Pregnancy with ileostomy

I'm hoping someone can help me... I've had Crohn's for many years and had an ileostomy done more than 10 years ago. I've recently had a complete proctocolectomy and my husband and I are wanting to start a family. Anyone out there been pregnant? I've heard that fertility decreases due to the Crohn's and surgery? What can I expect during pregnancy? Will I be able to care for my stoma myself? Is there any special needs for extra nutrients/diet during pregnancy?

Hi Pennyann,
I have had several pregnant patients who have ileostomies. As far as the stoma goes, they usually find they have to cut their wafer or appliance to have a larger opening as the belly gets larger, the stoma stretches.

With having Crohn's, I would check with your gastroenterologist and gynecologist prior to getting pregnant if possible. It would be good to know if your small intestine is involved, if you are on any medications, if you have scarring or other strictures or any other issues so you could make an informed decision, or plan ahead if potential complications during pregnancy.

I have had a pregnant patient with Crohn's only once and she did fine, the rest had their colons removed with ulcerative colitis and also did fine; one did get a food obstruction after craving spinach and eating 2 frozen packages of it!!! I would advise seeing your physician first though.

Good luck!

Thanks for the reply! Whoa!! As per my last scope, I have no disease in my small intestine. I am not and have not been on medications for over 12 years. I am currently in remission and feel great.

I've already made an appointment with my family doctor and he can refer me to a specialist if needed. It's been over a year since I've seen a specialist or surgeon, so I will require a referral from my family doctor if he feels the need for me to see one. I am just looking for some stories from fellow ostomates to share their experiences during pregnancy with an ileostomy.

Pennyann
I thought about your question after answering this morning a bit hastily. I apologize for that.

Yes, you should be able to take care of your stoma yourself.

Yes, I think especially with Crohn's (often output is more watery and rapid) there will potentially be more nutrient and fluid loss considerations which could impact you and the fetus. I don't know about fertility decreasing or if there is a higher risk of premature births, complications, etc. Much as my patient did well, don't know if that is the norm.

So...I think it is a wise idea to check with both GI and GYN doctors to get the whole picture and know what potential issues there may be before getting pregnant. It will be different for each person with an ostomy depending on their health picture and what course their personal disease takes. I would be less concerned about the stoma than how pregnancy affects you and the baby.

I'd be interested in hearing from others too, and if you see your doctors what they have to say.

Wow, your reply came up at the same time as mine!

Great news from your family doctor and also that remission for so long, no disease... fantastic!

I'd still see a specialist and get their take. No harm in being prepared... though I'd have to say probably you may be their first pregnant patient with a stoma! It may be more like you educating them... that's how I learn half the time... from the patients and their experiences as much as the books!

Good luck to you!

That is great news, Pennyann!
I got pregnant after I had an ileo-anal pull-through in 1986. I had ulcerative colitis, not Crohn's. The pregnancy went very well. I delivered a full-term baby girl naturally, with no painkillers until after the birth. Whew, after 19 hours of labor, go figure. I would make sure about all the nutrients the baby will demand from you during your pregnancy. My daughter started having problems with her lower back about 6 years ago, and the x-rays showed a weakened area of her lower spine. One chiropractor said she had a mild form of spina bifida due to a lack of folic acid while I was pregnant with her. Fortunately, another chiropractor did follow-up x-rays about 7 months ago and said it was not spina bifida, thank God!
My daughter did not have any birth defects and was absolutely beautiful, with a thick head of black hair and olive skin. She didn't look like me at all, and people were wondering about that, LOL. I took real good care of myself, took prenatal vitamins, but apparently, I needed extra folic acid. My daughter is a blessing, and I could not imagine life without her. She is now 22! Just pay extra attention to yourself during your pregnancy. If you get pains that are not part of the plan, call your doctor!

Thanks for your reply!! I have started taking folic acid and have really been watching what I've been eating, trying to ensure that I'm getting my daily intake of nutrients. I see my Dr. in 3 weeks, so I'm hoping for an "all clear"!! Fingers crossed!!

Good going Pennyann!!
The sooner the better. Fingers crossed here and cheering you on! Wow, we could have our first forum baby soon!!!
Blessings to you and hubby
Fiesty

Hi there, Penny.

I've been an ileostomate now for almost 23 years, and I also became pregnant after having my initial surgery.

My story is a bit different, and not everyone has probably gone through what happened to me, but in the end, I did deliver a healthy, beautiful baby boy!

Due to having 4 prior surgeries, I had a lot of scar tissue, and I had to use in vitro fertilization to conceive. That worked great, and everything was going well until my growing son decided he didn't have enough room and blocked a section of my small intestine.....so I ended up having a one-foot loop of small intestine that just happened to also be behind my uterus removed! All my surgeon said to me at the time was 'So you had to complicate matters by being pregnant?' Mind you, I had the same doctor perform all 5 of my surgeries, so he and I had a great relationship!

And if you didn't think that was exciting enough, because the docs couldn't see all of my fluid around my son, I was put on modified bed rest. That was horrible, of course, since I wasn't sick but just pregnant! Then when I was like 36 weeks pregnant, my mom passed away, and I traveled to Florida but under strict doctors' orders.....

Even with all that happened again, I did deliver a healthy baby boy.....naturally........I was minutes away from having a C-section because he was having a hard time getting through or around my scar tissue, but I think hearing the doc say C-section, my son said no way and out he popped not long after that!

Congratulations and good luck to you, and keep us all updated on how things are going!!

