Anyone pregnant with an ileostomy?

[Wilsonion]

My first post! I am 12 weeks with my 2nd and have an 8 month old ileostomy for Colitis. The ileostomy is the best thing have ever done, I'm just all confused about being pg with one; changing type of bags, stomas prolaspsing/getting bigger, pushing out a baby with one (does it not pop off??!)

Anyone currently in the same position/further on?

Congratulations! Unfortunately I have no experience in this but I am sure if you contact your specialist or stoma nurses they may be able to advise. Midwife will also be able to advise too.

The stoma nurses will be able to help you with all this stuff. Most people manage just fine, your belly expands slowly enough that your stoma can adapt, although you may find you need different bags but not everyone does. In terms of the birth, you’ll usually have a discussion fairly early on, involving your obstetrician and colorectal surgeon to discuss the best plan. It depends a lot on exactly what surgery you’ve had and if any more (e.g. pouch surgery) is planned in the future as to whether a vaginal delivery or elective section is the best plan.

Thanks for replies and congrats!. Yes I’m in contact with the SCN and have my first appt with consultant next week. I guess I also wanted to see if any ladies on here are also going through the it at the same time ....

Would be interested to hear how you are getting on @Wilsonion as I also have an ileostomy (permanent, so no rectum either) due to colitis, and am hoping to start trying for a baby soon!

I have a colostomy and I'm 28 weeks pregnant. I also have a parastomal hernia which causes my stoma to "grow" and bulge out. I was already using convex bags due to the hernia and I've not had to change. I was concerned that I would need a larger hole as I'm cutting at the maximum due to the hernia and my growing bump so I contacted various suppliers and requested samples. This was about 8-10 weeks ago and I've not had to change. I'm hoping to stick with the same bag type until the end.

Suppliers were really helpful in finding products to suit, I just found contact details online and sent emails.

Congratulations on your pregnancy :)

Hello both, thanks for your replies. I'm now 23w and just back from a week in Crete with no massive issues, so that was positive.

However, I also think I have a parastomal hernia, it's no bother but defo more rounded. Wonder if it will get bigger as I do? Also have a slightly prolapsing and slightly more swollen stoma - not sure if is down to the heat but have an appt with SCN on Monday to have a chat. Also having more partial blockages too but I can shift those normally with fizzy drinks. Hope it doesn't get worse.

I also changed from my usual sensora mio convex for their new concave and was a disaster! On paper the samples should be perfect but I had 3 leaks in 2 days, so I clearly need the convex (or I just wasn't big enough at that point). Shame as I really wanted the flatter profile as the convex is really starting to stick out. @ANewHope18 are you finding that too with the convex on the bump? Or it might just be the position of my stoma.

@starkid This is really exciting. Presumably the op means no/less meds and a happier healthier you, meaning a baby is now a viable option when it wasn't before. I'm excited for you x

Hi both, it's great to finally find other people with stomas who are currently pregnant and to hear there aren't too many complications. Congratulations for both of you!

Thanks @Wilsonian , I've had my stoma for 3 years now after a very short but extreme bout of colitis, and yes have no meds or anything and feel great (except missing corn on the cob and ferrero rocher!)

I'm worried about getting pregnant in the first place to be honest, I've heard that having the rectum removed (like I did) affects fertility so to have the surgery after having children... which I didn't know about. Will have to wait and see I guess?

Have you both had to have more scans than normal, and are you deemed as 'high risk'? Also, have you discussed (with your midwife? doctor? consultant?) whether you'll be aiming for c-section or regular labour?

Sorry for all the questions, it's so rare to find anyone else in same situation I hope to soon be in!

Glad to hear you're both doing so well too even with hernias! :)

Glad you enjoyed your holiday! That's funny I tried the sensura Mio concave as it sounded perfect for me but I also leaked. I think it's too hard a base plate. I use a salts convex and luckily it still fits. I'm cutting at 52mm due to the size which I think is caused by bump and hernia.

