Resection surgery scheduled

[kernelmom3]

DS (21 years old) scheduled his resection and I have so many thoughts/feelings! DD had hers done 6 years ago so I wanted to get some advice/opinions since it’s been so long.

To make a a very long story short, DS was diagnosed 7 years ago and has had several hospitalizations for strictures, fistulas, and abscesses. He’s been on Remicade since the beginning and after his last hospital trip for an obstruction a few weeks ago (he’s tapering off prednisone right now), his GI and the surgical team agree it’s time for an elective resection.

His GI said since all his problems have always been in one area (you guessed it, the terminal ileum), after the resection he can go off Remicade and they’ll do a colonoscopy in 6 months to see if he needs meds at that time. DS is THRILLED at the thought of not needing infusions and I’m terrified. The surgeon said to space the surgery as far from his last Remicade infusion as possible to reduce the risk of abscess. I’ve never heard that, is that because of the immune suppression?

I’m excited for him and hopeful that this will help. This is all happening 3 weeks before he goes back to college for his senior year so I’m nervous about that too. Any suggestions, experience, advice is MUCH appreciated!!

 

[pdx]

I don't have any advice or experience to offer but would appreciate if you would let us know how it goes for him. My daughter's disease is also focused at her terminal ileum, and she may need a resection at some time down the road. I hope that his surgery goes well and leads to a long remission!

 

[Maya142]

I'm going to tag some other parents who have more experience with surgeries (or discussing surgeries) - @Pangolin recently mentioned her son had a stricture removed, and I know @crohnsinct has a daughter who may need surgery, although not for a stricture. But she is likely to have the most up-to-date info regarding biologics and surgery.

My daughter had a suspected stricture in the duodenum and while it eventually turned out to not be a stricture, we were told she would need to remain on biologics to prevent Crohn's from causing inflammation in other parts of her bowel. However, she also had disease in her colon and terminal ileum, so that's probably why. But in general, over the years on the forum, I've heard you can possibly reduce therapy (such as less frequent infusions or a lower dose of Remicade) but not stop it. I'd be especially hesitant given a history of fistulas and abscesses...those could come back if he's off meds.

Is his resection going to be laparoscopic? I'm asking because my daughter had an open abdominal surgery for another condition and it did take her 3 weeks to return to school and she wasn't allowed to lift more than 10 lbs for 6 weeks (relevant only because she was a chemistry major and labs included carrying equipment sometimes and being on her feet for 5 hours or so, which was hard with with a 4-5 inch incision (the scar did shrink considerably thankfully).

 

[Pangolin]

In my son's case, the surgeon insisted on a feeding tube or steroids for a couple of weeks before doing the surgery. We chose the tube, which helped substantially with its semi-elemental formula. He gained a little weight before surgery, and the surgery went quite smoothly. The day after surgery, there was some vomiting and there was enough pain, but overall the whole surgery experience was not too awful. I don't have much in the way of tips for surgery right now. After surgery, the inflammation did come back, but we switched meds to Stelara, which seems to be working much better than all the previous treatments.