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anyone stay med-free during pregnancy flare? trying holistic route

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Ulcerative Colitis
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Posted 6/18/2011 4:40 AM (GMT 0)
This is my first post. I was diagnosed with ulcerative proctitis in 2000. Tried Asacol a few times, no help. Mostly found GREAT help with a Chinese herbal formula called Isatis Cooling. However had to go off it when trying to get pregnant, and sadly started flaring. Am now 20 weeks pregnant. Had about a 5 week remission from flare at the beginning of pregnancy, but have now been flaring 3 months. My flares are mild: diarrhea 2-3 times a day, with a few drops of blood. Sometimes a more formed stool with a little blood and/or mucous. I usually just live with it and take immodium a couple times a week, plus a variety of supplements & probiotics.

The difference is being pregnant now - so many things are contraindicated, plus I worry if I am wrong to pursue this route. One GI was super alarmist about pre-term birth and low birth weight. But so far the baby is measuring perfectly, and my disease is mild. Studies on problems for the fetus always refer to "severe" disease or flare. I cannot find anyone writing about sticking to a holistic approach during pregnancy and would love to hear about it.

What I am doing right now is custom made probiotic suppositories, custom vitamin E suppositories, and Jini Patel's "Stop Bleeding" diet. I find that I will have about 3 days without diarrhea, slower bowels, even mild constipation, and decreasing blood, then the 4th day I swing back to diarrhea and blood - though relatively speaking not severe, i.e. only 2-3 movements and only feeling slightly sick during the diarrhea.

Input? Thanks!
Posted 6/18/2011 12:30 PM (GMT 0)
I don't know of any women who have managed their UC holistically during pregnancy but I know of a lot of women who took their maintenance meds during pregnancy and had full term babies that were born healthy.

Sue
Posted 7/7/2011 4:34 PM (GMT 0)

Hello ulcproc200,

Did you ever find relief, as I am on the same boat as you? 

Posted 7/7/2011 6:39 PM (GMT 0)
ulcproc200,

There are a few other things you could add to your alternative protocol, IMO:

1) Slippery elm bark powder - a couple times a day.

2) L-Glutamine 15 grams to help with colonic repair.

3) omega 3 or krill oil - 2 grams per day.

4) Check out 5-LOXIN, it's an anti-inflammatory.

5) Make sure to get your Vitamin D3 levels checked, as there is a strong connection between low D3 levels and IBD.

6) Good probiotics, like VSL#3 - which contains 450 billion active cultures.

7) Have you thought about Transdermal LDN? It's very effective too. If you need the links, I'll be glad to post them for you.

8) Keep a food journal - so you can see what agrees and disagrees with you, and see the correlations.

9) Try the SCD diet - specific carbohydrate diet, and if that's too rigorous, then do dairy and wheat free.

10) Lastly, look into food combining, or  rather mis-food combining. Here's a good explanation of it:

http://cureforulcerativecolitis.com/step-1-methodology-to-eating

Let me know if you need further info.

And keep us apprised of your progress.


 

Posted 7/7/2011 6:41 PM (GMT 0)
I'd do probiotics and very strict diet - the baby can grow just fine on protein, cooked veggies and good fats (olive oil, fish oil). Always check with ob-gyn and GI
Posted 7/7/2011 10:52 PM (GMT 0)
insofla, have you taken slippery elm powder? i was taking about 500 mg a day but didn't notice much of a difference. i am currently not taking any prescription meds but i'm on various supplements and none seem to be helping. i'm seeing a new doctor on monday (worried about all the meds he'll want me on) but it seems that my holistic approach hasn't done anything.
Posted 7/7/2011 11:38 PM (GMT 0)
bananagirl,

Yes, I do the organic slippery elm bark powder  in some water, not the pills. IMO, that makes all the difference in the world because slippery elm bark powder is nature's mesalamine. If you drink it down as a liquidy gel-like substance, it coats the whole digestive track. So I do that 3 x daily.

