# 4 - PERSONALIZING "SCD" > * PREGNANCY, IBD & SCD


(Posts from an SCD listserve)

Simone,

 

I don't have exact facts and figures, but will write what I remember and look it up sometime later.

 

If one parent has IBD, the chances of your child contracting it is not much greater than the normal population.  Both parents with IBD tilt the scales much higher.

 

You also can greatly prevent IBD by breastfeeding exclusively the first

6 months, and for as long as possible afterwards (preferably a minimum of 1 year.  The World Health Organization recommends a minimum of 2). You will also be preventing allergies, asthma, and many more diseases. Autoimmunity does not have only genetic components, but is highly influenced by diet in the first year (and afterward).  They say the immune system is "layed down for life" during this time.  Hence the importance of breastfeeding (and a mother's diet during pregnancy and breastfeeding.)

 

Not following the guidelines of the given immunization schedule will also greatly reduce your child's chances of developing an autoimmune disease (including autism.) That is a discussion too long to get into.

 

That said, I had my first child at 25; conceived only 3 months after weaning from Prednisone.  I had been very sick the 4 years before that, and was told by the leading specialist at UCSF at the time, that I needed to take a medication that would automatically abort my fetuses, and I would have to stay on it for at least 7 years or suffer terrible flare-ups in coming off it. (self-injected methotrexate.)  He scared the hell out of me, and I found the SCD.

 

I got off of Prednisone, didn't taper to Sulfasalazine or anything, had my first normal poops for years, and oops! got pregnant! (I had been so sick that wasn't even a medical option the years before.) Lots of soul-searching, with everyone convincing me to abort due to my health, my then boyfriend at the time and I decided to go ahead with the pregnancy, and just trust that it was a gift.

 

Unfortunately, in the fifth month of my pregnancy, I had a binge of non-SCD foods and created a flare-up, which caused my uturus to go into pre-term labor. So I went on bed-rest, started sulfasalazine, and had a healthy and normal baby, without any medications during labor. And continued to eat about 80%-SCD like an idiot (I really didn't understand the importance of strictness at the time),

 

I had bloody diarrhea for 5 months post-partem (because I had come off of Sulfasalazine since my doctor told me I could not nurse on it.) Everyone was pressuring me to give my baby a bottle so I would heal, but I would not.  I was making plenty of milk, and I had my pregnancy weight to lose, so was not really that sick. My little girl was making chubby legs. I finally got a female pharmacologist who told me that sulfasalazine stays in the gut; the amount found in the breastmilk is pretty much non-existant, and besides, there are very few medications that pass into breastmilk that are worse than bottle feeding would be for my baby.

 

Anyway, I took Sulfasalazine for a year and was pretty healthy and stayed on a near SCD diet for 2 1/2 years, nursing the whole time. Then I got pregnant with my second daughter. (This time planned.) After her birth, I again had a flare-up, but never had a return of bloody diarrhea, just increased stool frequency, pain, fevers, night sweats. I still made breastmilk and nursed exclusively. I again was reluctant to take medication (for way too long), and suffered more than I should of, before I tried sulfasalazine. (You think I'd have learned...)

 

I have just weaned my second daughter (at 2 years 4 months) several months ago. So, despite a very cryptic diagnosis of CD, I have been pregnant or nursing for almost 7 years straight. Now, remember, all of my horror stories happened when NOT on SCD. I have a very supportive husband, and had my mom come and stay with me for the worst part of it all.

 

That said, I have the healthiest two little girls.  They have always eaten organic, whole foods, and now that I am back 100% SCD, they eat right along with me. I have to add that my brother's children (my brother having no health problems) have been on multiple antiobiotics, prednisone for croup episodes, and are generally much less energetic than my own. I find this is common in many children with completely "healthy" parents.  My children have never needed medication. (One is almost 6, the other 2 1/2) except Tylenol for the occasional scary fever.

 

Crohn's disease does have genetic proponents.  We are likened to the canaries in the coal mine. Because of the vast change of our diet to heavily processed starches, we are more likely to react to bacterial overgrowth.  None of my family has Crohn's, though we wonder if my grandfather didn't suffer from it in the 1920's.

 

But until we take into consideration diet, vaccinations, the toxidity of the modern world, we cannot base a decision on the outcome of our children on solely genetic factors.

 

Deciding whether or not to have children is a highly personal matter, whether or not you have a genetic disease.  We all have some genetic malfunctioning; you may have a predisposition for this horrible disease, but how many other families pass along cancer, diabetes, heart disease, etc? How many completely healthy mothers have children with Down's syndrome? Or autism for that matter?

