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Ash83
Regular Member


Date Joined Nov 2007
Total Posts : 128
   Posted 11/12/2007 2:34 PM (GMT -6)   
.....

Post Edited (Ash83) : 1/21/2008 6:10:37 PM (GMT-7)


peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 11/12/2007 3:26 PM (GMT -6)   

I cannot offer any advice as I don't have children, but I do want to welcome you to the forum.  You have found a good place to talk with very caring, compassionate people IMO.  I wish you the best and I'm sure someone will be along soon to give you their experiences/advice.

 


Peggy
      
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 
 


justjenjen
Veteran Member


Date Joined Nov 2003
Total Posts : 518
   Posted 11/12/2007 3:51 PM (GMT -6)   
I have been pregnant with an ostomy (mine was a temp at the time though now is perm) and did just fine. The only risks I was made aware of was due to my crohn's disease not the ostomy itself. In fact my colon-rectal surgeon encouraged me to go out and enjoy life and have a baby if I wanted to. There were some challenges but nothing much. Mainly it had to do with an ever changing stoma which required me to change the type of bags I use as well as wear time. Also, when I got pretty big I couldn't see my stoma so I had to use a mirror to change my bag. The only "almost problem" was b/c I got a nasty cough and due to the pressure and constant hacking my stoma decided to come out for a bit. It looked pretty yucky b/c a good 4 inches or more was out. I made an appointment and the doc took a wait and see approach--sure enough once I was over the cough my stoma tucked itself back in where it belonged. I am so sorry to hear about the lose of your girls. I've too have miscarried (though much earlier in pregnancy) and understand what your going through. Good luck with whatever you decide.

justjenjen
Veteran Member


Date Joined Nov 2003
Total Posts : 518
   Posted 11/12/2007 5:02 PM (GMT -6)   
This paragraph is going to be choppy but hopefully I'll get everything answered. :) No, my surgeon did not keep close tabs with the ob but she was on call the day I delivered just in case anything should happen--it was a c-section. The c-section was crohn's related not ostomy. I did not have any problems with food. Output was the same. No problems hiding bad since maternity clothes are "fluffy" over that area. A co-worked did put her hand right on my bag though trying to feel the baby so I ended up telling her--why do people think it's okay to do that?!?! Ultrasounds were not a problem and they got all the necessary measurements needed as well as some cute pics. I did use a bag cover for the ultrasounds just for my own comfort. Everyone I encountered though it all was very professional and did not bat an eye over my little friend. I don't mind all the questions--ask away! :) Oh--and due to it being a c-section the day I delivered I was asked to put a new bag on sideways to make emptying easier as well as I think it made them just feel better since it would not hang down after and irritate my stitches or whatever....I don't see how it really made a difference but like I said it made them feel better. Even my ET nurse mentioned that she had never been to the ob/gyn floor to see a patient.

Amey
Veteran Member


Date Joined Jul 2006
Total Posts : 942
   Posted 11/12/2007 6:39 PM (GMT -6)   
Ash,

I have never been pregnant with an ostomy; however, I have been pregnant. Have you talked to your OB about how long you should wait to have children after your ileostomy surgery? I was told I needed to wait at least a year and preferably 2 years (I am 3 months post surgery). I agree with your concerns regarding having another surgery and then attempting to have a baby. I have suffered from a severe motility disorder/chronic constipation my entire life and my health began to deteriorate dramatically when I was 20. My husband and I tried to have children very young before my health made a turn for the worse. Now, I have two wonderful children and that is as far as we could get. I am hoping this surgery will help me to one day be able to have another child. I could get a reversal in the future, but I am not going to attempt anything until I am out of my fertile years. Then, once I know that I can no longer have children, I may consider a reversal...but I honestly doubt that I would ever end up having a reversal (too many side effects).


I am glad that you are doing so well with your ostomy. I am very sorry for your loss with the twins. My most sincere sympathy to both you and your fiancé. I commend you for your strength and courage to even post a message about your experience. My eyes filled with tears just reading about it.
Amey
 
 
Ileostomy 8/2007
Revised Coletomy/ Reset Anastimosis 2006
Revised Colectomy/ Obstructions 2005
Sub-total Colectomy 2001
 
Prov. 16: 20 Whoso trusteth in the Lord, happy is he.
 
