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Flare during first trimester pregnancy, chinese herbs

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Ulcerative Colitis
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Posted 3/18/2016 3:26 PM (GMT -5)
I have been taking chinese herbs to treat my ulcerative colitis with good results since november. I became pregnant and am currently 9 weeks. My chinese herbalist said they were safe to continue taking, until today she says its safest to not take it. I realize it is safest for the baby to not take anything but I worry about stopping now since my symptoms have worsened since becoming pregnant. I really am not sure what to do.

Has anyone taken chinese medicine early in pregnancy without any adverse affects? Will my flare remedy itself by the second trimester anyway if I stop?
Posted 3/18/2016 3:38 PM (GMT -5)
Here are the simple facts. UC meds have been studied extensively and we know that all except for methotrexate are safe for pregnancy. Chinese "herbs" have for the most part not been studied so we really have no clue. We also know that a UC flare is worse than any med you can take with regard to the babys health. If you want to do whats best for your baby, go see a real GI who knows what they are doing with IBD and pregnancy.
Posted 3/18/2016 3:43 PM (GMT -5)
Well said Marauder, I completely agree with your post and advice.

You need to find a IBD-GI and a OBGYN that is familiar with treating mothers with IBDs.
Posted 3/18/2016 3:55 PM (GMT -5)
Thank you for your inconsiderate replies. Since you know nothing about my health history and the fact that I have seen many Gi's who have led me nowhere but to more and more meds, I am looking to hear from women who have shared my experience. Chinese herbs were the only things that work me. I realize this is a public forum so you are free to comment to whoever you like, but I tried to be very specific in my title since I am looking for those opinions only.
Posted 3/18/2016 4:08 PM (GMT -5)
Congrats on your pregnancy and being in remission!! We all get there with different modalities and that is just the way of UC. I don't know too much about Chinese herbs (although I would be curious if you know what herbs you are taking as it could help someone) but I did have a thought if you are open. The low level mesalamine drugs (oral/rectal) are safe"ish" drugs and safe for baby. Now that you are in mostly remission...I wonder if they may be able to push you back to a good place. Possible they couldn't get you into remission but maybe can keep you in the reasonably good place you are now. It is a little scary not to take anything, imo. Did the herbalist give you any new ideas for what you could take that was safe?

It seems that it is impossible to predict what will happen during pregnancy. Some do better UC wise, some flare badly.

I hope you will continue to do well!!!
B
**Edit to write that I know you said you worsened but I got the impression that it isn't too severe and you want to make sure things don't get out of control. If things are getting really bad- then maybe a new plan.

Post Edited (hateuc) : 3/18/2016 3:15:54 PM (GMT-6)

Posted 3/18/2016 4:11 PM (GMT -5)
I'm sorry that you feel that people's responses were inconsiderate Bummis, and I understand what it feels like to have an effective treatment taken away when you need it most. However they are right in that Chinese herbs are not tested in pregnancy, they may work for you, but you don't know what they do to a developing baby and that I'm sure that is your ultimate priority at the moment. It may not be ideal but I also agree that the safest thing you can do right now is stick with the things that have been shown time and time again to be safe in pregnancy, the risk is just not worth it.
Posted 3/18/2016 4:17 PM (GMT -5)
I went to an acupuncturist and was taking some Chinese medicine right before I got pregnant. I ended up quitting because 1) the acupuncturist was unorganized and scatter brained and it was a turn off, 2) I didn't see results quick enough and it was expensive so I just quit. My baby is now 4 months old and luckily I didn't flare during pregnancy (but I'm now in a flare). It's hard to recommend anything because what worked for me in the past and what worked for me now was not while I was pregnant. I'm enjoying Dr. McDougall's diet right now but have no idea how it is going to affect my flare yet since it's only been a few days since I started. Look into Ayurveda clinics in your area. Or a Chinese doc that can recommend diet instead of supplements. Keep moving. Do lower body stretches and yoga, and meditation.
Posted 3/18/2016 5:09 PM (GMT -5)
Congrats on your pregnancy! While I can't talk about Chinese herbs, I can try to answer your other question regarding your flare stopping in the 2nd trimester. I am also pregnant (about 30 weeks) and have flared for most of the time.

My doctor who is at the top of his field said to me that 70% of patients who were not in stable remission before pregnancy will flare during it. He also told me that the 2nd trimester is when the flare can actually get worse because this is when the baby's immune system develops enough to affect yours. So,most likely your flare will not go away by itself once it has started during pregnancy.