 

As difficult as it has been, I am so blessed I have had children in my 20s.  Now, I can enjoy them while I am young, and as I am healing on this diet, the future seems that much more fun.  My sister who has no health problems has been trying to conceive unsucessfully for 2 years! She has had her health but envies my fertility!

 

We never know why we are blessed with what we are. I would never have become this knowledgable about natural childrearing, breastfeeding, immunizations, diet, had I not suffered from Crohn's disease.  I am educating my entire family.  I think I am creating healthier generations, even if my body has been the "sick canary" for this one.

 

I would get pregnant if you want to.  The joys are indescribable, and the hard parts have just made me stronger. I will be more cautious with my children than most others probably do, but thank God they have me for a mom!  They think McDonalds is a farm.

Debora

RE:  Breastfeeding and IBD meds  - Prednisone

 

Ritu,

I am researching your questions re: breastfeeding and IBD meds.

I am a Board Certified Women's and Children's Nurse Practitioner,  Maternal Child Health Clinical Nurse Specialist and Board Certified Lactation Consultant.

 

I am so happy to hear you have decided to breastfeed.   There is a great deal of research to show that bf will dramatically decrease your child's risk of developing IBD.

 

I always advice mothers to research the medications that may be excreted in their mother's milk.   There are many factors to weigh to determine if that med may be a problem for the baby.

As others have responded to you, many mothers may be able to use medications during bf without any adverse reactions in their infants.    I always advice moms to get a hold of the facts, discuss the risks with your GI Doctor and Pediatrician and then determine and choose whichever med will have the least effect on your infant.

You should not have to choose between taking the med you need and breastfeeding.   You may be able to work w/ your Doctors to find a med that will work for you without causing problems to your baby.

 

I always advice Mom who are taking meds while bf to observe their baby closely for any adverse reactions.

This could happen with virtually any medication in any baby.   No medical intervention is without risks.

So weigh the risks to your baby and benefits to you carefully.

 

I will quote from "Medications and Mothers' Milk" 2000 by Thomas Hale, PhD, R.Ph.

 

Prednisone:  Deltasone, Meticorten, Orasone

 

Prednisone is rapidly absorbed and metabolized to the active form, prednisolone.  It is known to be secreted into human milk in very sm. amts.   Studies currently suggest that prednisolone levels in milk most closely correlate w/ the 'free' fraction of prednisolone in the mother's plasma.  Thus as the doses increase, the free fraction increases at a more rapid rate.  At doses of 10-20 mg, the milk/plasma ratio was 0.1, while at doses of greater that 30-80 mg, the milk/plasma ratio was elevated to 0.2.  Based on the data from a pt receiving 80 mg per day, the amt an infant would ingest would be approximately 10 micrograms/kg, which is only 10% more than endogenous corticosteroid secretion anyway.  Introduction of a 4 hr wait following administration would significantly lower risk.

 

Two hrs after a 10 mg oral dose of prednisone, the concentration of prednisolone and prednisone were 1.6 micrograms/L and 26.7 micrograms/L respectively.  Using this data, an infant consuming 1 liter of milk daily would ingest 28.3 micrograms of the two steroids, an amt that would be clinically insignificant.  In a mother receiving a high dose of 120 mg/day fo prednisone, breastmilk levels of steroid ranged from 54.1 to 627 micrograms/L at 30 min. and 2 hrs respectively.  Assuming the infant nursed 120 cc every 4 hrs, total possible ingestion would be 47 micrograms, an amt that would not be hazardous.

 

Doses of 80 mg/day in mothers produce insignificant absorption in infant (less that 0.1% of dose).  In sm doses, steroids are not contrindicated in nursing mothers.  Whenever possible use low-dose alternatives.  Following administration, wait at least 4 hrs if possible prior to feeding infant to reduce exposure.

 

Pregancy Risk Category:  B

 

Lactation Risk Category:  L2

                                          L4  for chronic very high doses

(L2  -   Safer:  Drug which has been studied in a limited number of bf women without an increase in adverse effects in infant.   And/or, evidence of a demonstrated risk which is likely to follow use of this medication in a bf woman is remote.)

(L4  -  Hazardous:    There is positive evidence of risk to a bf infant, or to breastmilk production, but the benefits from use in bf mothers may be acceptable despite the risk to the infant (e.g., if the drug is needed in a life-threatening situation or for a serious desease for which safer drugs cannot be used or are ineffective.)

