Posted 5/25/2017 5:28 AM (GMT 0)
Hi! I had a similar surgery a few years ago. I probably put the surgery off too long because by the time it was clear I really needed it and there were no other options I was very sick and actually too sick for the surgery. I was on TPN, IV antibiotics, and 24/7 pain meds for about 12 weeks before I finally had the surgery. I had an open resection and stricureplasty and ended up having about 3 feet of small bowel removed.
Since I was so sick going into the surgery I think my recovery was a little longer than usual. I was in the hospital for about 2 weeks following the surgery. I was no longer on TPN when I returned home and started weaning off the pain medication immediately. My surgeon wanted me to take 5 months off from work but as soon as I was off the pain meds I was going stir crazy. I had surgery in September, weaned fully off pain meds by end of October, back to work November 1. I went on Cimzia about 1 month after my surgery. Prior to surgery I was on Remicade and my surgeon wanted me off for as close to 2 months prior to the surgery as possible. When I consulted with the Cleveland Clinic at the time, they said that their policy was patients had to be off Remicade for at least 2 months prior to surgery or the automatically require a temporary ileostomy for recovery. This may have changed since then, but I know the reasoning was because biologics can disrupt healing.
The D was bad and never returned to normal but did let up some. I have D everyday several times a day and have trouble with nutrient absorption because of this. This is probably due to losing so much small bowel, especially the TI. I tried everything to slow things down - Lomotil, Immodium, Codeine, Questran - nothing really worked and most just caused uncomfortable cramping. I have managed to make this my new normal and am pretty used to it by now, but I do think it has agitated my rectal Crohn's, causing a new fistula and abscess. I also have trouble keeping my weight up despite how many calories I take in a day. It honestly is hard for me to tell if my issues are Crohn's issues or more related to my surgery.
Are you having the surgery with a colon & rectal surgeon? He/She should be able to advise you on what meds to take prior to surgery. My main piece of advice would be to preserve as much bowel as possible and see if the surgery can be done laproscopically. This is a complex surgery, make sure your surgeon is fully qualified for the job.
Obviously a surgery like this is no joke and it is rare that you will walk away with absolutely NO lasting side effects, I will say that I see mine as successful. I obviously still have struggles with the D and fatigue, but this is manageable by acknowledging my limits and resting when needed. Prior to surgery I was in chronic pain daily and was taking Tramadol regularly for it. It got even worse leading up to the surgery and was so disruptive that I was unable to eat, sleep, or stand up straight without massive amounts of oxycodone (literally, I impressed the hospital staff with how much 110 pound me was taking and still completely awake and lucid). I obviously have discomfort from time to time now, but nothing like the pain before and I have not needed pain medication since weaning off after the surgery.
Good luck with your surgery, I hope it brings you some relief!