Zelnorm, Colace, Motilium, Citrate of Magnesium, Nexium, Amitiza, Potassium, Magnesium, Miralax, Milk of Magnesium, Corgard, Glycerin Suppositories, Sorbitol, Bentyl, Senokot


Amey
Veteran Member


Date Joined Jul 2006
Total Posts : 942
   Posted 11/12/2007 7:22 PM (GMT -6)   
Ash,

I do not want to use this forum to teach gospel principals; however, I really feel like I should share this information with you. I believe that we have souls inside our bodies and depending on if a person is good or not on Earth determines if their souls goes to Heaven or not. This is a pretty funamental perspective by most Christians. That being said, I do not believe that souls die and if they never die, then they have to live somewhere before the soul enters a baby's body. I believe that souls are created by God and that he sends his souls here to Earth to be tested and tried and our job as his spirit children is to be obedient to God. - Again, most Christians believe this as well. I also believe that some souls were so righteous and so obedient in Heaven that they did not need to come to Earth to prove themselves to God. The only reason they needed to come to Earth was to get a body. (All souls in Heaven need to come to Earth to get a body). I truly believe that you were chosen by God to give your two obedient daughters exactly what they needed - a body. They did not need to be tested on Earth...they were already righteous daughters of God. Now, they are back with their Father in Heaven where they belong.

My brother died at birth and my mother always blamed herself. It was not until my mother learned this principal that she no longer felt guilty. Instead, she felt honored that God would entrust her to be his servant and give my brother what he needed from this world - a body. That was all he needed and she helped him recieve it.

I hope this brings you some peace. You were truly chosen and you did exactly what God needed you to do. Do not feel guilty. You are also a daughter of God and he is watching over you.
Amey
 
 
Ileostomy 8/2007
Revised Coletomy/ Reset Anastimosis 2006
Revised Colectomy/ Obstructions 2005
Sub-total Colectomy 2001
 
Prov. 16: 20 Whoso trusteth in the Lord, happy is he.
 
Zelnorm, Colace, Motilium, Citrate of Magnesium, Nexium, Amitiza, Potassium, Magnesium, Miralax, Milk of Magnesium, Corgard, Glycerin Suppositories, Sorbitol, Bentyl, Senokot


justjenjen
Veteran Member


Date Joined Nov 2003
Total Posts : 518
   Posted 11/12/2007 8:38 PM (GMT -6)   
I was not even a year post op before becoming pregnant--maybe 9 months or so after my surgery (I think). The stoma got bigger not hideously so, but I still needed to make adjustments. It changed shape a bit, too. I did carry full term without any complications. Due to the high incidence of miscarriage and stillborn with crohn's I got more ultrasounds and at 28 weeks had non-stress done every week. Also, b/c I was high risk I had to call the dr. every time something did or did not happen. It was always nothing but they did not want to take any chances (me neither!). Truly, I had a very easy pregnancy and loved every minute of it. As for the fertility, I was not affected at all either by my stoma or crohn's. In fact I could stand to be a little less fertile!! LOL Listen to your doc's advice but also listen to your own body and heart. And as hard as it seems, try let go of any negative feelings you have about your miscarriage--Amey is right. Your girls served their purpose in this life and are now in a better place.

lp
Regular Member


Date Joined Nov 2007
Total Posts : 29
   Posted 11/12/2007 9:14 PM (GMT -6)   
I had my first child 16 years after my ostomy surgery. He is now 22. His sister is 20. The biggest discomfort was from the babies putting pressure on the adhesions from the colectomy. Both kids were c-sections but we don't know if that was due to the ileostomy. I worked during pregnancy until about the last month - I stopped because I couldn't reach the gas pedal to drive. How difficult it is to change your bag maybe be dependent on how low your stoma is positioned. I just adjusted my aim, which seemed sufficient until the very end, when I needed a mirror. I wasn't considered high risk. I returned to work and nursed each one about 12 months. You need to be very diligent about good nutrition and staying hydrated.

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 11/13/2007 1:34 PM (GMT -6)   
i have to tell you first how very sorry i am for you losing your babies, that is so awful. And i also have to tell you to please not blame yourself.

