Week 8: Planning for bowel reconnection surgery

Well Week 8 has turned into a busy one! So many blog updates this week with progress.

Today we were given a date for Clara’s next operation. It’s a big one, she’ll likely be in surgery all day, and it’s the next huge milestone.

On the 8th March, 2018, Clara will have her bowel reconnected.

The diagram below shows Clara’s current set up. She has:

• 33cm of small bowel below the stomach that comes out into a jejunostemy bag (pink line represents external skin).
• A 2cm floating ‘sausage’ of bowel that wasn’t dead at the time of her last surgery so they kept it as every centimetre counts for Clara but its unlikely to be viable
• 5cm of lower small bowel that they also expect is no longer viable
• A (hopefully) fully functioning colon

The surgery will involve removing the jejunostemy bag, stitching the 33cm to whatever remaining bowel is viable.

Best case scenario it’s a case of stitching 33cm>sausage>5cm>colon.

Worst case scenario it’s stitching 33cm>colon.

To put this into perspective, she should have 250-300cm of small bowel. It’s no wonder they call it Short Gut Syndrome with just 33cm.

It’ll be intensive surgery: Clara is the only one on the surgical list that day as the operation is likely to last the full day. No stopping for a natter over the coffee machine for these surgeons, or a pop to the shops on their lunch break to return their John Lewis order.

Post surgery will also be pretty traumatic for both Clara and us. She’ll be using her bottom again for the first time in six weeks and it’ll be very very runny. The medicine she has to thicken her stools, loperimide, is used by the small bowel but obviously there’s only a small amount left of that for Clara. She’ll suffer with diarrhea for years. What’s coming out will be painful, incredibly acidic. Other than lavish her in barrier creams, there’s little we can do to help her. She’ll have very very sore skin.

At the moment, emptying her jejunostemy bag is easy, it’s manageable. Moving to acidic dirty nappies will be a new challenge we face, particularly as we are getting so used to taking Clara out and about.

It’s an incredibly exciting milestone, but also extremely nerve-wracking. It marks the beginning of life as we’ll learn to know it with Clara and her Short Gut Syndrome.

The surgeons reassure us by saying she is in much better health than before (compared to her first operation where she was very close to not coming back to us she’s absolutely in better health), and she’s bigger and stronger now. However, every operation has risks, particularly one as critical as this.

She’s surprised us all with her resilience, we just need her to keep that fighting spirit up.

Please, please, keep praying for Clara.