Maybe you should try the actual powder instead of capsules, you might find it more effective?

Have you tried probiotics like VSL#3? Which other supplements have you tried that haven't worked for you,

any of the ones I mentioned in my prior post?

What's your diet like? IMO, that's very important.

And then, believe it or not, food combining is key too.

I hope you'll like the new doc. Let us know what happens. Good luck.


 

Posted 7/8/2011 1:56 AM (GMT 0)
What I'm worried about mostly is the price you are paying nutritionally for this approach. Nature has wisely determined that your fetus will get minerals and vitamins before you do; many women will develop dental caries during pregnancy because calcium is being sent directly to the growing baby and not your teeth. I'd be worried about you losing bone mass and other nutritional stores, including iron (anemia is pretty common in pregnancy and you're increasing the risk since your colon is bleeding). Finally, once your baby is born the odds are pretty high that you will go into a more severe flare than what you have now.
Posted 7/8/2011 2:02 AM (GMT 0)
insofla, i am seeing my naturopath next week and will see if she has the powder form. i was taking a capsule that was a mixture of licorice root, marshmallow root, and NAG. i'm sure the new doctor will want me on prednisone again and i'll just have to shoot myself in the head listening to him talk about it.

i am currently taking turmeric, NAG, l-glutamine, b-12 drops, and aloe. i was taking acidophilus but read that its useless if my colon is so inflamed. also, my naturopath said not to bother until my condition has improved.

my diet is basically Absorb Plus shakes. they are whey protein shakes. i also have broths, mango/peach smoothies, tiny noodles sometimes, hummus. i don't eat a lot. all of my meals are less than a cup. i used to be a raw vegan for 2 years but i stopped that because the food prep was too tiring for me and i wasn't feeling any better. i was eating large amounts of fruits/veggies (about 10-15 lbs a day easily). i was pretty crazy about food combining too, but lately, if i can swallow it without throwing up, i will eat it.
Posted 7/8/2011 11:39 AM (GMT 0)
bananagirl,

I am concerned that you are not getting enough rounded nutrition. I looked up Absorb Plus, seems pretty well rounded, the only thing that concerns me is their maltodextrin. And I am also concerned about your not getting the good fats your brain needs in order to function. You need omega 3's or krill oil, around 2 grams, imo.

Are you able to add any proteins you can eat: perhaps a steamed piece of salmon, grilled lamb chop?

Can you tolerate eggs? I can't tolerate egg whites, however do very well with egg yellows - which are full of fat, cholesterol, good things for you, so I separate out the yellows from the whites and will cook 3-4 egg yellows twice a week.

What are you using to make your smoothies, juices, regular milk, or almond milk? Almond milk would be good for you too.

Perhaps you can add a good artic cod liver oil (some comes flavoured with slight orange or lemon flavour) - 2 teaspoons a day, it might help round out your requirements for good fats?

The acidophilus was probably in pill form, right? Why not consider adding the powdered form of probiotics like VSL#3?

Posted 7/8/2011 8:34 PM (GMT 0)
insofla, i make the shakes with water and udo's oil or flax oil. i don't eat meat or eggs and i'm afraid to add them back to my diet because i haven't had them in so long- about 4 years. i am getting a food allergy test done on monday hopefully so i am waiting to add new foods until i know what i can eat. but i agree, i am VERY malnourished and i don't get rounded nutrition at all. my diet is horrible because eating just makes me really sick.

i'll probably do just liquids all weekend because i can't stand eating actual food. it's too much work for my colon and gives me more pain than i already have.

the probiotics were in pill form. i just don't see a point in taking one if i still have such bad inflammation. once it's down, if it ever goes down, i'll add one back into my supplement plan.

my dad called me last night with his theory on why i'm sick. i have pesticide poisoning from eating too many fruits and vegetables. he called the poison control center and was complaining about all the crap that is sprayed on everything and what it's done to me. do you think pesticides could cause this?? i mean, i never bought organic if the fruit had a peel, but i always did if it was something like spinach.
Posted 7/8/2011 11:43 PM (GMT 0)
bananagirl,

I'm sorry you are in such distress and pain.

