What you wish you knew before...

[DaveM]

Hi all,

I am scheduled for a proctectomy and colostomy in about a month for treatment of rectal cancer. It’s a big surgery and is definitely weighing heavy on my mind.

For those that have had this done or similar, what are some of the things you wish someone had told you beforehand?

Where there any items or aids you found to be helpful or indispensable for recovery?

Any advice is appreciated!

Thanks

[To Dream a Dream]

Thanks for joining our board, Dave. What I have found to be indispensable is a solid support system including both those professionals among the medical field & your own significant others. Finding a reliable ostomy nurse with whom you can speak with pre-op is a necessity. Contact with a surgical nurse practitioner who can guide you thru the overall process is also helpful. If your surgeon's team does not already include them, you might consider contacting the closest UOAA support group to ask about WOCNurses who may be in your general area. Having someone (relative, etc.) who will serve as a point person along with you may also be a plus.

Because this is a very important & unique experience, gaining an appreciation of the information available to help you beforehand is a good idea. (The UOAA website contains many links, etc.) This Discussion Board is a 24/7 connection to others who have suggestions & specific answers to your questions as they arise. Please remember that you are not alone.

Again, thanks for joining us. And please continue to keep in contact.

[ot dave]

Hi Dave,

Welcome to the boards! I had stage 3 rectal cancer. The tumor was low enough that I had to have a total APR with a permanent colostomy. I guess that I was lucky in the fact that I have a medical background as I am an occupational therapist. So, I knew what was happening and why it needed to be done. There will be a lot that you will need to learn, but the good news is, you don't have to learn it all at once. This will be a marathon, not a sprint....the learning, and the recovery.
Since my anus was removed, I really benefitted from a pillow...a soft pillow to sit on hard surfaces. Not a donut cushion, those will make you cry! I just used a throw pillow off of our couch, and it worked like a charm. Also bought a recliner to sleep in for the first few weeks because laying completely supine in bed was most uncomfortable and difficult to get up from in the mornings.
Stay connected here. You get tips and suggestions for EVERYTHING! Good tips and suggestions. Some will work, some won't, but you'll be able to figure out what works for you over time. Once you get healed up, check out the irrigation forum. With a colostomy, you'll be able to irrigate. It's not perfect, but it does give you some control back once you get it figured out. I irrigate every morning and consistently get 24 hours output free.
Plan on some depression. It affects some more than others. You might need counseling, you might need meds, you might need time, you might need all 3! For me, it was a "come to Jesus meeting" with my wife who reminded me that she wasn't going to raise our kids by herself when I was given the gift of beating cancer!
Hope that helps get you started. Again, come back with any questions, anytime.

David

[DaveM]

Thank you for the warm welcome and great advice.

I’m not too worried about the medical aspects of the procedure. I understand the whys and what fors. I’ve always known in the back of my mind since diagnosis that It was very likely to go this way. I’m actually a bit relieved that I won’t have to deal with any LAR syndrome or reconnection difficulties. I’ve had three other surgeries and a few liver ablations in the last two years, so it’s becoming routine.

I definitely want to get prepared with all the right “equipment” to help keep me comfortable during recovery. I’ve found surgeons are amazing at omitting details of how much recovery from their surgeries can suck. Lol.

I also am lucky to have a best friend that underwent a complete colectomy last year due to Crohns. I don’t think I could ask for a better Ostomy buddy.

Keep all the tips coming!

[BillV]

One of the saddest things I have learned about is contained in posts by people who have learned things after having a major surgery that would have affected the choice that they needed to make. While I did my homework that enabled me to make the choice that was best for me, this is often not the case for others. To address this, I wrote an article entitled, Researching My Options” that was published in an issue of The Phoenix magazine and reprinted with their permission in the Quality Life Association web page where it can be viewed by anyone visiting that site. The direct link to the article is:
https://j7d.873.myftpupload.com/wp-cont ... ions-1.pdf.

Although this article centers on continent ileostomies (those that do not require having an outside bag), you might find it helpful in directing your search. Perhaps you could be a candidate for one of these procedures. Best of luck with your research and upcoming surgery.

[nickolas]

I'm a 16 yr survivor of stage IIIC rectal cancer. I'm like Dave, I had an APR with a permanent colostomy. Radiation had destroyed most of my rectal muscles and I was tied to the toilet for hours if I ate anything. Getting the bag gave me my life back. It was my decision and I have no regrets.