If I were you, I would do anything you can (safely) to control your flare. I ended up on prednisone because mine got so bad and, as you know, you don't want to deal with that late in pregnancy (or at all). Not a lot of fun.
Posted 3/18/2016 6:53 PM (GMT -5)

hateuc said...
Congrats on your pregnancy and being in remission!! We all get there with different modalities and that is just the way of UC. I don't know too much about Chinese herbs (although I would be curious if you know what herbs you are taking as it could help someone) but I did have a thought if you are open. The low level mesalamine drugs (oral/rectal) are safe"ish" drugs and safe for baby. Now that you are in mostly remission...I wonder if they may be able to push you back to a good place. Possible they couldn't get you into remission but maybe can keep you in the reasonably good place you are now. It is a little scary not to take anything, imo. Did the herbalist give you any new ideas for what you could take that was safe?

It seems that it is impossible to predict what will happen during pregnancy. Some do better UC wise, some flare badly.

I hope you will continue to do well!!!
B
**Edit to write that I know you said you worsened but I got the impression that it isn't too severe and you want to make sure things don't get out of control. If things are getting really bad- then maybe a new plan.

Thanks for your reply B :) The herbs I am taking are these https://www.activeherb.com/shenling/. After my pregnancy I expect my condition to worsen so I would probably take these in conjunction based on my chinese herbalists recommendations https://www.activeherb.com/buzhong/.

I appreciate your recommendation on the low dose mesalamine. Unfortunately I seem to be one of those people who has the opposite affect with a worsening of symptoms. It took amount of trial and error to figure that out. My condition is still limited to the lower sigmoid but I do worry this pregnancy might worsen it.
Posted 3/18/2016 7:25 PM (GMT -5)
How about trying rectal meds? I agree with the others, I wouldn't want to take anything that could have unknown effects on the fetus. I am not big on the UC drugs during pregnancy either, but research shows it's safer to be on these meds, than it is to be in an unmanageable flare up. At least mainstream UC drugs have been studied. If you're having symptoms, and they've recently increased, I do not see why they would get better without treatment. Perhaps pregnancy hormones will help. You really do not know which way it will go - nor does the doctor/herbalist. Only time will tell. I personally would try to do something to prevent the worst.

it seems like you want us to say go ahead and keep doing what you're doing but I absolutely would not take herbs that haven't been studied while pregnant and I absolutely would see a GI doctor.
Posted 3/18/2016 7:31 PM (GMT -5)

goneundone said...
I went to an acupuncturist and was taking some Chinese medicine right before I got pregnant. I ended up quitting because 1) the acupuncturist was unorganized and scatter brained and it was a turn off, 2) I didn't see results quick enough and it was expensive so I just quit. My baby is now 4 months old and luckily I didn't flare during pregnancy (but I'm now in a flare). It's hard to recommend anything because what worked for me in the past and what worked for me now was not while I was pregnant. I'm enjoying Dr. McDougall's diet right now but have no idea how it is going to affect my flare yet since it's only been a few days since I started. Look into Ayurveda clinics in your area. Or a Chinese doc that can recommend diet instead of supplements. Keep moving. Do lower body stretches and yoga, and meditation.

Wow you are very lucky to not have flared during pregnancy. I'm sorry to hear you are going through it now. That's kind of how my first pregnancy went too. I was in remission for 10+ years. The doc didn't even think I had UC anymore. Got pregnant then 14 months postpartum, UC came back. That was 3 years ago and I've been struggling with it ever since. I've also tried pretty much all of the diets you tried, and keep coming back to SCD. I'm hoping another pregnancy might reverse what the first one triggered. Are you on any meds? I was really surprised the chinese herbs worked for me. Maybe if you find someone more organized you may something that works for you. Congrats on your baby! I hope you are enjoying motherhood despite the health set back.
Posted 3/18/2016 7:35 PM (GMT -5)

Worriedgirl3 said...
Congrats on your pregnancy! While I can't talk about Chinese herbs, I can try to answer your other question regarding your flare stopping in the 2nd trimester. I am also pregnant (about 30 weeks) and have flared for most of the time.

My doctor who is at the top of his field said to me that 70% of patients who were not in stable remission before pregnancy will flare during it. He also told me that the 2nd trimester is when the flare can actually get worse because this is when the baby's immune system develops enough to affect yours. So,most likely your flare will not go away by itself once it has started during pregnancy.

If I were you, I would do anything you can (safely) to control your flare. I ended up on prednisone because mine got so bad and, as you know, you don't want to deal with that late in pregnancy (or at all). Not a lot of fun.

Congrats on your pregnancy as well! I'm sorry to hear it's been one long flare. That is so difficult, I can't even imagine. Wishing you the best of luck and hopefully the end of the flare by the time baby comes.
Posted 3/18/2016 7:44 PM (GMT -5)

notsosicklygirl said...
How about trying rectal meds? I agree with the others, I wouldn't want to take anything that could have unknown effects on the fetus. I am not big on the UC drugs during pregnancy either, but research shows it's safer to be on these meds, than it is to be in an unmanageable flare up. At least mainstream UC drugs have been studied. If you're having symptoms, and they've recently increased, I do not see why they would get better without treatment. Perhaps pregnancy hormones will help. You really do not know which way it will go - nor does the doctor/herbalist. Only time will tell. I personally would try to do something to prevent the worst.

it seems like you want us to say go ahead and keep doing what you're doing but I absolutely would not take herbs that haven't been studied while pregnant and I absolutely would see a GI doctor.

