Posted 9/2/2014 12:30 AM (GMT 0)
Hi, I'm so sorry that you are going through this. Having to make the decision between having or not having surgery is very difficult.
I know that everyone's situation is different but I would like to share my experience with a bowel resection.
Here's my history:
I was diagnosed with Crohn's in December 2012 and had a 10 day hospital stay due to a perforation in the terminal ileum. I was able to avoid surgery, and treat the perforation with just IV antibiotics and pills upon discharge. There wasn't much improvement and had another bad flare that landed me in the hospital February 2013. Scope showed the perforation healed but looked to be having some scarring. I was put on Entocort, Flagyl, Cipro, and Pentasa. Never going into remission.
May 2014, I had a partial obstruction, several strictures, and a possible abscess or fistula that wasn't visible on the CT Scans, MR Enterography, and X-ray series. At this point, my GI recommended I see an IBD expert because the surgeons at the hospital figured that I will be needing a resection. As they put it "it is a matter of when, not if" I will be getting surgery. So my GI wanted me to get a second opinion. He started me on Humira and 6-MP, and continued with the Flagyl and Pentasa.
The 2nd GI, agreed but wanted me to see a colorectal surgeon. The other surgeons I had seen before were all general surgeons and the 2nd GI wanted to get the opinion of someone who specializes in these types of surgeries. Once I met with the colorectal surgeon, he too confirmed everyone's suspicions. I needed a resection. I scheduled it for 3 weeks from that day.
I think at this point, I had been in pain nearly everyday and my diet was very limited to the foods I could tolerate. Mainly smoothies/purees/soups. Humira helped, but I think it was a little too late. The damage had been done. So I decided to go ahead with the resection. I couldn't continue living practically on a liquid/soft diet.
Of course I had my reservations about having the surgery at all. Was it the right decision? Should I try to just do a complete overhaul on my eating/lifestyle? Maybe if I lost some weight, I could be more active and help digest foods better. But no. That was being unrealistic.
So the first week of August 2014, I had the bowel resection. It was supposed to be just the part with the partial obstruction (where the perforation was from December 2012) and several strictures. At best it was supposed to be just 14 inches with room to spare. And the goal was to do all that laparoscopically.
The actual outcome was a little different. The partial obstruction was worse than they thought causing my body to create 2 fistulas to the sigmoid colon. As my GI explained it "a fistula is natures way of bypassing the diseased part". And the "skip" strictures spanned a little longer than anticipated as well.
In the end, I had two resections done and 18 inches taken out along with my appendix. The resections were done where the small bowel meets the colon, and the second where fistulas had connected to the colon. I have 3 tiny laparoscopic incisions, and one long incision from the belly button down my abdomen. I had stitches and Steri-Strips on the wound.
I am now nearly 4 weeks post-op and doing pretty well. I had a little bit of cellulitis, a skin infection near the long incision but that is also clearing up with just antibiotics.
Recovery the first 2 days post-op was tough. Getting in and out of bed was difficult even with help. My lower abdomen was sore, it felt like I did a hundred crunches. But time flew by and now I am walking around much more, and able to drive myself too. After the hospital discharge, I only took Tylenol for maybe 3 days and then just an occasional Tylenol for when it felt a little bit more sore (usually on days when I overexerted myself).
If you are afraid of the surgery and the pain that comes with it, don't be. It was manageable with 325mg of Tylenol every 4 hours for a few days. As for "losing" a functioning body part, I think the surgeon would try to save as much of your healthy bowel as possible. Developing a fistula is really bad. I was "lucky" that mine connected to the colon and not to my bladder or some other non-bowel-related organ. Feces in other organs that are not meant to deal with that sort of waste can get infected or worse make you septic.
What state are you in? Maybe there is a big IBD center in your state. I am in NJ and lucky to be near NYC.
I definitely felt more at peace with my decision to have the surgery after visiting the IBD center in NYC. Now let's just hope that my anastomosis heals nicely and that my Crohn's stays away.
I'm sorry my post is so long... If you have any questions, feel free to contact me. :)
Good luck!