I've had my stoma for 4 years and the hernia for probably around 2/3 years. I met with my surgeon at around 19 weeks due to partial obstructions and to discuss a repair, he told me that as baby grows there should be less pressure from the hernia rather than more which was a relief to here as I was feeling a lot of pressure and pain. The hernia is definitely still there but apart from an incident following iron tablets I've had no further obstructions (touch wood) and my stoma has not grown any more.

The hernia has caused my bump to be lopsided which does bother me a bit. I look further along from the left than the right :)

@starkid I'll be having an elective c-section on the advice of my gastro consultant, my stoma was placed due to fistulas (Crohn's) and repairs haven't worked so it could cause more damage if I had a vaginal birth. Due to the stoma I'll have a colorectal surgeon in theatre during my section in case my bowel is damaged when they cut. There could be scar tissue so they're covering all bases but it should hopefully all be straightforward.

I've had 6 scans so far but the early ones were due to a previous chromosomal abnormality in my last pregnancy which was spotted at my 12 week scan and confirmed by CVS. This was not related to Crohn's or the medications I take, it was purely just one of those things. From 20 weeks my scans have been to check growth due to Crohn's meds (azathioprine and remsima) I am consultant led and have discussed my medications and birth plan with my gastro consultant who I've seen twice during pregnancy and I'll see him again next month. I am well looked after, my obstetrics consultant has been in touch with the surgeon and gastro team.

Removing my rectum is the next step for me as meds aren't really helping. I was told that this could effect fertility but I don't really know more about that. Maybe your gastroenterologist could refer you to discuss this or he/she may be able to advise. If you're ready to try I would go ahead :)

Sorry, my reply is a bit of an essay!

It's great to hear you're doing so well and have only had one blockage so far, and that you are being well looked after with your team. I've read stories of doctors and midwives being confused and not knowing what to do about people with stomas!

Has the bag made scanning difficult?

Everyone involved so far has been great.

No issues with ultrasounds, I wonder if that might happen now I'm further along, next scan is at 32 weeks.

Hey, I have to have more scans due to first child being low birth weight, nothing to do with ostomy but then am off all meds as UC seems to have disappeared completely with colon. Have had 3 scans so far but others at 28, 32, and 36. @ANewHope18 I’m sorry to hear your news about your first pregnancy, a new hope indeed for this year.

All medical team have been great. No eyelids have been batted over the bag. I had to have a longer scan for 20w growth as she was hiding behind the bag and they couldn’t get measurements so I went away to have chocolate and came back and she’d moved. You keep your bag on and they work around it.

@starkid there is a Facebook group called Ostomy and J Pouch Moms. Women from all over world, so many success stories of pregnancy post rectum removal, but also lots in your position, reckon you’ll be able to ask lots of questions re TTC on there.

Consultant has recommended CS. Only because my last delivery was induced ending in emergency CS, so they don’t know I can labour properly. They absolutely need to avoid an emergency CS this time round because of the scar tissue (have had CS, Colectomy and appendicectomy). They would like to have lots of time to figure out the best way. I’m totally fine with that. I’m an expert at stomach surgery recovery by now anyway ;-)

Hi @Wilsonion @ANewHope18 - how is it going for you both? :) My maths might be out of sorts but think you'll both have gone past due dates etc by now? :)
I'm still TTC at the moment...

@Wilsonion @ANewHope18 @starkid
I know this was from last year but only just joined Mumsnet! Had been searching online for advice on ileostomy and pregnancy and this thread popped up. I'm currently 20 weeks pregnant and have had my ileostomy for just over a year now (have Crohn's). Was just wondering if you have any more info to offer on pregnancy/labour etc with a stoma! Thanks!!

@russell20 - hi and congratulations!! Fantastic news you must be so excited. I'm sadly still ttc, on cycle 13 now... So no advice from me but hopefully one of the others can help? I'd be interested too!

Hi, I have an ileostomy (crohns) and currently 38+5 - so unable to share anything about labour yet but might be able to help with any other queries 😊

Hello just an enquiry I am early on in my pregnancy and I have an ileostomy I have had my stoma for 3 years now and no problems. This week I have been suffering from severe lower abdominal pain and pain in my uterus which comes and goes I’m wondering if anyone’s had any experience with this and ways of managing it?
Thank you