Hey everyone,

I wanted to hear some feedback and personal experience from women who had/have ileostomies during their pregnancy. I've had mine for over a year now, and my husband and I want to try for a baby soon. I've heard conflicting information, and figured the best advice would come from those who have lived it.

The positive, negative, and everything in between.

Any and all information is greatly appreciated!

Hi Faith,

I have a perm ileo after failed j-pouch (had j-pouch 5 years with chronic pouchitis). I had a total of four abdominal surgeries the last of which was pouch removal.

When we had trouble getting pregnant after 18 months, we did IVF. Got pregnant first try with a single. Things were fine with my pregnancy until week 17 when I developed a major obstruction. I landed in the hospital for 3 weeks, couldn't eat for several weeks, was on a liquid diet for several weeks. The good news is taht since the obstruction was near my stoma opening, the surgeon was able to catheterize the stoma with a foley tube and hold the obstruction open preventing the need for surgery (once we got the right surgeon involved, things resolved quickly).

The obstruction cleared around week 24 and the rest of my pregnancy was uneventful and healthy. My son was born by scheduled c-section, which was also uneventful. He was 7lbs 10oz so my not eating didn't impact him at all. He's now almost 2 1/2 and I'm due to deliver a daughter on July 16th.

This pregnancy I've had no obstruction but have felt awful the whole time (this was also an IVF pregnancy). Awful taste in my mouth, bad indigestion, some vomitting, just overall feeling crummy. My OB says it is just normal being pregnant and I'm hoping he's right.

My stoma has been fine through both pregnancies. I've needed to change my appliance more frequently as my stomach stretches, but other than that no issues. Right after I delivered my son I had a major leak and couldn't figure out why. Then it dawned on me taht my belly got small very quickly and the appliance couldn't stick the same way.

All in all, aside from the obstruction, the issues have been minor. And we were quite lucky to avoid surgery for the obstruction.

I highly recommend using a high risk OB, esp if you can find one who has other j-pouch/ostomy patients - mine did and in fact he got me in touch with one of his ostomy patients before I even got pregnant which was really helpful.

He did not object to me trying a vaginal birth, however we both agreed that by doing a scheduled c-section he could take extra care with my GI situation, whereas if I tried a vaginal delivery and needed an emergency c-section, that would not be the case.

Let me know if you have more questions!

Hi Jill,

Thank you so much for sharing your experiences. I'm currently under the care of a Peri, and she doesn't seem too concernced with my ileostomy getting in the way of having children. I'm aware of the risks of blockages and obstructions, but the Peri pretty much said those are things we can't predict, but instead symptomatically treat and watch for.

Was your obstruction caused from scar tissue?

I do have concerns regarding my stomach and how the skin is going to stretch. Did you have any problems with the stoma detaching from the surrounding skin as your belly grew? I try to imagine what the stoma area will look like on a 9 month pregnant belly, and it scares me a bit!

Also, how did you empty the bag after your belly got big enough to not be able to see? I figured I would just invest in close ended pouches and dispose of them after each use, instead of having to hassle with emptying.

I really appreciate your feedback. Hearing personal experience is SO much more reassuring than googling!

They think my obstruction was scar tissue attaching my uterus to the small intestine. When I started to really grow, the adhesion compressed the intestine. Once I got big enough, the adhesion snapped and the blockage cleared. The Foley catheter tubing helped hold things open until then.

I've had no obstruction issues this time around, so your Peri is right...can't predict it, just be prepared for the symptoms if they occur.

Believe it or not, the stoma is a non-issue. Mine hasn't really even changed much through either pregnancy. No separation, no issues at all. Pretty much looks and acts the same.

As for emptying, I don't find that a problem as I angle my bag between my legs. It's a little more challenging now that I'm 36/37 weeks, but nothing I can't manage. I do however, have my husband help wtih bag changes because I can't see to attach the new bag to the flange. Because of that, I'm not sure closed end bags will be that helpful. Plus, you won't really want to be pushing on your belly in the later weeks. Not that it harms the baby, but it can be uncomfortable.

Feel free to ask away...I totally understand wanting to get first hand experiences!