Hi,

I am new here and currently on remicade, I am not responding 100% to it after 4 infusions. I am 36 years old and am trying to weigh my options.

I don't want to delay surgery but also don't want to have to wait years to have a child.

Thank you,
Beth

I empathize with your situation.

I guess you need to determine the likelihood of a medical solution to your UC. Do the doctors feel that you will achieve a remission? Do you? If so, do they/you believe it will be a long term remission?

The most important thing if you want to have a baby is to be healthy. So you need to work that out first. You want to avoid taking drugs if you can while pregnant, but some are more problematic than others so you should talk that through with your doctors too.

Something to keep in mind is that abdominal surgery can cause fertility issues (doesn't always, but can). So, recently drs have been recommending that women of childbearing age/planning a family soon have a three step surgery where step one removes the colon and creates an ileostomy. Then you would have your children and finish the j-pouch surgeries after child bearing.

Having had a j-pouch and then a failed j-pouch, I carried two babies with an end ileo. But I did need IVF due to scar tissue impeding the egg and sperm from meeting naturally.

Another factor to consider is that you are approaching an age where risks go up even without your medical issues. When I went to the fertility clinic at 34 I was told I wasn't old, but I wasn't young either. So if children are a priority, you should work out how to do it sooner rather than later. You will need to try for at least 6 months before you can test for issues. If you do have fertility issues, that process can take several months, so you are looking at at least a year once you are healthy. Of course, you could get pregnant naturally and that would be great, but you still need to be the healthiest you you can be.

Feel free to contact me if you have questions. One of my pouch girlfriends lives in NH but used a Boston high risk OB and that's the one I went to. He was really helpful to talk to even before I was pregnant, so you might consider getting a high risk OB to evaluate the situation and advise you on meds and such since they deal with the issues all the time.

Jill gave a thorough and thoughtful response, as always. I also wanted to point out that you really can't count on any timeline after surgery, because it's always a possibility that there will be complications. When I had my first surgery (of 3), some of my docs were recommending doing any additional pregnancies with the temporary end ileo before going forward with pouch construction and takedown. I decided to take my chances, hoping that I could try for a pregnancy sometime after takedown when I felt fully recovered and adjusted. Well, I had my takedown in March and it was a miserable summer, because there's a problem with my pouch. So I'm going back for another temporary ileo then getting a revision surgery and takedown surgery later (another 3 step procedure). We plan to try to get pregnant sometime after getting my ileo back but before the revision surgeries.

So, all that is just to point out the potential risk in planning for a pregnancy X number of months after your surgeries. I did just that, because I didn't want to be pregnant with the ileo or put my family (with at least one older child) through more surgeries and recoveries, so I decided I wanted to just get all my surgeries over with and then move on with family, but it didn't work out way. Not only do I need more surgeries, delaying pregnancy even further, but if I have another pregnancy it will probably be with the ileo anyway. Not saying I regret the decision, but if I could have seen into the future I might have chosen to try and get pregnant after my first step 1. Of all of my times in between surgeries, the time between steps 1 and 2 (with the temp end ileo) was the easiest. Hopefully your pouch will be much better behaved than mine, but there's no guarantee.

Just some more thoughts to add to the mix, I completely understand what a difficult, complicated decision it is. But I do believe that you have to weigh all the options, decide what is best for you and your family, and not look back. We could all drive ourselves crazy playing "what if?" but it doesn't really get us anywhere. I wish you all the best!

Hi Beth,

As the other ladies pointed out, you never know what can happen after surgery. However, we were very blessed to conceive on our first try, which was 6 months after my takedown. We now have a beautiful almost 3 month old baby boy. Wish you the best :-)

It's a tough call. On one hand, I wish I had tried before having surgery, but I wasn't in a place in my life to do that. Pregnancy actually slowed down my GI system so that would have been great while I was still sick. But afterwards, being really sick with UC and taking care of an infant and then a toddler would be really, really not fun, and going in for surgery and then being basically unable to hold, pick up and carry your baby for a really long time would suck a LOT. More than you know. You'd probably have to wait until the kid was at least old enough that it wouldn't be a huge burden on your spouse to care for them alone while you are completely incapacitated and recuperating, and then get a nurse in to help you as well. It's a lot to ask of a spouse.

OTOH, if you wait til after the surgery, you have a pretty high risk, as many of us have had, in not being able to conceive, and IVF is no guarantee and is very, very expensive. But then you have your health and your strength, and hopefully no need for future surgeries. It's very hard to say what's best for someone else. Both situations have positives and negatives.

hey there,

just my experience....remicade did not work for me either. i had the two part j pouch surgery, and part of my reason (although truthfully i didn't have much choice) was because we wanted another child. my doctors told me after a year post-op i could try, which we did. i conceived my first child (pre-uc) very easily....actually she was "not planned" so....anyway, after uc and the surgeries it took me a year to get pregnant with my second daughter. my doctors insisted i have a c-section which i did and delivered a healthy girl, i was 30. unfortunately i lost my pouch several years later...but that is another very very long story and i do not believe having my daughter had anything to do with it. have a permanent ileostomy now and even if the pregnancy was even a tiny bit responsible for my losing my pouch...she is SOOO worth it. even 25 surgeries and perm ileo later...would never give her back, lol!!

good luck...i hope it all works out well for you.
Mikaela