It would be nice to hear from someone who has actually taken herbs throughout pregnancy to hear their experience. I wouldn't be so quick to undermine Chinese medicine. They have documented the function of their herbs in ways that are not appreciated by today's "scientific community", but it does not mean that their methods are wrong. Obviously I also have my reservations about taking them but it is the only thing I've taken in 3 years that has helped me.
Posted 3/19/2016 6:51 AM (GMT -5)
Bummis, I don't think there's a lot of experience with Chinese traditional medicine (ctm) on this forum. So, I wouldn't expect a lot of answers about it. Occasionally, i'lI see a one-off post about it (like this one), but it's not a regular discussion here. I don't believe anybody is deliberately trying to be mean or rude to you, we're just trying to be helpful with what we do know. I'd appreciate it if you weren't rude with your responses.
Posted 3/19/2016 8:01 AM (GMT -5)
Thanks for the info Bummis! I don't know about during pregnancy, but there is another member here with the screen name Scarecrow that takes Chinese Herbs and has had good luck with them. I think Scarecrow is a woman--maybe there is a way to reach out to her.

Hope you can heal up so you can enjoy your pregnancy....it is such an exciting time of life!
B
Posted 3/19/2016 10:19 AM (GMT -5)

Bummis said...
It would be nice to hear from someone who has actually taken herbs throughout pregnancy to hear their experience. I wouldn't be so quick to undermine Chinese medicine. They have documented the function of their herbs in ways that are not appreciated by today's "scientific community", but it does not mean that their methods are wrong. Obviously I also have my reservations about taking them but it is the only thing I've taken in 3 years that has helped me.

I am someone that RX meds has never helped much but here's the thing--you are looking for validation to keep taking herbs and that is not a good idea even if one person responds they did OK. You cannot rely on one person's response or 2 or 3, you don't know them, they could say anything and might/might not be true. Medical studies, which MD's rely on, are the safest way to protect your developing fetus as well as your own health.

When you are new here it's a good idea to write a "Profile" so people see a bit of your history. Getting mad at people because they don't know what you've already tried is not beneficial to anyone.

Mesalamine enemas would be the first thing to try, they don't enter your bloodstream and get right to the area that needs help. If you have already tried them with poor results then how could I know that unless you state that in your Profile. Any good GI will want to do a colonoscopy ASAP to see what state your colon is in before dispensing meds so make an appointment and talk to one next week.

Best wishes on your pregnancy.

Edit to add: I tried Chinese herbs from a doctor of TCM in Florida with no improvement but have been open to any/all treatments that don't seem harmful. But never been pregnant which changes a lot.

Post Edited (imagardener2) : 3/19/2016 9:23:18 AM (GMT-6)

Posted 3/19/2016 11:30 AM (GMT -5)
Didnt realize that looking out for the healthy of your unborn baby was inconsiderate but ok whatever you like...

Ill leave this here for you to explore: http://www.ncbi.nlm.nih.gov/pubmed/16398988
Posted 3/19/2016 2:59 PM (GMT -5)
Your title doesn't specifically list "Chinese herb users only," so you'll get a variety of responses from different people.

We do not have a lot of knowledge of or experience in CH. I know a few people who have dabbled with them, but that's it. There's a good chance that, since they aren't helping you now, you may need something more than just herbs, and some people have listed the options, but we don't know your history since you have no signature.

Like Ima said, you can't rely on a few responses; we do not have a lot, or any, research on CH and pregnancy. We don't know what the risks are to the baby. And there's always a chance that CH have a high concentration of pesticides in them, and you should consider that risk, too. If your herbalist is telling you to stop taking them, get off of them. That person possibly have several years of experience dealing with CH, and they are your expert.

We aren't being inconsiderate. We're trying to give you advice from our successes and failures. You asked for advice, and we gave it. I'm sorry that you thought that way. I'm not writing this post to incite a fight with you. I'm just explaining why, in their posts, some people have listed additional information that you haven't asked for.

I hope you find something that works, and I hope your have a great pregnancy. Good luck. :)
Posted 3/19/2016 9:03 PM (GMT -5)
I think if your herbalist said to stop taking them, that's probably sound advice.

You said a GI told you that 14 years with no symptoms might mean your UC is gone? UC never goes away, it's a life long disease with periods of flares and remission. I can see why you wouldn't trust that particular doctor.

Sue
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