I promised you all I would come back and update you as things progressed. But things didn't go as expected so it's taken me awhile to get back here. My orginal surgery was Oct. 2nd. I had my entire rectum removed and a temp. ileostomy put in place. They removed 14 lymph nodes with 5 coming back as positive. So turns out I had stage 3 rectal cancer to my and my docs surprise.
The surgery wasn't nearly as bad as I had expected.. other than the pain I had for the first 24 hours. It was bad... but after 3 days recovery things got better pretty quickly. I came home on the 8th day only because I had problems getting my bladder to work. I ended up going home with the catherter and wore it for 2 weeks before things finally started to wake up.
Then a few days later I began with severe spasms and pain. My stomach became very distended. I kept taking pain meds and nothing worked. My ileostomy completely stopped putting out. At that time I really had no idea that I could have a blockage. I just keep thinking it would pass. After 10 hours at 2 am my husband called my surgeon. He said get her to the emerg. room asap. He said if she starts vomiting it is no doubt a blockage. By the time I got to the hosp. I was vomiting. They admited me imed. The next morning they did xrays which didn't show an exact blockage, it just showed my small intestines where very dialated. They tried for hours to get my pain under control. My doc told us he was very concerned and reluctant to do surgery. He said 2 weeks post op was the absolute worst time to go back in. He said everything would be a huge sticky mess. Basically like a huge mound of stickly spaghetti and if he went in and tried to unravel the mess it may break and cause more serious problems. He said he felt my life would be more at risk by doing surgery at that time. He said he they could get my pain under control we would try waiting it out to see if it would clear on it's on. He said if we could buy more time even 1 week I would have a much better prognosis. So we waited and after 4 days it started to clear a bit but not completely. They put me on TPN feeding me through and IV. They kept me in the hosp. for 2 weeks. He finally decided we had things under control and I could go home with the TPN 24/7 and try to wait it out as long as we could before doing another surgery. He felt if we could make it to 8 weeks everything would be healed up and I would have less complications... so the plan was go home and wait..... no food except for the TPN.
But a week later I blocked up completely again. I didn't want to go to the hosp. cause I didn't feel they would do surgery... only give me pain meds and wait. I wanted to wait it out at home. YES, I now know that was very risky. The pain was unbearable and I do no know how I got through it. It was worse than labor pains... constant spasms and contractions. I looked 5 months pregnant.
I called the doc the next day... it had happened in the middle of the night again. He wanted me to come in for xrays and to talk about a surgery date. He had set it the week before for the Tues. after Thanksgiving. (tomorrow) But after the latest incidence he felt we could no longer put it off. So on Nov. 15th he went in and removed two adhesions and a kink in my small intestines. One good thing came out of it... he was also able to reverse my ileostomy which was not planned to be done until this spring after my 2nd round of chemo. I came home Friday the day after Thanksgiving.
I have to tell you, this second surgery cannot even be compared to the first. The pain was and still is unbelievable. It was SO much worse than the first surgery. I'm not sure it if was because it was only 6 weeks after my first surgery and I had still not recovered or what. My pain is better today but I am now dealing with questions about my BM's. Doc is supposed to be calling me back this afternoon. I don't know why but I expected my BMs to be mostly diarhea and they aren't. I just get small little pieces and I keep feeling like I have to go. I've been 5 or 6 times today with just these little pieces of soft stool. I thought over the weekend I was constipated... I felt bloated and like I needed to go but couldn't. I think it's probably normal since I have no rectum and my colon just doesnt' know what to do with this. They also were not able to do the J pouch on me so I have no holding tank.
My doc told me to stay on a low residue diet and I am but I keep wondering should I be eating mild foods? My appetite has just started to pick up and I am craving like a big hamburger. :) but wonder would that be a good idea?
I am having a REALLY hard time with my emotions. I cry at the drop of a hat. and feel sooooo sad all the time. My incision is much larger and uglier than I expected, especially the ostomy scar. I have what looks like a hernia between the two scars and doc says that's just because of the pull of two scars in different directions. He didn't give me much hope for it looking any better.
I figure part of my emotions are due to my ovaries being fried during radiation. I called my oncologist today to see if they could give me something for my depression. I am already on Wellbutrin and have been for 5 years. They pass the buck and say call the doc that prescribed that and see if they need to change it. OH THANKS! I haven't seen that psychiatrist in years. Don't even remember her name. My regular physician has been refilling it for me for the last 4 years. And I don't feel he is qualified to help me with this. So where do I go from here? Anyone else dealt with these emotional issues and found something to help?? I a driving myself crazy an so tired of crying. I feel so much doom and gloom. I know I have so much to be happy about and thankful for..... BUT..................
I'm going read some of your posts and catch up with whats going on in your world. If anyone has any questions about all of this please don't hesitate to ask. I remember when I was first diagnosed I was so scared and had so many questions. I have a lot of answers now as I am sure there are many of you who have been through it all and can maybe help me with mine.
THANKS for listening!
Anita