 

Theoretical infant dose:   4.2 micrograms/kg/day

 

Adult concerns:  in pediatrics; shortened stature, GI bleeding, GI ulceration, edema, osteoporosis

 

Pediatric concerns:  none reported via breastmilk.  Limit dose and length of exposure if possible.  High doses and durations may inhibit epiphyseal bone growth, induce gastric ulcerations, glaucoma, etc.  Use of inhaled or intranasal forms when possible to limit exposure.

 

Adult dosage:  5-60 mg daily

---------------

I will quote from

"Drugs in Pregnancy and Lactation"  by Briggs, Freeman and Yaffee    5th Edition, 1998

 

Trace amts of prednisone and prednisolone have been measured in breastmilk.   Following a 10 mg oral dose of prednisone, milk concentrations of prednisone and prednisolone at 2 hrs were 26.7 and 1.6 ng/mL respectively.  The authors estimated the infant would ingest approximately 28.3 micrograms in 1000 mL of milk.  In a second study using radioactive-labeled prednisolone in seven pts, a mean of 0.14% of 5 mg oral dose was recovered/L of milk during 48-61 hrs.

 

In six lactating women, prednisolone doses of 10-80 mg/day resulted in milk concentrations ranging from 5% to 25% of maternal serum levels.  The milk:plasma ratio increased w/ increasing serum concentraitons.  For maternal doses of 20 mg once or twice daily, the authors concluded that the nursing infant would be exposed to minimal amts. of steroid.  At higher doses, they recommended waiting at least 4 hrs after a dose before nursing was performed.  However, even at 80 mg/day, the nursing infant would ingest less than 0.1% of the dose, which corresponds to less that 10% of the infant's endogenous cortisol production.

 

A 1993 report described the pharmacokinetics of prednisolone in milk.  Following a 50 mg intravenous dose, an average of 0.025% (range 0.010%-0.049%) was recovered from the milk.  The data suggested a rapid, bidirectional transfer of unbound prednisolone between the milk and serum.   The investigators concluded that the measured milk concentrations of the steroid did not pose a clinically significant risk to a nursing infant.

 

Although nursing infants were not involved in the above studies, it is doubtful whether the amts measured are clinically significant.  The American Academy of Pediatrics considers prednisone to be compatible with breastfeeding.

 Carolyn   CD?/SCD   7mo

Yes, call your local La Leche League leader and ask her to look up prednisone in the reference Medications and Mother's Milk by Hale.  If you need a local LLL number, call 1-800-laleche or www.lalecheleague.org.

I believe prednisone is safe for nursing mothers, but I don't have the dosage info available right now.  Please check it out with your local LLL.
---------------------------

To the woman who wrote in about needing Prednisone and breastfeeding: There should be lots of information if this medication is safe.  I don't remember where you live, but La Leche League is an international breastfeeding support organization that provides the most up-to-date information on drug interactions and breastfeeding.  They should have a toll free number, and can help you feel comfortable about choosing a medication that can help you during a flare-up.

 

I remember what it was like having bloody diarrhea 5 times a day and struggling to nurse my newborn.  Because studies have shown that breastfeeding prevents IBD, I was determined to continue breastfeeding. However, there was only one study on sulfasalazine and breastfeeding at the time, and it was of only 7 babies I believe, one of which had a problem with it.  So my doctor and pharmacist advised weaning to make sure, which I was loath to do.  So I suffered for 5 months (miraculously still making lots of milk) until I found a pharmacologist who looked into this medicine and said that it barely even came out of the digestive system and was totally safe to breastfeed with.  Within 10 days I was better. And my baby was fine. So, do a little research.  You are probably suffering needlessly. You might need some temporary medication to act as a bridge as the diet heals you in time.

 

Good luck, and you are wonderful in choosing to nurse your baby! May your baby be strong and healthy his/her whole life! Thanks to his/her mama, and her wonderful, delicious milk! (the original SCD!)

Simone wrote:  For this reason I decided never to have children because I wouldn't want to pass on to them my Crohn's.   Neither of my parents have IBD.  I know my mother would never have said that she didn't want me.

 

KUDOS TO THAT!!! NOT ONLY AM I SURE THAT MY PARENTS WOULD NOT HAVE

TERMINATED MY PREGNANCY, BUT I WOULD NOT CHOSE TO TERMINATE A PREGNANCY DUE TO A GENETIC FACTOR, EITHER.  I WOULD ALSO NOT CHOSE TO TERMINATE MY OWN LIFE, EVEN THOUGH UC CAN BE MISERABLE AT TIMES, IT’S NOT WORTH DYING OVER, AND I WOULDN’T EVEN CONSIDER IT.

Simone wrote:  I'm 32 right now, and I don't have too much time to decide whether to have a child...