ANyway, i have always read that people with ostomies can have babies, and with pretty much no problem, like they said the stoma changes. I would think that a c-section would be necessary, just because usually after you have stomach surgery they suggest a c-section. Or at least it used to be that way.
Anyway, i think you should get some other opinions from diff drs on the subject a high risk OB woudl be a good idea, tehy are very helpful, i still had UC when i had my son, and i was followed by a high risk OB. And i really wish i had had hte surgery first, then i wouldn't have had to worry about what hte meds i was on would do to my baby.
Anyway, i hope all goes well for you, and i will keep you in my prayers
 
 
snaej ni tfel eht no cip


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 11/14/2007 9:59 PM (GMT -6)   
no i still had UC when i had him, luckily though the pregnancy put me into complete remission! which was part of what led to my decision to have the surgery I got a taste of "the good life" back.
Anywya, i understand about not wantign to have another vaginal birth, not fun is it, although that epidural sure is a good friend, lol.
I think it is very important that you find a good high risk dr. I don't know where you live, but i was lucky to get wiht a group that does alot of preemies and such, which was important in my case, and one of my drs had been doing it for about 35 years, which made me feel pretty good!
what i did was see a regular OB group, one that could deliver at a hosptial with a level 2 or higher nursery, which i was also lucky that my husband happeend to work there at the time! anyway those drs had experince with high risk babies, but were not specialists, then i saw the specialist every month at first, then, after the baby got where it could survive on it's own, i think about 33 weeks, i quit going to the specialist, which was actually funny because at 34 weeks i went into early labor! but it was stopped, after that my regular OB kept in closer touch with my High risk OB, then when i delivered my High Risk OB was called and told. Be sure that the hospital you deliver at has a neo-natal RN or dr that will be there when you deliver. Just incase, although i don't see why having a ostomy would make your baby a high risk, just in case though.
I had something else, but i have forgotten it!
 
 
snaej ni tfel eht no cip


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 11/14/2007 10:13 PM (GMT -6)   
i was, but after he was born i got my UC back in full force
those reasons for it being high risk make sense, i never thought about that! It is annoying to have to see a dr that often that's the way i was for a while, but if it's good for the baby, then that's what you have to do. Mine was made worse by the fact that abotu two months into my pregnancy i started randomly getting very dizzy and passing out! so i couldn't drive, so someone had to haul me around, lol.
the risks are to you though i gather though, what would that do to the baby?
 
 
snaej ni tfel eht no cip


dragonfly137927
Veteran Member


Date Joined Sep 2006
Total Posts : 2527
   Posted 11/16/2007 5:44 PM (GMT -6)   
I am looking to start a family too. I ended up having my temp ostomy reversed and one month later I was in severe pain wich the Dr's attributed to healing since there was no Crohn's evident in either bowel. Well the end of september came and I now am nursing an enterocutaneous fistula. Had I not had this complication I would be setting up for a colonoscopy for december/January to see if my crohn's was inactive giving my husband and I the all clear to start a family...my resection was Feb 12, 2007 the partial colectomy/temp ileostomy was Feb 19, 2007 and my reversal was June 20 2007.
Dx with Crohn's 1987, symptoms as early as 1984.
Temp iliostomy February 2007, reversed June 2007, Ovarian cysts, migraines, allergies (incl food allergies) , oral allergy syndrome (diff than true food allergies), Asthma, Gall Bladder removed 1999, Inguenal hernia 1987
 
 
 


Amey
Veteran Member


Date Joined Jul 2006
Total Posts : 942
   Posted 11/24/2007 8:59 PM (GMT -6)   
Good Luck Ash. Let us know how it goes!

Amey
Amey
 
 
Ileostomy 8/2007
Revised Coletomy/ Reset Anastimosis 2006
Revised Colectomy/ Obstructions 2005
Sub-total Colectomy 2001
 
Prov. 16: 20 Whoso trusteth in the Lord, happy is he.
 
Zelnorm, Colace, Motilium, Citrate of Magnesium, Nexium, Amitiza, Potassium, Magnesium, Miralax, Milk of Magnesium, Corgard, Glycerin Suppositories, Sorbitol, Bentyl, Senokot


Gillcom
Regular Member


Date Joined Nov 2007
Total Posts : 272
   Posted 11/26/2007 10:23 AM (GMT -6)   
Hi Ash,
I was curious as to how you got on with your OB consultation? I hope you received some positive news!!
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