Community Forum

Have a question, or want to share your own tips and experiences? Join the discussion in the community forum. You must be registered to participate. Our forums are moderated by Crohn's & Colitis Foundation staff to facilitate a safe environment.

Please someone, give me you thoughts


Fri, November 07, 2008 1:00 AM

I would really love some replies.  It seems I get lookers but no replies when I post.  I know my emotions get the best of me, but I don't know what else to do.  I have been feeling so guilty for too long and don't know how to make it go away.  Over four years ago I had a baby and was taking asacol for my UC.  I had wanted to breastfeed, but because we knew for a fact that the meds were present in the breast milk, my hubby and I decided I wouldn't do it.  My doctors felt it would be safe, but since things keep changing in the medical community about drugs and other things that were once thought safe and later pulled off the market, we didn't feel quite safe with their assumption.  I got some information from the lactation specialist that stated the drug was listed as a level 3 out of 5.  It said to only do if the benefits outweighed the risks. 

Now five years later I often worry that I should have trusted the doctors and nursed him.  I'm so afraid he will get some disease the nursing could have prevented.  I'm afraid he will blame me for not protecting him and doing what I could to help him when he was a baby.  Would any of you blame your parents for not protecting you or nursing you so you wouldn't have gotten this disease.  I just feel so terrible all the time. 

Yes, I am going to a counselor, but just when I think I'm making headway, something triggers these feelings.  Also, I don't know if I feel my counselor can relate since he doesn't have kids or have some disease that he has to deal with.  Please can some of you reply.  Maybe someone can say something to make me get over this.

FPO samon42
Joined Nov 10, 2008

Mon, December 01, 2008 2:28 PM

 Reply posted for samon42.

I work in a pediatricians office and I dont think you should feel bad at all.  Look at it this way if you had stopped taking your medication so that you could breast feed you may have gotten sick and had to let someone else take care of  your child.  You could have missed out on so many things being sick but you kept yourself healthy so you could love and care for your child.  Second working where I work I see many mothers who just dont want to put up with the hassle of breast feeding. It is a lot of work and they just dont want to do it.  These mother's are often all too quick to pass off the child with a bottle in its mouth to the nurse who they have just met for the first time which frightens me way more than a woman who cared and loved her child enough to keep herself healthy so she could take care of them.  I am 27 I couldnt tell you if my Mom breast fed me or not and really it doesnt matter either way.  She is and always will be my Mom, it is not her fault I am sick.  She did nothing wrong, I did nothing wrong and YOU did nothing wrong!!!

FPO sara1124
Joined Nov 30, 2008

Tue, November 18, 2008 12:05 PM

 Reply posted for samon42.

I was sick through my whole pregnancy, but I just thought it was pregnancy yuckys.  After I had my daughter, the sympoms didn't go away and I still as so sleepy and feeling yucky and in the bathroom all the time....after 3 months, I started having testing done.  I ended up in the hospital with a hemmroidectomy and seriously dehydrated before they could figure out what was wrong with me.  I was breastfeeding this whole time up until the hospitalization.  My daughter was born tiny (6lbs) and was still under 10lbs when I was hospitalized in April and diagnosed with uc.  She loved the switch to formula because she was getting more nutrients that she needed because my body wasn't getting them to her.  I still feel guilty that I was starving the poor girl for the first 3 months, but she loves the formula and gained 5 lbs in the 3 weeks I was in the hospital.  I have to just get over it and know that she is healthy now.

FPO tfreedman
Joined Nov 12, 2008

Wed, November 12, 2008 1:00 AM

 Reply posted for samon42.

Take a deep breath...When I had my daughter 12 yrs ago, I was just starting with Proctitis that morphed into UC when she was 1yr old. I was not on meds when she was born, but she was born a month early and very small and delivered by c-section. I just could not do it! as much as the nurses tried to help me, I just could not and finally fed her formula. Pls stop beating yourself up! She is healthy, was never sick much (you know how they say that breastfed babies do not get sick like bottlefed babies) she shows no signs of inheriting UC and if she does, I will cross that bridge when I get there. Enjoy your child, enjoy your life, everyday is a gift and I did not mention that I suffered from PPD after her birth and was medicated for several yrs. I am off antideppresents currently and just try to live life to the fullest with UC. BEST OF LUCK!

FPO lfs603
Joined Aug 4, 2008

Tue, November 11, 2008 11:34 AM

 Reply posted for samon42.

I really appreciate all your replies.  It's just so hard for me to quit blaming myself for not providing for my child.  At the time I thought I was doing the right thing, but I hear of so many others that take asacol that did nurse and it just kills me to know that I should have been able to do it too.  I really wanted to be able to do that for my child. 