 

I DISAGREE THAT 32 IS SHORTENING YOUR TIME TO DECIDE.  I’M 34, AND ON MY 2ND PREGNANCY.  WE WOULD LIKE TO TRY AGAIN TO HAVE A SON, BUT MAY CUT OFF AT 3 CHILDREN (NOT BECAUSE OF AGE, BUT MORE BECAUSE OF FINANCES.  FRANKLY, I DON’T THINK I WAS READY IN MY 20s, BUT THAT’S ME.  I DIDN’T DO A WHOLE LOT OF BABY-SITTING OR SUCH, AND THAT MAY HAVE HAD A FACTOR, BUT I JUST DON’T THINK I WAS MATURE ENOUGH.

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Debora wrote:  That said, I had my first child at 25; conceived only 3 months after weaning from Prednisone.

 

I CONCEIVED WHILE ON PREDNISONE, I WAS ON A TAPER, BUT STILL HAD DAILY

DOSES.  I HAVE BEEN PUT BACK ON PREDNISONE IN 5TH MONTH AND AM PRESENTLY IN 7TH MONTH.  I NOTED BEFORE (A FEW WEEKS AGO I THINK) THAT IT WOULD NOT HAVE BEEN MY CHOICE TO HAVE ANY MEDICATIONS AT THE TIME OF CONCEPTION, PREGNANCY, OR DELIVERY, BUT MY RHEUMATOLOGIST IS ACTUALLY ENCOURAGING ME TO STAY ON LOW DOSE (MAYBE 5 MG) OF PREDNISONE THROUGH DELIVERY.  I’LL SPEAK WITH MY OB/GYN ON THURSDAY ABOUT IT.

 

I AGREE WITH THE GENERAL COMMENTS THAT CHILDBEARING IS A PERSONAL CHOICE.  I AM VERY MUCH SUPPORTIVE OF NURSING THROUGH THE FIRST YEAR.  I AM ALSO VERY MUCH IN SUPPORT OF CLOTH DIAPERS (AS OPPOSED TO THE CHEMICALS USED IN DISPOSABLES).  BEING THAT I HAVE GONE BACK TO WORK IN THE OFFICE, AND AM NO LONGER WORKING FROM HOME, THIS LITTLE ONE, DUE IN DECEMBER, WILL HAVE THE BENEFIT OF BREAST MILK, BUT NOT CLOTH DIAPERS.  I HAVE A SITTER WHO WILL WORK WITH ME ON THE MILK I SUPPLY TO HER.  I’LL BE HONEST, SHE WOULDN’T BE MY SITTER WITHOUT THAT UNDERSTANDING – IT’S THAT IMPORTANT TO ME FOR THE NATURAL IMMUNOLOGY BENEFITS TO BABY.

 

I AM CERTAINLY NOT TRYING TO STEER ANYONE’S DECISIONS, BUT BELIEVE THAT LIFE IS WORTH LIVING.  I SAW A BUMPER STICKER RECENTLY THAT SAID “LIFE IS A GIFT, NOT A CHOICE” AND IT MADE A BIG IMPACT ON ME.  LIFE IS PRECIOUS, AND EACH ONE OF US IS, EVEN WITH OUR FLAWS AND FAULTS.

 

I AM SO VERY GRATEFUL FOR HAVING ALL OF YOU TO SHARE WITH (AND MORE SO TO LEARN FROM!!!) AND FEEL BENEFITED FROM HAVING FOUND THIS COMMUNITY!!!

AS FAR AS FAMILIAL FACTORS, MY HUBBY HAD HIS APPENDIX REMOVED AT CHRISTMAS OF 1996 AND HAD BEEN DIAGNOSED AT THAT TIME WITH CROHN’S DISEASE – BUT HAS NEVER FELT ANY EFFECTS OF IT.  THEY HAVE NEVER FOUND ANY TRACERS IN HIM, BUT HAVE INSISTED THAT IT COULD NOT HAVE BEEN REMOVED WITH THE APPENDECTOMY.  HMM… THEN THERE’S ME, WITH UC, WHICH AT TIMES IS A FLARING, RAVING CASE OF UC.  NEITHER MY HUBBY NOR I HAVE ANY FAMILY BACKGROUND OR KNOWN FAMILY MEMBERS WITH ANY TYPE OF IBS OR IBD.  IT JUST DOESN’T SEEM TO MAKE SENSE.  WE CANNOT HAVE GIVEN IT TO EACH OTHER, BUT WE APPARENTLY DID NOT GET IT FROM OUR FAMILIES.  DID IT JUST SPONTANEOUSLY ARRIVE IN OUR BODIES?  MAKES ME WONDER!

