I'm a new member with my new diagnosis...it's Crohn's

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Chatgi8634
New Member


Date Joined Oct 2007
Total Posts : 4
   Posted 10/11/2007 7:03 AM (GMT -7)   
Hi all,
 
I am a 29 year old female, diagnosed in July of this year with Crohn's.  I was suffering since early March and decided to go to a GI becasue of all the symptoms.  Here I am all these months later treating what they have told me is Crohn's disease.  I am not happy and not really over it yet.  I'm lingering in denial a bit.
 
Well, I am on Prednisone, Remicade, Pentasa, and 6mp  (Doc is getting me from every angle now, since the Pentasa after trying to lower steroids wasn't doing the trick).  I'm functioning better but still on sick leave from work.
 
I am getting married in May 08 and would like to start a family within a year... I am not getting any real answers from my doc on how long I'll be on the 6mp, Remicade, Pentasa and how this all will prolong or prevent pregnancy?  To top it all off, I have endometriosis and have concerns about my ability to conceive as I get older.  I have heard the song and dance about pregnancy that it's "better to be in remission on the drugs then in full blown Crohn's with no drugs."
 
So any ideas on the Crohn's, drugs and pregancy?  What am I up agaisnt?
 
Thanks.

momoftwoangels
Regular Member


Date Joined Jul 2007
Total Posts : 222
   Posted 10/11/2007 7:50 AM (GMT -7)   
I just wanted to welcome you to HW, although I am sorry that you have to be here. I know that with Pentasa there isn't a problem with preg. I have seen on this board people who have taken pred during preg too. I believe that for most people Remicade is sort of a 'you take it until it doesn't work anymore', but I haven't gotten to the point where I need it yet so I don't know a whole lot.

I think that basically they can get you on drugs that will be ok to have a baby with. They do recommend that you be in remission since you will likely feel like you crap the whole time if you aren't (that's what they say anyway).

The hard part of this darn disease is that you can live your life, but sometimes not in the way you had planned. It is fine to try and get answers to your questions, but don't let it upset you either. Working on getting to a point that you are better, and the rest will fall in to place. I'm not trying to be bossy, I am at a simular place, we are trying to decide if we want another child (our third), it is a huge decision all by itself, but now I am faced with the fear that I won't have the energy to care for the baby, or that I might end up in the hospital again. Doc just put me on imuran and said no to babies on this drug, however other people have said that they have taken it during preg. Sorry for rambling, just wanted to let you know that there are others out there feeling frustrated and feeling the same way as you.....

Now that I am completely not making any sense (we will blame it on the pred) I will stop babbling. I hope that you find some answers and that they will calm your fears.
Living with Crohns for 1 year. I have a wonderful husband and two beautiful little girls.
 
One blessing that came with my Crohns: I thank God for each day that I can get out of bed and take care of my girls and my home.


rootsmith
Veteran Member


Date Joined Jan 2004
Total Posts : 598
   Posted 10/11/2007 8:06 AM (GMT -7)   
I am curious to know if anyone on this forum has been pregnant with CD. When you are pregnant you are immunosuppressed. I would think that would have a positive effect on any inflammatory condition and there would be improvement. Pregnancy was the only time in my life I never had a mouth ulcer for longer than a month or two.

I have heard that flares of these diseases occur after delivery though. having to deal with that on top of a new baby would be so difficult.
10 years, many tests, 3 gi doctors, Pentasa 1000mg 3x day
diovan, simvastatin and now lexapro


curley
Veteran Member


Date Joined Mar 2005
Total Posts : 4305
   Posted 10/11/2007 8:14 AM (GMT -7)   
Welcome,

I am sorry that you are having to deal with all of this but know you are not alone and we will help in any way we can.

It is hard for your GI to give you any kind of time fram because crohns is so unpredictable and it all depends on the person because we all react differently to meds.When most are diagnosed with crohns prednisone is one of the first meds that they use because it works quicker to get things undercontrol.I am sorry that you are not getting the answers that you want.

