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Hello,

My husband and I are seeking advice and support as we recently went through a scary and discouraging time. I had my colon removed and J pouch/ileostomy formation in December of 2012, with my takedown in May of 2013. I did have a second unplanned surgery in between those two procedures due to an adhesion that formed while I was still in the hospital during my first surgery, resulting in a kink in my small bowel that wouldn’t allow stool to move through.

We were very fortunate to become pregnant on our very first try last August. My pregnancy went relatively well, other than the development of high blood pressure at about 24 weeks and a need for close monitoring and BP meds. I delivered via C section at 39 weeks, and other than a brief time where I had what they think was an ileus that resolved without intervention, all was well. I did end up back in the hospital 5 days post op with a throbbing headache and very high BP, which they think may have been postpartum pre-eclampsia (I was off my BP meds as my pressure completely normalized immediately following delivery). This all resolved and I have not been on BP meds since.

Then suddenly, at 7 weeks post partum, I developed a small bowel obstruction that resulted in almost a week with an NG tube and an open laparotomy 4 days in as they did not think it would resolve on its own. They found I had an adhesion (likely from my first surgeries) right near my old ileostomy site, and my small bowel was twisted around my mesentery at that spot. They informed me it never would have resolved without surgical intervention. 

Nobody can seem to give me any solid advice as to whether I am at very high risk of this same scenario happening again should we try for a second child. My OB told me that in her 27 years of practice, I am the first J pouch patient she’s ever had who has developed a SBO after pregnancy. The colorectal surgeons here in Milwaukee, WI feel that perhaps my uterus expanding and then shrinking back down to size resulting in my bowels shifting, allowing it to get twisted in that old adhesion. They did lyse that adhesion and ran my small bowel to look for others, but didn’t find any. I emailed my original surgeon at Mayo Clinic and she informed me pregnancy shouldn’t affect that and my risk of another SBO requiring surgery is less than 10%. The message across the board has been to weigh the risks and make the decision for ourselves, but medically and anecdotally there is no evidence to suggest we couldn’t try again if we wanted to take the risk. This is leaving us confused and conflicted, as this most recent surgery was frightening and very difficult to go through. Has anyone ever experienced these issues before? Any advice to help us make decisions? We are completely open to adoption, but are hesitant to close the door on another biological child completely until we thoroughly think this through. 

Thank you!

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Congratulations on having a healthy pregnancy (relatively) and baby! I had a small bowel obstruction while in the hospital recovering from my Csection. For me it was a combo of slow moving bowels and most likely risk from the j pouch surgery. I agree this is scary. My plan going into baby number two is more bowel rest-I’ve had success waiting longer NPO x (3 days) after other surgeries. I have not vetted this with anyone however 🙃🙂 I’ve had sbo before this and they are nightmares. If possible, have your surgeon who did the pouch involved as much as possible with baby #2. Wishing you luck and sending love!

Thank you! Did your SBO require a surgery after pregnancy? This is the fear my husband and I have about a second pregnancy. More so we fear the possibility of obstruction during pregnancy, as my colorectal NP shares that in the past, when they have had J pouchers develop obstructions that won’t resolve during pregnancy, they end up hospitalizing them on TPN until it’s safe to deliver the baby. That sounds absolutely awful!! What makes this so challenging is that the obstruction happened 7 weeks out from my C section. Things went so well with my C section surgery, and it seemed almost too good to be true! I guess there is probably no way of knowing how high my personal risk is for another obstruction. I think what my main question is is one that may not be answerable - did my uterus expanding during pregnancy and then shrinking again over those few weeks play a significant role in my small bowel shifting and resulting in it getting caught in that adhesion? If so, that to me is a high enough risk to suggest a second pregnancy could very likely result in the same scenario. I seem to form adhesions rather easily..this was the second time since my first surgery that I’ve had to have an adhesion lysed. My OB was Dr. Julianne Newcomer at Froedtert hospital, and she seemed to think that theory makes sense, though it’s impossible to say for sure. My pouch surgeon is all the way up at Mayo Clinic. 

