Apr 12, 2014 at 6:44 pm #1315594
I still in the hospital after the removal of a large tumor that required the addition of a colostomy. Anyone have suggestions, tips, or cautions to take so I can continue hiking?
Thanks!Apr 12, 2014 at 7:13 pm #2092389
@eagleriverdeeLocale: Eagle River, Alaska
I don't have advice, but wanted to give you a nod of respect. That is all. I hope someone with some experience in this area chimes in.Apr 12, 2014 at 8:09 pm #2092405
@cfrey-0Locale: US East Coast
I have been indirectly dealing with this with a family member since December. He lost his entire ascending colon and now has an end illeostomy.
Biggest thing you need to know in the early stage is you will get used to it. It is not as life altering as you most likely think right now. The gross factor goes away pretty fast. Lots of good info online of active people enjoying active lives, including a guy who likes to wake-board!!!
Some things will obviously be different but nothing that should keep you off trail. A couple things I can think of: Depending on the location of your resection you will probably need to plan on carrying and drinking A LOT more water than before; You'll need to be acutely conscious of output as GI issues (diarrhea for example) will not be as immediately obvious; flatulence can be a big issue, so you'll need to factor out any foods that give you gas. We were also told to avoid straws because apparently they encourage the intake of air into the GI tract, so hydration bladders/tubes may be out if the principal holds.
Best luck with recovery. It can be a slog, particularly if you need additional treatment for the tumor, but there is an end and you can get there!Apr 12, 2014 at 11:32 pm #2092424
@davidinkenaiLocale: North Woods. Far North.
Like Christopher said, things will be different, but you'll learn to dance (and hike) with those differences. I had a coworker with pretty bad Crohn's disease and had some of his intestine resected. He needed to be pretty close to the "facilities" at all times, but really that meant that he always drove a minivan, never a sedan. But he traveled, did field work, and didn't let it limit him.
Your diet and the timing of your meals may make a difference. Remember it all or keep records so you can dial in what works best for you. I know an insulin-dependent dog musher who has completed the Iditarod Race (3 weeks and 1,049 miles of un-supported camping in remote wilderness conditions). Edited to add: with an external insulin pump. Yeah, it requires more awareness and planning, but it is doable.
Great post by Randy (below) !Apr 13, 2014 at 1:20 am #2092426
@highsierraguyLocale: Northern California
The first thing that comes to mind, is the placement of the osotomy in relation to the hipbelt of your back. I would think you would not want the pressure of the hipbelt directly over the osotomy. If that is an issue, you may need to think of other ways of packing your gear. Possibly one of those large hip/ lower back/ fanny packs with the suspender type straps?Apr 13, 2014 at 2:25 pm #2092593
A friend of ours had much of his urinary tract removed due to cancer and had a stoma created which attached to a bag for urine output. His main issue with backpacking ended up being how to have the bag lower than the drain site while sleeping, so that the gravity flow would work. He considered buying a Luxurylite cot, but ended up just finding a sloping site to sleep on and placing the bag lower on the slope. Other than that, he always had to bring extra bags in case the seal failed while out on a trip.Apr 14, 2014 at 12:55 pm #2092898
@bagboyLocale: Palmdale, CA
I had my entire large intestine removed 14 years ago, so I have an ileostomy. My stoma was placed nice and low at my request, and as a result it doesn’t interfere with a climbing harness or backpack hip belt. During those 14 years, I’ve done martial arts, running, climbing, crawling around in caves, rappelling and ascending ropes in caves/cliffs, and obviously backpacking. My ostomy doesn’t slow me down at all. A major function of the colon is to reabsorb water. I lost ALL of that function and consequently poop nothing but liquid. You still may have the majority of that function intact since you have a portion of your colon remaining, although I’m not sure how much you still have. If your stool is fairly formed, then you’re not losing near as much in the way of fluid and won’t require as much diligence in staying hydrated.
For backpacking you’ll need to have already figured out how you will change your bag/flange since the bathroom sink, countertop, etc won’t be there, and you'll have to determine what supplies to take along. I’ve yet to have to change the flange on a trip, but I’ve had to change the bag a couple times. You’ll have to figure out over time how frequently you typically need to change these, because it varies widely between individuals, and this will factor into how much supplies to take on a trip. I can sometimes go a week or more before needing to change mine, but most can’t do that. As mentioned previously, the hip belt placement may be an issue. If you solve that riddle, I’d recommend doing some shorter day hikes with a fully-loaded pack before venturing out too far, because you need to figure out if your hip belt is doing anything to compromise the adhesive on your flange. It does NOT on mine, but then again, my stoma placement is probably lower than yours.
It’s normal to have a gazillion questions post-op, so feel free to PM me ;)Apr 15, 2014 at 9:16 am #2093179
I have nothing to add other than this has been an interesting view into the human spirit and greatly appreciate those who shared their stories.Apr 15, 2014 at 6:19 pm #2093430
Thanks everyone for the advise and insight.
I just got home from the hospital after a 2 week stay. Ended up rougher than expected but still alive after a close call.
It will help me now as I review my gear and fit. My stoma if fairly high on my left but the ostomy nurse said I can place the bag at an angle that will give me more clearance for the hip belt. It will be a while before I get back on the trail for a few day hikes before an overnighter. I was able to get out for an overnighter after the last similar surgery 3 years ago after 7 weeks but they didn't have to put in the ostomy then. Planning for a trip is a great motivator for me to take care of myself.
Thanks again all!
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