I just wanted to let you guys know that I got the "all clear" from my doctor today. No concerns, no worries, no need to refer to a specialist! YEAH!!! He was quite excited to hear that we're wanting to try!! So fingers crossed.....

Well, it's been well over a year and a half and I finally got a BFP!! I am currently 12 weeks pregnant. So far, no concerns or issues. I had an ultrasound at 6 weeks since my doctor was concerned that I was at high risk of having a tubal/ectopic pregnancy. Everything looked good! Is there anyone out there that has any tips or suggestions for me? I.e. - underwear suggestions? My current ones don't fit well anymore. Do the maternity underwear work well? Is there any concerns regarding what I can or can't wear during my pregnancy? Any thoughts are welcomed!!

Goodness - no idea about maternity wear for ostomates, but just to say congratulations and to wish
you and yours a healthy and happy New Year!

Rach xxx

Hi Pennyann,

Have just found out that I am pregnant too, very early stages, just a month gone. Did anyone give you any advice regarding nutrition for the baby? I've increased my folic acid to 5mg and am going to start on Pregcare for extra vitamins and minerals - I don't know if the baby is going to lose out on things because of the absorption problems that I have as a result of my ileostomy. Would be happy to hear anyone's advice!

Hope you are feeling well

xxx

Congratulations, Keekers!! I hope you are feeling well during the first trimester. I haven't been told that I need to do anything different as far as nutrition and vitamins. I currently take my daily prenatal vitamin. I make a point to eat as much fruit/veggies/dairy/whole grains as I can in a day. I am currently 23 weeks and as per my last ultrasound and prenatal visit, everything is going exactly as it needs to be. Baby is growing right on target. The baby takes what it needs from you. If prior to pregnancy you were able to absorb the appropriate amount of nutrients and were healthy, then there's no reason why the baby won't have the same nutrients. Good luck with your pregnancy. Keep us updated with your progress. Any tips/suggestions you discover or hear about, please pass them on. I don't know anyone else that is/has been pregnant with an ileostomy. I'm just starting to get to the point where I can't see my ostomy over my ever-growing belly. So any pointer on changing the "bag" would be great!!

Congrats on your exciting news. I had my surgery more than 45 years ago, and had my first and second babies 9-11 years after surgery. But that was back in the "dark ages". I was hesitant about getting pregnant, for myself, and for the health of my baby. But I had a great doctor, who assured me that we'd work together to make this happen. He'll take care of me and the baby.....and I just had to relax, and follow instructions. That's what I did. I ate well, got plenty of rest, took my prenatal vitamins. I also worked until my 9th month, traveling by train each day. I also took my driving test 9 months pregnant, and passed, and then drove into NYC for the first time, with my big belly. Maintenance became a little difficult at the end of my pregnancy, as I couldn't really see the stoma. I hadn't gained much weight, but my belly was blocking my view. My husband at the time fixed up a mirror to hang on the toilet seat back, so I could see my stoma "in reverse". It worked for those last few weeks. Clothes weren't a problem....although I did need new panties with a little more support. Today pregnant women wear their "baby bumps" proudly. Back in the day....we wore those unflattering tent-like tops that made us look like an army was hiding underneath. Delivery was difficult for me, as I had to be induced, and it didn't take. It seems that when the nerves to my bladder were damaged during surgery, I also ended up having painless labor. I did not feel a single pain, just some pressure, until I had to push. But everyone has a different experience. Just try to relax, and enjoy this very exciting time of your life. Best wishes.

Marsha

Hi Pennyann,

It's been a while, so you must be around the 30-week stage - how are you feeling?

I have made it to 14 weeks and am very relieved as I've had 2 miscarriages. It's hard to get excited in the early stages.

Things are going smoothly so far though. This is my 2nd child, so I am expanding quicker! I have got no advice really regarding anything so far. It seems nobody knows anything about an ileostomy or being pregnant with an ileostomy outside of the inner circle of experts! I am seeing my consultant on Weds, so hopefully, I will learn a few things there.

I am already finding it harder to hide the bag - it seems to protrude more with my tummy - is that something that you find, or are you too sensible to worry about the little things?!

I really hope you are doing well. Let me know how things are going - what you are finding difficult or awkward, etc. Are you very tired?

Take care,
Keekers

Congratulations to those who are pregnant! I have Crohn's disease. About 10 years after diagnosis, I still hadn't gotten pregnant. I had a colectomy/ileostomy and got pregnant 9 months later. I had a great pregnancy - bloody, painful, but full-term delivery of a healthy baby. 9 months later, I got pregnant again. It was the pregnancy from hell. It was an active baby that caused a lot of intestinal problems for me, but she was still delivered full-term and healthy. 1 1/2 years later, I got pregnant again. Everything was going well until my 6th month. I started throwing up a lot. I thought I had the flu. After a couple of days and no output into my bag, I started throwing up bile. In the emergency room, they said I was toxic with an obstructed bowel. Emergency surgery showed the obstruction was from scar tissue. I was awake through the surgery and they took my entire uterus with the baby inside... out of my body to fix the obstruction. They almost lost us both because I waited so long to go to the ER. I was in ICU 3 days after with high BP. I healed well and had a regular childbirth full-term, healthy baby. My son is now 13. He has an extremely high IQ and I wonder if it's not from all the IV fluid and special stuff they gave me... I am blessed.
My only real issues were that as my belly got bigger through pregnancies, my stoma and appliance seemed to stand out more. Maybe it was in my head. I wore regular maternity clothes and ate what I would usually eat. I suppose everyone is different. As long as your doctors are aware of your whole situation, it should be okay. Good luck!
Shari