As one poster mentioned, there are many benefits for when the child is just and infant, but research has shown that some of those benefits are life long.  They did list one of the benefits as being a possible protection from certain diseases and IBD was one of those listed.  That's why it bothers me so much.  I feel like I should have protected him better since he already has bad genes from me. 

I did nurse my first child because I had him before I was diagnosed and therefore not on any meds.  I don't feel that bonding was a problem for me with my second child that I bottlefed, so that really isn't the issue for me.  It's just knowing that I really would have been able to nurse him and I didn't do it.  I was afraid the meds would harm him and I now believe I was wrong.  If I could turn the clock back and do it over again, I would.  I only want the best for him and I believe I have failed him.

FPO samon42
Joined Nov 10, 2008

Mon, November 10, 2008 1:00 AM

 Reply posted for BigSister08.

i hear youre pain, 


but be glad that you have a child, and a family, i have chrones and my dream is to start a family one day, but im too sick too work, and i am currently fighting for disabilty, i just want to get better so that i can work and start a family, but with no meds and no money, that cant happen so be thankfull..
i wish you the best.

-roberto

FPO bar0829
Joined Nov 10, 2008

Mon, November 10, 2008 1:00 AM

 Reply posted for samon42.

Dear Concerned Mom~  I suggest you develop a better understanding about nursing.  It is, indeed, of great benefit to mother and child...but for reasons other than what you are anguishing over.  First of all, the antibodies transmitted to the child in the milk are relatively short-live and are not life-long and would apply in protecting the baby (only for the duration of the breatfeeding months) from, let's say, measles, mumps, etc. -- not for a lifetime -- only while the baby was receiving the milk (assuming the mother had these antibodies in her own system, of course).  Are there antibodies for IBD, or Chrones, or Colitis???  To the best of my knowledge, no.  I've had 2 children, one nursed and the other on formula.  Thank G-d, both are fine, close to 40 yrs. of age, and your mental sense of misplaced "guilt" is inappropriate and, if you have your toddler's best interests at heart...make sure he has a mother both mentally and physically capable of caring for him.  Take care of YOUR health so he has a happy mommy.  Happy mommies have happy kids...and happy is a good start to healthy! 

Whether your counselor has kids or not, I think he can clearly detect that your "issue" is truly not one founded on factual data or reality.  You should read up to learn that breastfeeding cannot prevent later-in-life "diseases." 

P.S.  One of the better benefits (and often least known) of nursing is the tactile stimulation the baby receives from the physical skin-to-skin contact of his/her cheek -- it causes enhanced development of the jaw and nervous system.

If you are really looking for something to worry about and anguish over, I can think of many others that are real.  Be well.

FPO nikki
Joined Nov 10, 2008

Sun, November 09, 2008 1:00 AM

 Reply posted for samon42.

I can just feel your emotions in your post.  You had a baby over 4 years ago and you feel you wished you had nursed him and possibly prevented him from getting any disease.  You were on Asacol at the time and were worried of the possible side effects of the drug in your breast milk.  I was bottle fed.  I didn't get UC (you never I know, I still can), my brother was bottle fed and got UC.  I nursed both my children.  My son does not have IBD (like I said, you never know what the future holds) but my daughter was breast fed and has UC.  I think there are so many gambles in life.  If you breast fed your son, you may have been worried right now that you may have done the wrong thing by nursing him while on Asacol.  I think what you need to do now is focus on him right now.  The years fly by so quickly and I wish you wouldn't focus your time worrying about something that was in the past.  I'm wondering if the real issue is that you don't want your son to have UC like you.  Maybe that is the underlying issue.  Every mom (and dad) wants their child to be healthy.  I'm sure your mom felt the same way.  I think in life there are always risks in the decisions we make.  Sometimes it's out of our hands and people just have a genetic dispostion to certain diseases. We just do the best we can.  LIfe is a mystery and we all don't know what's ahead or know all the answers.  It's how we deal with situations that is sometimes hard but we do the best we can and you will too.  You are dealing with this by seeing a couselor and I'm sure you will work all of this out.  It's great having this discussion board knowing that you are not alone in this grand scheme called life.  I wish you the best and please keep us posted on how you are doing.  : )

FPO ez
Joined Nov 9, 2008

Sun, November 09, 2008 1:00 AM

 Reply posted for BigSister08.

