Mental health, J pouch & pregnancy

Hi,

I'd really like to hear from recently pregnant women with a J pouch - how did you handle pregnancy? Did you have any problems/pain/complications?

I had a total colectomy at 20, followed by a J pouch five months later. I'm now 39 and want to have children, but didn't realise the suppressed trauma I had from the surgeries. I've had bouts of pouchitis every year and have been hospitalised in the last few years for a twisted bowel and gastroenteritis, as well as 3 DVTs (blood clots). I'm on blood thinners and would need to switch from pills to a daily injection once I'm pregnant. 

Despite all my health issues, I'm very fit & healthy and Gastroenterologists and doctors have given me the all clear for pregnancy. I know that I can choose to have a vaginal birth or C-section, but I'm afraid of both. I'm worried about pressure on my pouch during the pregnancy, tearing with a v birth and being opened back up again for a C section. 

I would appreciate your honest stories to help me with my fear. My husband and I would like nothing more than to start a family. 

Original Post

Hi there, I had the colectomy and j-pouch surgeries at ages 14 and 15 and gave birth (vaginally) to my son at 28. (He's 15 months old now, so this was last year.) I did not find that pregnancy was affected by my pouch/medical history at all. At most, I think scar tissue may have caused me to carry the baby all in the left side of my abdomen (or maybe he just liked being over there?), which put some excess strain on my back/left shoulder, but obviously this was a pretty minor issue in the grand scheme of things. I was very nervous about the vaginal birth/c-section question as you mentioned above, but I had doctors who believed my best shot at minimizing risks was to try for vaginal and do everything we could to reduce the risk of tearing. I ended up with a 2nd degree tear, so it was confined to my vagina and had no impact on my rectum/pouch. Also, this wasn't part of your question, but I also wanted to note that I did have pouch-related infertility. We ended up going through IVF in order to get pregnant.

Happy to talk more if you like, but all this is to say that I understand your fears. There are a lot of unknowns going into pregnancy/birth, and no one can predict the outcome. It's especially frustrating with our complicated medical histories, when it feels like there's no standard set for how we should proceed. All we can do is research, consult with the people/professionals we trust, and make our best-informed decisions. Wishing you the best of luck!

Hi MWB I am six months pregnant and just wanted to let you know you are not alone in all your fears. I had my three step procedure in 2017, about four months after my take down felt well enough to attempt a few rounds of a medicated cycle but the hormones made me feel terrible and I decided to throw in the towel and was happily surprised to be pregnant a month later. I had three miscarriages prior to my surgery (two most likely from my UC going undiagnosed, the third while diagnosed and on Humira was chromosomal) and after my first operation to remove my colon I was rushed into emergency open surgery for severe internal bleeding because of how diseased my colon had been. All that is to say, the emergency procedure I went through as well as the miscarriages has created a lot of anxiety for me in pregnancy. Added to that, I really think feeling the normal tired, run down, aches and pains etc of pregnancy envokes a ptsd sort of anxiety for me because it subconsciously reminds me of all the years I spent sick, undiagnosed, and desperate. I did start taking Wellbutrin after my first trimester which has helped though I still have to remind myself that my pregnancy symptoms do not mean my body is failing me or my baby quite a bit. 

Regarding the pouch, I have had a couple rounds of pouchitis but I was dealing with that before becoming pregnant so my pouch is not really behaving any worse than it was before pregnancy. I am starting to experience more frequency (bladder too) just from the baby’s growing size. 

Regarding delivery, I share your fear of both options 😊 my ob has advocated for a vaginal birth because I had two uneventful vaginal deliveries of large babies prior to all this. However, she has said she is willing to go c-section if that is my decision. There are pros and cons to both so I continue to mull it over and hope the answer will come to me in the next couple of months. If you have never given birth before I believe the general consensus is a c-section since you do not know how your body would handle labor but your OB should be able to discuss that more. 

Good luck!

I don't have an experience to share, but I am also 39 and have been hoping to have my first child. My first surgery was an emergency surgery and I was quite sick, so the trauma thing resonated with me as well. (Fortunately, thanks to Cleveland Clinic, my following surgeries were nowhere near as traumatic, but no surgery is easy). I also had a twisted bowel at one point- I've been told childbirth is much easier than that experience.

Wishing you lots of luck and maybe we will both have easy journeys in the next year!

-Lina

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