Pregnancy w Stoma vs. no Stoma

Former Member

I am stuck between a rock and a hard place and am hoping that someone can provide me with some guidance.

I am 30 years old and have had (sorry - HAD) UC for 5 years.

I was managing my UC very well with Remicade....... UNTIL the neurological symptoms started. Needless to say, I was immediately taken off the Remicade, which is when all the trouble began (or began again). I managed to fight an uphill battle with my UC for 7 months until I was left with no choice but to have emergency surgery. I now have a sub-total colectomy and will need another 2 surgeries to make the j-pouch / re-connect in the future.

Of course, it is great news that the stoma/pouch is not permanent. HOWEVER, my husband and I have been discussing starting a family (actually we started the discussion a while ago, but my health issues keep delaying the process) and I am now faced with the decision of being pregnant with or without the stoma.

My doctors feel that I should get pregnant with the stoma and have the j-pouch procedure after delivery for the following reasons:
- it would allow me to have a child earlier in life (if I have the surgeries first I will have to wait 2 years before I can start attempting to conceive - taking into consideration the wait time between surgeries and to give time for the j-pouch to heal properly);
- it would be easier on my body/avoids stress to the j-pouch (which decreases the chances of pouch failure); and
- to avoid potential decreased fertility issues (apparently the j-pouch procedure increases the chance of infertility to 40% due to the potential for scaring around the fallopian tubes).

I, however, am concerned about being pregnant with the pouch because:
- I really dislike the pouch and would like to have it out of my life as soon as possible. In fact, I am having a very hard time mentally adjusting to the stoma/pouch;
- the fact that the pouch will be even more visible with a protruding pregnant belly and in maternity clothing; and
- I feel it will be very hard to empty the pouch in the later stages of pregnancy.

Further, I would have to undergo the next surgeries with a small child at home. Frankly, recovery from the first surgery was incredibly hard and I can't imagine also having a small child to worry about.

I know I should go with the doctor’s advice and have the surgeries after pregnancy, but I am still worried about the mental toll it will have.

I am sure others have had to make the same decision. I would be grateful if they could provide me with some advice. PLEASE!

Thank you!

8/27/1211:53 AM

❤️ 0

Original Post

Replies sorted oldest to newest

JillMMember

I have a perm ileo after failed j-pouch. I has four abdominal surgeries to get to the perm ileo and when I started trying to get pregnant we couldn't. After 18 months trying we went to IVf . We are unbelievably lucky to live in a state where fertility treatments are covered 100% by insurance. We were also lucky to get pregnant first try w IVf three times - twice resulted in full term pregnancies w c sections (kids are six and 4), the middle pregnancy I
Miscarried.

Both pregnancies were w my ostomy. The ostomy was no problem during pregnancy, emptying never a problem, showing throu clothes never a problem - pregnant or not. What was a problem were the surgical adhesions that caused a near total obstruction and almos caused a need for surgery at 22 weeks pregnant.

All this to say that you really should have your kids with as little surgery as possible
Leading up to it. For your sake and the baby's you need to minimize the possibility of adhesions and such. Not to mention the ordeal and
Cost of IVf if you do have fertility issues.

I've had my ostomy since 2001 and am very
Comfortable w it now. Should you ever want to chat about the ostomy, or pregnancy, feel free to PM me.

8/27/125:02 PM

❤️ 0

Gemini-KMember

I am in the exact same situation that you are...

I had my Step 3 Takedown Surgery in January, but severe cuffitis developed almost immediately. None of the many different medications were able to cure it, so my only option was to have another temporary ostomy created. Hopefully this diversion will help the cuffitis to cure.

I had one child when I was 30, and I would like to have another child soon. Option 1 is to try to get pregnant now, with IVF and have a child (and more children) while I'm feeling healthy, then go in for the second attempt of the takedown surgery - or - Option 2 is to hold off trying to get pregnant until after the second takedown surgery is performed. The negative for this option is that the first attempt at a working j-pouch didn't work for me, if it doesn't work for the second attempt I'll need a permanent ostomy. This will add a lot of time before I would be healthy enough again to try to conceive.

Thank you for posting this. I'm going to follow this post to see the pros and cons for both from anyone who has advice.

Good luck to you.

8/30/123:11 PM

❤️ 0

Kate1026Member

I had a failed j-pouch and I've had my ostomy for over a decade now. I gave birth to my daughter in May and had basically no issues with the stoma throughout the pregnancy and delivery.

I actually thought maternity clothes did a GREAT job of hiding the bag. I preferred the "full panel" style maternity pants with the wide, soft, stretchy waistband that covers most of your belly. The full panel did a great job flattening and supporting the bag without being constricting. I also wore dresses a lot and wore the "Bella Band" underneath them to support the bag.

I had no issues emptying it, even at full-term.

In my humble opinion... your chances are better to have a conceive naturally and have healthy, full-term pregnancy than they are after two more surgeries, more scar tissue, and you being a couple years older. Don't throw that away just because you don't like the bag.

Think about this - if you did have the j-pouch surgeries now, and in two years you tried to get pregnant and found you need IVF because of scar tissue, how would that make you feel? Would it be worth it to have to spend the money on IVF, give yourself countless injections of hormones, go through the invasive procedures involved in IVF, just so you could get rid of the bag sooner?

Also, remember that pregnancy with a j-pouch is not without issues. Many pregnant women with j-pouches suffer from increased bowel movements, urgency and incontinence due to the effects of hormones on the digestive system and pressure of the uterus.

8/31/1210:31 PM

❤️ 0

Gemini-KMember

Thank you for this, its great insight and certainly gives me something to think about.

9/9/1211:35 PM

❤️ 0