Postby Soccermom2boys » Thu Jun 23, 2016 8:31 pm
Count me in the APR club! Yeah, it's by no means what anyone wants to have, but I am six months out and doing fairly well. Just went to the pool for the first time yesterday with the colostomy pouch--was a big mental milestone for me that no one else would know about. Every time you hit a milestone like that it helps build your confidence that life with a permanent colostomy can be fairly close to what it was before f-ing cancer showed up. As for the APR surgery, I would say it was really not so bad as far as pain goes. I only needed the narcotic (delauded?) for about 48 hrs after the surgery and by the time I went home (5 night stay at hospital) I only used extra strength Tylenol and I barely even used that. I was just more relieved to get the surgery behind me and to get the tumor out of me that I honestly wasn't even thinking about what could happen during the surgery. I will say they dope you up good and that really helps you as they wheel you down to the operating room. If you feel good about your surgeon going in to it then keep that faith and you will be fine. I am sure you did all that you could going in to the surgery to be healthy and strong so just let the doctor do the rest and you will be surprised with how much "easier" it is than what you are probably envisioning I am guessing. Two things I was clueless about regarding after the surgery-you will have an NG tube down through your nose into your esophagus which is majorly annoying, but bearable. You can't eat or drink (not even water) until they take the tube out and the tube comes out once they know gas is passing through your colon-for me that was about 48 hrs after surgery. The other piece I was clueless about was that I had two JP drains (bulbs with tubing) to the right of my incision that were not painful, but I went home with one in for another week or two to help drain out any extra fluid/blood and help with the overall healing. Annoying, but you will be at home recovering so not like you'll be dealing with a drain while you are out on the dance floor! As for the recovery, by six weeks you feel somewhat back to normal and by 8 weeks definitely notice a difference. If you work, try to take off a full eight weeks for recovery--you won't want or really be able to sit like normal for at least six weeks afterwards. I literally would crawl out of bed each morning and measure up how I felt from one day to the next and fortunately each day was ever so slightly better than the one before it.
I did not have a fistula so I can't help you with that as far as what to expect. The days will feel long for sure during recovery as you will be limited to what you can do, but walking was a great way for me to get out of the house and work on my recovery and feel better about myself. By a month out I was easily getting six to eight miles of walking in a day--not all at once, but I would make walking dates with friends and my husband when he came home from work and that was such a great way for me to start getting back my life piece by piece.
By all means, you can send me a PM if you have any questions and/or want to know some nitty gritty details-I am more than happy to help out a fellow ostomate! Also, definitely check out the United Ostomate Association of America's forum as well at UOAA.org. Such an amazing group of kind and helpful ostomates who are able to help you with issues that will arise as you deal with life with an Ostomy. Best of luck with the surgery--truly, you will be fine and most likely surprised at how well you weather it! You will be in my thoughts!
8/3/15 Went in with a hemorrhoid, came out with a tumor
8/12/15 Biopsy from colonoscopy confirms RC (45 yrs old--zero family history!)
9/21 - 10/29/15 chemorad 28 tx (with Xeloda)
12/17/15 APR with perm colostomy
Pathology report stages me as IIIA (T2N1M0)--1/15 LN detects cancer
2/3/16 chemo port inserted
2/8-6/2/16 8 rounds of Folfox