I would be willing to chat some more/at least stay in touch!

Hi,

I had Dr. Newcomer too and it was an awful experience for me (for the entire pregnancy, delivery and after). Also, I had my baby in 2014 so she does know what a SBO looks like for pouchers after birth because it happened to me--no surgical intervention needed, however.  She would not listen to me and I had to call Dr. Otterson, my surgeon at Froedert, to come to my room to assess me who then ended up taking on my care from the OB team. Would love to share stories and connect more--especially if we are both thinking about baby #2!

My email is juliemk3@gmail.com

So happy we connected and looking forward to talking more!

Julie

I am so sorry you had to go through that! I had a somewhat similar experience yet my obstruction was during the third trimester and no one knew I had it. I have a jpouch (since 2012).

My first trimester was awful, with hypermesis gravidarum I lost so much weight, then had a flare up. Vomiting multiple times a day. I had a TI in second trimester but the vomiting was better. My third trimester was okay until about 35 weeks when the vomiting got worse again. My OB gave me Zofran and I didn’t go see my gastroenterologist or colorectal surgeon because a) I didn’t think it was colon related and b) I’m an idiot!  

Anyway I lost another 10 lbs in third trimester and at 37 weeks my OB said we had to induce because I was so sick. I had the baby naturally with no complications August 2018! 

After delivery I was still vomiting terribly and ended up in the hospital 4 days after delivery with an NG tube due to bowel obstruction. I was there for 6 days without my baby. It was awful! My colorectal surgeon seemed very worried and concerned (more than usual) so I knew it could have been a more dire situation had I not deliver early. I would have been on TPN as mentioned above.

I’m pregnant again now and I plan to see my doctors regularly and to be very cautious about what I eat. I am almost 7 weeks now and my morning sickness isn’t as bad. I do feel dehydrated and like a flare could be coming but I think I can ward it off.

I say go for it and be good to your colon as much as possible. Lots of fluids and light exercise and watch your diet and see your docs regularly. Good luck mama!

Wow ASHLEYANN, that sounds awful! I am so glad everything went well with your delivery and the baby. That is our biggest fear...that obstruction during pregnancy. Honestly, it might be enough to deter us knowing it really does happen. With my OB saying she truly doesn’t think it would happen to me during pregnancy, but hearing that really, it does happen to us pouchers and can be very serious..I just don’t know. 

With being in the hospital for 4 days after delivery and being away from baby for 6, how did things fare with breastfeeding? (If you planned to), if you don’t mind me asking? I planned to EBF but unfortunately my obstruction and subsequent readmission and surgery at 7 weeks postpartum resulted in me not being able to feed or pump for my baby much at all during that time and my supply plummeted. He is now on mostly formula with a little breastmilk here and there...and part of me wonders if my supply was always just a bit on the low side due to dehydration because of my lack of colon and the struggle to keep up my water intake. I am curious to know how breastfeeding has gone for other J pouch mommas. 

And JULIEMK3...really? Wow! I had always liked Dr. Newcomer but that is rather frustrating that she actually does know another patient with the same scenario but either didn’t remember or just didn’t tell me. I have been taking her advice with a grain of salt because she is an OB and not a colorectal surgeon. I chose her as she informed me she has performed the most C Sections on pouch patients at Froedtert Hospital, and I wanted someone who knows the territory. Thanks for sharing and looking forward to staying in touch!

I’m so sorry to hear all about your challenges ladies. I’m one year post takedown and 5 and a half months pregnant. I had one instance where I thought I had an obstruction but I started a liquid diet and it seems to help. I see both my surgeon and gastro doc in a regular basis. My gastro and rheumatologist (I have arthritis and am on Cimzia for that) both suggested I see a maternal fetal medicine doctor. It’s been determined that I deliver by ceserian section with my surgeon on hand. I have had to switch OB practices to make sure I can deliver where my surgeon is located.

