Hi everyone,
Long time lurker here and I'll apologize in advance for not having a signature. Wife is Stage IV CC with mets to liver and spread to abdomen. She's 52 and has been in the fight for 13 months now. Things were going well late last year and doctors had the cancer under control. Wife decided to get her Ileostomy reversed. Her oncologist supported the decision, feeling that a break in chemo would not be too detrimental IF things went smoothly. He was about ready to move her to maintenance chemo. Her colorectal surgeon was a little more cautious, saying that any surgery is a risk and asked if she really wanted to do this. Bottom line was that the ostomy never agreed with her and she could not wait to get rid of it.
Anyways, had the surgery in mid January and initially everything went well. Bowel function returned immediately and she was home in four days and feeling pretty good. She was walking on the treadmill about a week later. We were thankful that FINALLY something in this miserable ordeal had gone well. We spoke too soon. Three weeks after the reversal, she came down with severe pain and had to go back to the hospital. They identified infection at the repair site and an abscess. Treatment was placement of two abdominal drains to address the fluid from the infection and the abscess and she was given antibiotics. The infection caused an ileus and she was very distended again. I should note that the surgeon eyeballed cancer spread to the wall of the abdomen and on the outside of the large colon during the procedure and likened it to grass seed, saying that a CT Scan would not pick up on this. She was in the hospital for a couple weeks and was finally sent home on TPN because the ileus still wasn't rectified. One of the abdominal drains was left in to address the remaining fluid.
At the next follow up visit to check on the drain, the interventional radiology doctor said that the drain had been left in too long and caused a fistula and now stool was draining. We are several weeks into this latest challenge and the fistula still has not closed up. The bigger issue is that my wife is constantly in severe pain, which the oncologist is treating with a great deal of dilaudid. She is back on chemo as of four weeks ago, with the onc saying that it's not an ideal time to do this, but we really don't have much of a choice. She is two rounds in already and her CEA has had an immediate drop. That is the one bit of good news we've had in all this. However, her ileus continues and she literally cannot take a bite of solid food without feeling horrible. Besides the severe abdominal pain, she is also having severe nausea and the anti-nausea meds aren't really helping too much. The surgeon is blaming everything on the cancer, saying that she will get relief from the pain when the chemo knocks the cancer back and also when the fistula is closed and the drain is removed. The oncologist doesn't disagree with this, but quite frankly seems a little puzzled by her pain and ileus. Thank God for the TPN or else she would have wasted away to nothing by now.
Sorry to ramble, but we are in a bad spot and wondering if she will ever feel well again. I'm happy to provide more information, but my main question is, is there anything that we might be missing? She gets scanned every four weeks to check on the fistula and those are showing that the bowel is less swollen and that there aren't any new tumors. This is very frustrating because even though she hated the Ileostomy, she actually was feeling pretty good and eating a normal diet. She was even back in spin classes and doing some stuff with her personal trainer. Now just taking a shower or walking down the stairs is a real challenge and she hasn't enjoyed solid food in weeks.
For those of you who are going through this or have gone through it, God Bless you. Any suggestions or input would be helpful.