 

THANK YOU ALL AGAIN FOR BEING SO HONEST AND OPEN WITH YOUR STORIES.  PLEASE, DO “KEEP THOSE CARDS AND LETTERS COMIN’!!!”

Carolyn Zara, CRNP-CNS, IBCLC  is completing a website called Motheringtouch.com that will have general information about breastfeeding. Previously she was earning her living as an advanced practice nurse/nurse-physician.   She was functioning as a maternal child health clinical nurse specialist/nurse practitioner and clinical lactation consultant assisting mothers with breastfeeding problems during a nurse-physician office or home visit. Debora

Has anyone been pregnant with Crohn's here or while on the SCD? What should I know? Success stories?

Roseann,

I am presently expecting and have been on SCD for about a month.  (I really should have written down my start date, but for the first week or two, the more I read in the book, the more I realized I was not on track yet, so I had kind of a rough start.)

 

Since having been diagnosed w UC last Aug (a year ago) I have had erythema nodosum (clever title for "red bumps") which felt like severe bruising on both knees (very painful to play on the floor with my 2 year old) and also have been diagnosed with ankylosing spondylosis (arthritis caused by gut problems) which was also very painful.  I'm 34 years old, and relatively healthy with the exception of UC and its complications.  I shouldn't have to go through this, though, and neither should you!

 

I am now on my 3rd batch dose of prednisone, though tapering.  I started the diet the same time as starting 3rd go around of prednisone.  All is well now, though still get my fair share of D, also no fun.

 

Anyway, I've brought the copy of the BTVC front cover, back cover, and the printout of the on-line list of allowable and disallowable foods to my practitioners at my follow ups: -- OB/GYN was supportive, and stated that he appreciated that there was a wide variety of fruits and vegs. -- GI specialist just rolled his eyes (which I expected him to do as he's done this whenever I ask him about holistic medicines rather than prescriptions -- and he has just offered me prednisone each of the three times that I tell him I can't take it any more) -- PCP (a D.O.) told me that I picked a rotten time to start a new diet - being that I was in my 5th month of pregnancy at the time.  When he actually read the list, though, he was very supportive of the variety of foods.  He felt that potatoes are valuable to nutrient consumption and he would prefer to see them on the legal list.  He is a big believer of the Atkins diet and commented that it's limited on that diet, too.  Again, he was happy to see the wide variety of fruits and vegs. -- Rheumatologist (another D.O.) - have only seen her once and have a follow up on 10/30, but expect her to be unknowledgeable, but supportive.

 

In addition, I am taking prenatal vitamins, and being that I'm worried that I'm supplying enough nutrient to my not-yet-born daughter, I'm taking them with breakfast AND dinner meals.  (Each of my practitioners has been fine with that, but if you chose to do so, please take your bottle of prenatals along with any and all other meds with you on your visits so your doctors can see the quantities and values of the prenatals/holistic meds/prescriptions.  I'd hate you to overdo one or more vitamins and have it backfire on you!!!  Nothing is more important to me right now than caring appropriately for my children, both the one I've met and the one I haven't met yet.)

 

By the way, I was able to successfully quit smoking when we knew we had conceived our first daughter.  I felt too guilty with smoking, because I knew I had a choice about it, but she didn't.  That may be a motivation for you to stay strict to the diet, if it's not good for you, it may not be good for your unborn child either, be that your favorite (illegal) snack food or a favorite (illegal) beverage...

 

Ironically my UC symptoms were COMPLETELY gone when I was pregnant with our first child two years ago.  I thought it was from the hormones in my system. The same UC illness has BOMBARDED me with symptoms with this pregnancy.

 

I don't really know if I've answered your question because I'm still on prednisone and will be until the GI specialist tapers me off completely -- which will probably be after my delivery date in December.  My point is that I've talked to my doctors about SCD, and I think you should too.  My OB/GYN noted that prednisone is acceptable in beginning of first trimester, to help sustain pregnancy.  My GI specialist noted that sometimes OB/GYNs use prednisone in the end of 3rd trimester to help complete lung development in the event of premature labor.  (Coming off of it is wicked for me and I hate that, even though I have a slow taper off of it.)

 

Hope this helps.  Keep your chin up!  (And remember doctors don't know everything, look at all the beneficial stories we hear from this terrific group, and the doctors still seem to not believe in SCD.  They can only treat with what they know, and as far as my GI specialist, he only knows drugs.  I don't agree with him, but I can understand where he's coming from and I still respect him.)

Stefene UC diagnosis 1 1/2 years ago (though suspect I've had it for 15 years+) SCD about a month - 2nd pregnancy (and loving it!)