No need to beat yourself up over not breastfeeding.  I continued to breastfeed when I got first got sick with UC and probably should have stopped sooner than I did.  I think for a couple of weeks my baby was getting very 'low grade' milk because my nutrition level was so poor - I was losing weight at a very rapid rate and barely hydrated.  I was trying to do the best thing for her by breastfeeding, but may have done a bit a harm to both of us - she was lagging a bit developmentally and I was giving up what little nutrients I had.  Once we switched to formula, she got much stronger and even started rolling over.

I still miss breastfeeding very much - its been about 6 weeks, but stopping is what needed to be done.  If I hadn't stopped when I did, the doctors would have made me when I was hospitalized a week later.  Now that I'm on 6-MP, breastfeeding is NOT an option.

FPO txfoodie
Joined Oct 19, 2008

Sun, November 09, 2008 1:00 AM

 Reply posted for BigSister08.

Crohns does not run in my family and I was diagnosed in 2001.

I thought that I would have lung cancer out of the womb as both my parents were big smokers.

I don't blame them at all for my disease as no one knows if there heriditery values.

Live your life to it's fullest and live it one day at time and enjoy your child because before you know it he/she will  be grown up and have a family of there own.

No worries!!

No Regrets!!

FPO wolfie
Joined Sep 21, 2008

Sat, November 08, 2008 11:45 PM

 Reply posted for samon42.

Life is hard enough without beating yourself up. Wondering about the consequences of not breastfeeding counts as beating yourself up. You did what you felt right as a mother. Give yourself credit for that. Too many mothers would capitulate and do what the doc says, to their later regret.


Pat yourself on the back. Don't give yourself a black eye anymore.

FPO jeffdc
Joined Aug 25, 2008

Sat, November 08, 2008 1:00 AM

 Reply posted for samon42.

i replied to you once before, but just so you see this.. don't be so *** yourself.  i have an 8 year old daughter with crohn's, we do not have any family history of the disease and i nursed for a very long time.  no one knows why someone gets these diseases and i believe there is nothing that you can do or not do to prevent it. 

FPO concerned mom
Joined Jun 19, 2008

Fri, November 07, 2008 1:00 AM

 Reply posted for Trissy.

Breastfeeding has gone through interesting cultural shifts.  When formula first came out, only "poor" people nursed.  In my baby book, it actually has an entry for "brand of formula used", because it was a status symbol to be able to give your baby formula.  Since then, it's flip-flopped to the idea that only "good" moms nurse, and if you use formula then you are somehow less of a caring mother if you choose not to nurse.

You can't look at children in kindergarten and pick out which ones were breastfed and which ones weren't.  Keep this in mind, and please don't let yourself feel guilty about not nursing.  There are many more things you do every day to show your child(ren) you care.

Ask any teenager if they want to think about being breastfed by their mothers!  Most of them exclaim, ewwwwwwwww - gross, Mom!!




FPO nickrystal
Joined Nov 7, 2008

Fri, November 07, 2008 1:00 AM

 Reply posted for samon42.

When I was diagnosed 4 years ago I didnt even think about children.
Now that I am married and older it has crossed my mind now and then.
Last year my UC had spread and long story short had to quit my job and take care of myself leaving my husband the sole  income with my medical bills on top of that.
I went and talked with my general PA one day because I had general visit and I chatted with her regarding my concerns and child bearing and breast feeding, she had also just had a baby and she said to me.
" You can not worry about the future, you have to take it day by day and enjoy life" so what you dont breast feed ( she also bottle feeds) the child is going to grow up in a loving, caring and happy family and thats all that matters. As long as you eat healthy and carry that to the table with your children there is going to be no problems. You can not concern yourself over the small things everyone lives there life differently and you choose to play it safe and there is nothing wrong with that, personally I would have to. Its better to be safe than sorry is my motto.
Meet with your councelor and enjoy life.
-T

FPO trissy
Joined May 20, 2008

Fri, November 07, 2008 11:50 AM

 Reply posted for samon42.

You care and worry so much that you cannot relax. Would you have rather not brought a child into the world at all? There isnt valid proof that  Crohns or Colitis is hereditary. Chill out. Take a breather. Watch your child play and smile and laugh and embrace these moments. Through and through a parent does the best they can with what they have. The best you can do is raise your child in a loving environment and as they grow up they will feel confident about whatever life throws their way.

 

FPO bigsister08
Joined Nov 7, 2008

Related Topics

Feeling Alone with my UP ...
Author Image BeauutifulChaos
Joined Feb 17, 2022

I was diagnosed in October of 2020 with Ulcerative....

read more

Stunned by how much this ...
Author Image Alrightalright
Joined Sep 11, 2021



read more

Navigating Challenges and...
Author Image heniersometch
Joined May 9, 2024

Nursing forming affiliations wrap a wide pack of h....

read more