I wish I could help you and give you answers as to the endometriosis as I have never had this problem but there are a few on here that can help you with this.I hope that you continue to post here and know you are welcome any time.
Curley
.........
 


mama2jmt
Regular Member


Date Joined Mar 2007
Total Posts : 301
   Posted 10/11/2007 8:19 AM (GMT -7)   
Welcome Chatgi,it's good to meet you.Sorry to hear of your recent dx.I hope that you start to feel better soon,take care.
~Jennifer~
Official Crohns DX-march 2004.Pentasa 4000mg,B12,Probiotics
         1 resection
Cardiomyopathy DX-may 2004.Coreg,Altace,Digitek,Lasix,Potassium,very low-sodium diet
          


Matthew
Veteran Member


Date Joined Oct 2004
Total Posts : 3932
   Posted 10/11/2007 8:29 AM (GMT -7)   
I don't know about the other meds, but some Gastros believe you need to stay on the Pentassa ( or other 5ASA drugs) for life. If you get a remission you should stop the other drugs.
Oh & Welcome to HealinWell!

Matthew

rootsmith
Veteran Member


Date Joined Jan 2004
Total Posts : 598
   Posted 10/11/2007 9:35 AM (GMT -7)   
That is what my gi office said as well about drugs like pentasa- if you are doing well, no reason to go off it.
10 years, many tests, 3 gi doctors, Pentasa 1000mg 3x day
diovan, simvastatin and now lexapro


Mormor Vicky
Veteran Member


Date Joined Mar 2007
Total Posts : 684
   Posted 10/11/2007 9:48 AM (GMT -7)   
rootsmith said...
I am curious to know if anyone on this forum has been pregnant with CD. When you are pregnant you are immunosuppressed. I would think that would have a positive effect on any inflammatory condition and there would be improvement. Pregnancy was the only time in my life I never had a mouth ulcer for longer than a month or two.

I have heard that flares of these diseases occur after delivery though. having to deal with that on top of a new baby would be so difficult.

Hi Rootsmith,  I've never been pregnant with Crohn's but my daughter has three children.  She was dx'd when she was 12.  She basically is in denial about the whole thing and hasn't been on meds since she turned 18 and told me she could handle her own health now that she was an adult.  Anyway, all her pregnancies were pretty uneventful except the 2nd one which was pretty hard on her.  She was in remission when she got pregnant with the first one, stayed in remission and as soon as she gave birth she flared.  Lost all her prenancy weight and another 20lbs within 2 months.  She got pregnant again 20 months later, went into remission and is still there 4½ years later.  The newest baby is 3 months old and she is feeling great Crohn's-wise.  Exhausted from having to raise 3 kids 6 years and under.  My thoughts are that the healthier your are at conception the easier the birth is.  That once your baby is born, it's a crap-shot if you flare.
Vicky / 47 years old
DX'd with Crohn's during a resection August 2006
DX'd with Steriod induced Diabetes November 2006
Considered in Clinical remission but have minor signs of disease activity
 
Daughter (26) also has Crohn's since she was 12.
 
Currently on 4000mg of Pentasa only for Crohn's
No longer able to take 6-MP because of Bone-Marrow Suppression
Cymbalta, Metformin, Lipitor


Concerned mom!
New Member


Date Joined Jul 2007
Total Posts : 19
   Posted 10/11/2007 10:27 AM (GMT -7)   
Welcome to HW
I hope & pray that you will find some answers...
Take one day at a time and read and learn about
CD and try not to stress.....

God Bless
My daughter was just diagnosed w/CD on 7/12.
She is currently on predisone which Dr. is weaning
her off. Pentasa and Nexium.


Chatgi8634
New Member


Date Joined Oct 2007
Total Posts : 4
   Posted 10/11/2007 12:47 PM (GMT -7)   
Thank you all for your responses and support.  It is great to be connected to people who are going through or have been through what I am facing now. 
 
In any event, the treatment is getting better with the Remicade (for anyone who is contemplating that as an option) and the 6mp in combination with the Remicade is fine (no major side effects).  The prednisone gives me acne and puffiness althouh I have only put on 3 of the 10 pounds I have lost since diagnosis. 
 
Bottom line...I have always hated the idea of taking meds and now it seem I have no choice.  It is a hard thing to get used to and the conflicting medical/pregnancy advice on all this is frustratiing (I'm sure all women with CD face the same frustration, I am not alone). 
 
Thanks again. 
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