I’m afraid something will happen during delivery that will affect my pouch that I haven’t even though about postpartum, with the uterus shrinking and such. Now I’m thinking I should come up with a plan for that as well??? 

It sounds like although the pouch is a good thing for the moms in terms of dealing with colitis, crohns, etc, but try can’t really determine a plan of action for during an after pregnancy! 

I had terrible problems with adhesions prior to my pregnancy, several terrible SBOs (often after flying, now I ONLY eat baby food and smushy stuff on flights), and one awful incident where my guts basically twisted, exploded inside me, was missdiagnosed as an SBO for 14 hours in emergency room before being whisked to surgery, 6 weeks in hospital, drains, tubes, complications, etc... needless to say I have a LOT of abdominal scars!  I did IVF to get pregnant (because of scar tissue), but before/ during all of that I saw the most amazing woman who does soft tissue physical therapy, and between her and doing a lot of castor oil packs and castor-oil/self-massage at home I swear I softened 15 years of scar tissue, my entire abdomen felt better, and made my scars feel SOOOOO much softer, clearing up a bunch of adhesions. I got pregnant, delivered a breech baby vaginally (fought so hard to do that because I just really really didn't want more scar tissue on my abdomen with a c-section, because it feels to me like surgery begets scars  tissue= more adhesions). I did have a blockage the day after I gave birth, but it passed with NPO after a day, and I had my baby with me the whole time. My doctor said of course that could happen because it takes 9 months for your guts and everything to sort of slowly move up and around during pregnancy, but then in a short day or two everything plunks back into place after baby is delivered, and it sort of needs time to sort its way around again. So i would start doing castor oil packs (easy to do, look it up. VERY VERY VERY helpful for anyone with scar tissue!!! changed my entire abdomen. I will do at least once a week for the rest of my life to help my scars/ prevent adhesions). But I would also be careful what you eat after you give birth. 

Who knows!!! I am currently dealing with structure and anemia, and trying to sort that out so I can attempt baby number 2! 

Update for those interested:

We were able to get pregnant a second time last June, and I had a relatively smooth pregnancy aside from a late Gestational Diabetes diagnosis and some repeat Gestational Hypertension this time around. I gave birth in March to a perfectly healthy baby and have so far had NO bowel complications postpartum!! I feel so fortunate not to have had to deal with a SBO this time around. I am hoping things stay this way. I have another surgery to face in the future to repair a substantial incisional hernia and excise and revise my large midline scar from my SBO repair surgery 2 years ago, but otherwise am hoping for no more surgeries for a while - if ever again! 

We may be finished having children at this point, but will re-evaluate in a couple of years.

Thank you all for the advice/replies! This time around what I feel helped me was to avoid all opioids post-C-section (just took tylenol & ibuprofen around the clock/IV toradol inpatient), get up and walk a lot once my legs were working again after my spinal, and start very slow with eating. No ileus this time either!

Second update: I spoke too soon. A couple weeks ago, about 5.5 months postpartum after having my second son, I developed another sudden, serious SBO. My bowel twisted itself in some scar tissue again but this time it was a closed loop obstruction. I was taken into emergency surgery and when the surgeon found the problem he told me that loop of bowel was black and dying. I was close to serious complications, including possible perforation. I am very lucky I went in immediately upon the start of symptoms.

Needless to say we are sad and frustrated that this has happened again, and have decided we should be done having children as a result. This was my 7th abdominal surgery since 2012 and we know that another planned C section and high likelihood of another obstruction postpartum based on what has happened so far is too risky. I was so happy I had made it so long without any issues compared to last time! Guess  my body is just extremely prone to adhesions and obstructions if things shift around too much. I feel very blessed to have my two healthy sons after everything I have been through.

Wishing everyone the best, with health and happiness moving forward!

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