And send you a big hug.

Getting a food allergy test is a great idea - this way you'll at least know what to stay away from.

The probiotics is to help with the inflammation too by adding some good bacteria, no?

I know your dad is probably desperate to help you and find out WHY you got this, and I understand.

I don't know enough about the pesticide connection, maybe....

Were you ever on Accutane? It's known to cause UC.

Were you ever on Cymbalta for depression?

I hope once you find out what your food allergies are, we can figure out a way to boost your nutrition.

Stay in touch. And take good care.

Posted 7/20/2011 8:58 PM (GMT 0)
Thanks for all the replies - my email notification did not work, so I am just now seeing these! I appreciate all the recommendations. The only one I have not tried before is 5-Loxin. I'll check it out.

@pinkmoon:
I finally broke down and started 25mg hydrocortisone rectal suppositories 1x per day and about to go up to 2x per day. I have been assured these do not cross the placenta and should have virtually no side effects for me. After 2 weeks I am having some improvement in my bowel movements (less frequent) but not in the blood. I am passing several drops of blood with mucous many times a day, but my GI is very optimistic and unconcerned. She says as long as I can keep the anemia mild or better, and as long as the baby continues to measure perfectly and I put on a little weight, all is well. I stopped doing the "stop bleeding" diet and at the same time stopped magnesium supplements. Since then no diarrhea, and have put on 3 pounds. I am eating a healthy and varied diet, and have good days and less good days in terms of how tied I am to the toilet. Mostly am at about 10 Bm per day, but no significant pain with it. Just tender bowel all the time, possibly from being so compressed by baby!

Tell me, have you found any relief? How severe is your flare?
By the way, I am still doing my alt approaches, and seeing a new acupuncturist with new ideas to try... but basically reassured that bleeding as I am is not the end of the world.
Posted 7/20/2011 9:02 PM (GMT 0)
@pinkmoon:
ps - I will never go back to that alarmist GI again - I have since heard she has a reputation for being very dogmatic and not working with individual differences. I am back to my regular GI (who had been on vacation).
Also I am now being managed by a high risk OB and that has been reassuring, including the more frequent monitoring of baby's growth. I recommend having a great team of people who tell it straight but are non-alarmist and will work with your concerns.
Posted 7/20/2011 10:01 PM (GMT 0)
bananagirl,

i am seeing my naturopath next week

How are you feeling?

Did you get to see your naturopath?

What's your status?

Posted 7/22/2011 8:48 PM (GMT 0)
I managed to stay off meds for my whole pregnancy. Just took high doses of probiotics. But I flared like crazy after I gave birth. Just a heads up that lactation can exacerbate flares, and the shifting hormones also do a number. Every time I breast fed my intestines cramped up and I had to run to the toilet. I ended up in the ER from dehydration. In any case, good luck with the rest of your pregnancy, and definitely take some oral probiotics in addition to the rectal ones.
Posted 7/23/2011 8:05 PM (GMT 0)
Sicktree,

Just took high doses of probiotics

Just curious, what kind of dosages?

Posted 7/24/2011 4:22 AM (GMT 0)
I guess not high by UC standards, but pretty high. Between 3-9 capsules of 8 billion cultures most days, then 1-3 50 billion cultures when I was feeling more iffy, and 1 100 billion packet a day when I was feeling more iffy. Most of the time I was at the lower level though. I don't stick to any particular brand, I just tend to switch around with good ones. I also took fish oil and really high quality prenatal vitamins while I was pregnant.
Posted 7/24/2011 4:24 AM (GMT 0)
Oh, and my baby was born very healthy and 7 pounds, one ounce, full term (4 days past my due date). She has very healthy guts. We've given her probiotics since she was 10 days old.
Posted 7/24/2011 12:56 PM (GMT 0)
Sicktree,

great - glad she is so healthy! :-)

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