Get a wrap around robe and bring to hospital. All the hospital with provide you will be a gown with the back end open. A wrap around robe is easy to get in and out of especially when hooked up to IV's and you will be doing a lot of walking. Also have some good comfortable slippers. Walking the hospital hall really does help with the healing process, so be sure to walk, walk, walk. In the beginning it will be rough, pain wise, but I found the more I walked, the less painful it was.

Good luck,

nickolas

[ron in mich.]

Hi Dave maybe go to youtube and look at videos of colostomys and maybe pick up some handy tips.

[steiconi]

I got this pillow, it worked great. Looks like it's out of stock at walmart, but it's available elsewhere. https://www.walmart.com/ip/seort/17351082

You can bring a robe to the hospital, or just ask for a second gown. Wear it with the opening in front, over the gown that opens in back. Having personal clothing can make you feel more normal, but if it gets stained with food, blood, or other messies, it'll have to go home to get washed. And you may never feel the same about "that robe I wore in the hospital" again.
Some hospitals also provide alternatives to wearing a gown; my favorite option was drawstring shorts and a loose shirt.

And now the horror story. I have the impression that my experience was far from typical, but it may help you identify potential issues:

After years of problems and several surgeries, I had an APR two years ago. It was a good choice, and it's working out well, but, man, did I have complications!

1) an increase in pain may indicate a problem. In my case, the pain was from abscesses; the APR "seam" burst open from the pressure, leaving me in a puddle of blood.

2) doctors recommend what usually works, but might not for you. The doc suggested drains in the abscesses instead of another surgery, and warned me I might have them for "a few weeks".
In fact, it was much longer. Two drains finished up and were removed between 6 and 9 weeks (I'd call that several weeks). The third kept going; after 3 months, doc suggested we remove it and see what happened. Ugh. Two days later, the APR seam burst again.
The drains involved suction bulbs the size of my fist hanging off tubes sprouting from my belly and butt. Sometimes they hurt, and clothing options were limited. I drained and flushed them twice a day, and had to spend half a day at the hospital to have them "serviced" every 2-3 weeks.

3) doctors think you're just fussing, and ignore what you have to say. I kept telling them the fluid in the third drain looked infected; murky and with blobs of whitish stuff. They said that was normal. After the second time the APR burst, they finally checked for infection (yup, positive), and put me on IV antibiotics -- I had to go to the hospital daily for a month. Finally the last drain could be removed, and I got the heck out of Minnesota.

My takeaway from this experience is that you have to stand up for yourself. Having a medical degree might help, too.

[nickolas]

You can bring a robe to the hospital, or just ask for a second gown. Wear it with the opening in front, over the gown that opens in back.
Some hospitals also provide alternatives to wearing a gown; my favorite option was drawstring shorts and a loose shirt.

I was told upfront that I would not be getting a 2nd gown. The reason being that the 2nd gown made it more difficult getting in and out of the hospital bed, more painful with the type of surgery that I had. Maybe they have changed that rule. Many people walked those hall with an open back end. As the saying goes, "you leave your modesty at the front when you enter the hospital and pick it up on the way out".

nickolas

[DaveM]

Yeah, I’ll walk naked down the halls, lol. The nurses can worry about covering me up.

Just kidding. I’d at least let them get me squared away first. I’ve had top notch and very compassionate care for the three surgeries I’ve had so far.

[SeaQuest]

The item that most helped me after surgery was a body-pillow. Pre-surgery, I slept on my stomach my entire life. Post-surgery, that was no longer an option as I couldn't get comfortable in bed fearing that I'd roll onto my stomach. My wife asked me to try a body-pillow, and it works great. I lean into it as I prepare to sleep, and it provides support through the night. I was very skeptical of the idea upfront as I had never used a pillow; I still don't sleep with the traditional one under my head, but I won't sleep at all without my body-pillow.

The other bit of advice is to contact each of the manufacurers of supplies and ask them for samples of their products; they will gladly send these to you. The hospital will obviously supply these while in the hospital and will send you home with additional supplies; however, there are several different manufacturers who make many different products; some work better than others. The bag i was given at the hospital had an extremely stiff adhesive portion - it was most uncomfortable and was almost like having a small license plate on my abdomen. Once you get the supplies, try them all, and see what works best; the answer is not always the same for each person. The most recent listing of manufacturers I can find on the board is located at: viewtopic.php?f=2&t=27099&p=227416&hili ... es#p227416.

Best of luck!

SeaQuest