Postby CaliforniaBagMan » Thu Dec 28, 2017 12:34 pm
The most important thing is to realize *you* must be the quarterback on where this gets marked. You take input from others, then make decisions. Sorry if that sounds obvious but it is important.
I went for stoma marking only doing an average amount of research. So the nurse did marking, using a tattoo which I found painful and not necessary. Others had external markings with a felt pen only.
After I was marked, I had my surgeon look at it and he said: "no way." He knew my body and what was likely to be expected during surgery. He said where the nurse marked was no good. Agghh.
I did not do any testing while wearing ostomy applicances before being marked. Neither for the first or second marking. I should have done that, but oh well. Things mostly worked out OK, but not ideal. For good results you must try wearing an appliance with some contents in it.
I would get some two-piece appliance systems, with a separate "flange" or "wafer" that attaches to you, and a pouch that snaps onto that. I use Hollister 14704 flange, and Hollister 18392 pouch. If time is short, a pharmacy in your local area likely stocks them, or equivalents. If you can't get them locally, PM me (although I am rarely on here.)
Install the flange in a "diamond shape." Most new users apply it like a picture frame, with sides straight up and down. Experienced users use a diamond shape, with sides at a diagonal. Cut or shave the hair from your skin (if any!) before applying the flange. After the flange is secure to your skin, get the pouch ready. Fill it modestly with 1/4 or 1/3 full of applesauce. Don't overdo it, as most people change a pouch before it gets too full. (Later, for fun, make it really full, re-apply, get dressed, and see how unwieldy that can get .....) (Try rolling over in bed with a mostly full pouch just for fun ... but maybe put plastic down first!!!)
Now get dressed, with normal clothing and maybe try tight fitting clothing which is the most problematic. Be sure to wear a belt. Go sit in some chairs, bend over to pick items up off the floor, get in your car and put on the seat belt, try lifting and carrying a large heavy package, etc. Look for conflicts where the contents gets squeezed or moves around, or a belt or seat belt crosses the area of the opening. Those are best avoided, by locating the flange up/down/to the side. If the contents are getting squeezed, etc., this is at some point going to cause a leak. Ostomy veterans due everything possible to not have a leak. For obvious reasons.
You might consider having your surgeon mark a large area where an opening can be created. Then do your testing. Then tell your stoma marking person where to mark.
Finally, remove the pouch that has contents. Now apply a completely empty pouch. Do all the same things with clothing and tests. Notice how different and simpler things are when there are no contents in the pouch. Ten years into this, I almost never accept having any contents in the pouch. In the early days, I paid out-of-pocket for so many excess supplies that I could change things whenever I wanted to with no worry of running out. And, I started doing irrigation.
It's too early now for irrigation, but I would definitely recommend looking into that after a post-surgery interval. For me, each morning I infuse a bag of warm water into my colon. That stimulates *everything* to come out. At least mostly everything. It's not 100% foolproof but maybe 95%. When it works as it should, you have one bathroom visit (maybe an hour) per day, then an empty pouch the rest of the day and night. Very convenient.
You will also find that dealing with "gas" can cause unexpected issues. Like being in a quiet room with others, and having gas come out. It's not as controllable as before. Diet and irrigation can work wonders to reduce the ..... surprises.
Another suggestion is to ask your surgeon *not* to create a flush stoma. You want at least a slight protrusion outside your body; otherwise, you will constantly fight skin irritation and regret it. (Ask me how I know!) It's not a huge deal, and it can be handled, but it's better *not* to have to deal with that at all.
Lastly, be prepared for some anguish at first. In the beginning, some things seem weird and abnormal. It's not a huge deal, just something new and different. And sometimes smelly. And there will be leaks and accidents. Try to keep the perspective that the early days are the "learning curve." At some point you will transition to be a veteran that is comfortable with all aspects of this. For many of us, an ostomy either saved a life or transitioned from poor bowel control to a more manageable life. My experience with all of this has been positive-- it's a new normal, and things work smoothly once you get over the opening jitters and concerns.
CT guided biopsy on mass - still NED !!!
CT scan finds new 2x3cm mass on 10/09
APR surgery 11/07; NED thereafter
Folfox/radiation 9/07-10/07
DX Stage III rectal cancer 7/07