause any harm to the fetus and I have found examples of women with Crohn's disease that have taken loperamide throughout their pregnancies without any problems, but that's all the info I have.

I'd really appreciate it if someone could give me more information on this or share their own experiences. As I mentioned above I have been on the IBS diet for some time now. I also take 4 g of soluble fiber supplement every day before breakfast (I tried a higher dose last fall but that seemed to make things worse for me). I also drink peppermint and/or anise-fennel-cumin tea pretty much every day. It just seems like I need the loperamide too.

I really, really hope some of you out there have experience of this. It seems constipation has been treated as a more serious condition by doctors since it can be potentially dangerous if it gets too bad, but there has been so little research on how to deal with diarrhea, although it can literally ruin your life. I really hope someone can help me with this or tell me how/where to find more information!

Thanks,

Ulrika

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