Advice please- small bowel CD surgery

[pais16]

Hello, I am newly registered to this forum. My SO (we have a 7 yr old son) has had CD for over 20 years, formally diagnosed 4 yrs ago. He has stricturing CD confined to the small intestine. Surgery was strongly recommended 2 yrs ago but he refused. Long story short- around october he got so much worse, he no longer had a choice but to undergo surgery. Small bowel series indicated at least 5 strictures. Spent 3 weeks on TPN before his operation last friday. Thankfully, we sought out one of the best Crohn's surgeons on the east coast, out of NY Presbyterian. His surgeon actually is a "pioneer" of the newest type of bowel sparing strictureplasty- SSIS. Turned out he had 20 strictures- so much for those scans!! Luckily he had almost 23 feet of small intestine to start with and the first 12 and last 4 1/2 feet were clear- the 6-7 feet in the middle were severely diseased. His surgery was almost 7 hours long and included 8 operations...He had 3 H-M strictureplasties, 1 Finney, 1 SSIS-Michelassi method (covering 6 of the strictures), 2 resections (one was 3 inches, the other 13 in.) and of course they also took out his appendix. I am wondering if there is anyone here who has had such extensive surgery in one shot like this and what we should expect once he comes home. His bowel is just "waking up" today so clear fluids were started. Our biggest concern is "protecting" him from our very active 7 year old. I would think with so much work done it will be awhile before he is fully healed internally? Any advice, input, or sharing of experiences is welcome! Thanks!

 

[Nyx]

My surgery wasn't that extensive, but I did have open surgery for a colostomy. I was feeling 'back to normal' after about 4 months. I was out and about after 3 weeks. I have a 10 yr old and a 5 yr old and I just told them no jumping or bumping into my belly. They understand.

 

[pais16]

thanks Nyx..we are really worried about our son, he has ADHD and tends to forget things we tell him. Of course he would never mean to hurt him but with all that extensive work done in there, it's scary.
New update- they started clear fluids last night and into today as they were hearing bowel sounds, but now there has still been no gas. If nothing passes out that way by tomorrow, the surgeon is sending him for an upright x-ray. Am wondering what that would show? Am guessing it would indicate any distention pressing on other things??

 

[Dekar]

it took me a while to fart after my surgery (LOL). is he able to walk around? that helps to get the motor running

 

[pais16]

Dekar- yes he has been moving around a lot actually. It hurts but he says getting a little better each day and he still has his button for pain meds. Finally some gas today!!! Yay!..funny to become so excited over the small things in life, lol...
Clear liquids till tomorrow, then hopefully some soft food. They are going to start weaning him off the TPN. The resident said maybe another 3 days...with any luck he will be able to come home by monday. We are from NJ so its really hard having him over in NYC and its already a full week tomorrow since the surgery.

 

[archie]

Hi i have just had an ileo-cecal resection 3 weeks ago, not nearly as extensive as yours but I have a 4 year old and a nearly 2 year old and my tummy is pretty much their trampoline before and a little bit after surgery!!!!, my surgical site wasn't overly painful but I did suffer a lot of back pain from the epidural and shoulder tip pain from the free gas in the abdomen, but after the 1st week this settled. I've also had quite bad migraines this week (possibly due to stopping the pred though). It takes at least 6 weeks for the internal incisions to heal so he'll have to be quite protective and avoid un necessary straining or lifting. I'm 3 weeks post surgery and have very little pain now and able to do more physically everyday. Hope he's feeling better very soon the 1st couple of weeks are rotten especially since he's had such major surgery.

 

[pais16]

thanks so much for your input Alice. He came home two days ago and so far so good!! Our son has done okay so far, with lots of reminders from us.
He is feeling pretty good- amazing actually all things considered. He actually ate a slice of pizza a couple hours ago and seems to have no ill effects and worked from home most of the day. The worst part was the transition from IV pain meds to oral. He had been using so many different narcotics over the years, and had such high tolerance. He pretty much went into withdrawal when they switched him. But he's okay now with the oral meds and thats a story for the other thread about CD patients and pain meds!!

 

[braveheart]

I had 8 strictureplasties in my surgery in 1994.
I had terrible times at the hospital (PAIN!), but after some time I felt like a millon bucks.

Now I am considering having a second surgery, I have many narrow places again.

 

[pais16]

hello braveheart...
Did you have 8 individual strictures or did your strictureplasties cover more than one per? Wow- 1994 and okay till now? That sounds like a good run. Have you been on any medication?