The Colon Club

Hello friends
I have an upcoming Stoma Marking appointment to prepare for my permanent colostomy.

Surgery date January 2018 at UCSF

What questions should I ask my surgical team? What do you wish you had known earlier or asked about sooner? I really appreciate any tips or experiences you can share.

Thank you
Beth D

Figure out where your clothes' waistbands are! DH had an emergency stoma after a leak and unfortunately it's right where he wears his belt. So now he hikes up his pants above that and says he feels like a caricature of an old man. Sweats are more comfortable for him but he's not a fan of the style.

Where do you bend? How do you like to sit? Where does your car seat belt hit? Can they put a pouch on you now to see if that site works when sitting?

When they review pouching systems, check out all the brands/styles. What he went home with from the hospital didn't work well for him so we experimented.

Best wishes! M

mhf1986 wrote:Figure out where your clothes' waistbands are!

She is right on the money! I would honestly suggest you take in a few clothing items to try and see. When we were marking for mine we had a few spots I was deciding between and I wish I had chosen mine about a half inch lower because I too feel like the waistline of many of my clothes tends to fall right where the ostomy is. It’s not catastrophic, I have worked around it ok, but that half an inch would have made it just a tad easier/more convenient. Also, tape one on to you at that appointment so you also get a feel for how low it may hang as you may want the ostomy to sit higher if you don’t want the pouch to fall so low it bothers you how it touches your groin area in general. One other thought, keep in mind the distance from your bellybutton as the wafer itself is wider so you want the edge of the wafer to not hit the crease area by your belly button and potentially compromise the seal it maintains with your abdomen. And like M said, these pouches come in all sorts of sizes and varieties and each have their own unique feel on your body so experiment if what they give you at the hospital is not working for you. Although I do know of people who stick with what they got from the hospital because it worked and they were satisfied. And less is more, don’t over complicate what all you may need for your pouch to adhere. Good luck with both your surgery and the colostomy!

I also agree: location, location, location! And find out how to get samples so you can try out different brands and styles. I wished I had been warned more about hernias; I would have purchased a lift chair sooner.

Mostly don't worry about the ostomy. For me it is no big deal and doesn't limit me one bit. I can travel, exercise, swim...no limits, and no worrying about bathrooms!

I have an ileostomy but location is important. I have to wear larger pants because the waistband is pushed lower by the pouching system so pants look a little saggy.

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.

I got a colostomy because of blockage three weeks ago and the surgeon made the mark in a hurry with me sitting on the bed. Still it was a good plan, the only thing is that I have to cut the adhesive part of the bag that is covering the surgery scar. The colostomy is no problem for me to have. It is still temporary but, after trying it, the permanent option does not scare me anymore.

Claudia

Atoq wrote:I got a colostomy because of blockage three weeks ago and the surgeon made the mark in a hurry with me sitting on the bed. Still it was a good plan, the only thing is that I have to cut the adhesive part of the bag that is covering the surgery scar. The colostomy is no problem for me to have. It is still temporary but, after trying it, the permanent option does not scare me anymore.

Claudia

I had the issue of the wafer tape covering the bandage on the scar. So I used bandaids to cover the scar and put the wafer tape over the bandaids. That did work but I had to change the bandaids every time I changed the bag. Fortunately it was okay after a few weeks. The wafer itself would be a different story I think.

The immediate post-surgery time is a challenge.

Surrounding tissue is wounded, and you need to adhere to it, or very close. The band-aid approach seems good. I just gritted through with the wafer only, wish I had thought of the band-aid.

Once you are past the wounded tissue, another trick is to heat the wafer with a blow dryer before applying. It can make the difference between a so-so seal and a good one. But not probably something to do immediately post-surgery. You kind of want a minimal adhesion near the wounded tissue.

I like the idea of "wearing" a bag filled with applesauce to give you a better idea of what to expect!

Everyone is different when it comes to bag choices/clothing. I am a big fan of ostomy secrets wraps because I am very active and don't like the bag swinging back and forth, and don't want to worry about the bag getting snagged. I do like a layer of fabric between my skin and the bag (again I am very active and live in a hot and humid climate; just feels better).

Wearing the bag "diamond" or "picture frame" is a matter of personal preference. I much prefer "picture frame" personally but do like to mix it up a bit. And although this probably doesn't apply to you...if you have a hairy torso, definitely ask about laser hair removal. My insurance actually pays for it (with prior approval), it is quick and virtually painless, and has increased my wear time from 1-2 days to a week or more. And no more shaving (you would definitely need to wait at least 6 weeks before any treatments however).

Make sure you remember to chew chew chew and hydrate hydrate hydrate. At this point I can eat almost anything, although I avoid starchy foods (constipating) and gas producing foods (just makes life easier).

I tried irrigation but found it way more time consuming than just emptying the bag as needed (1-2 times a day, takes me a total of less than 5 minutes vs 30-60 minutes for irrigation) but you should definitely give it a try...many people swear by it!

I found this article which I thought was interesting about how to avoid hernia and prepare for surgery:

http://www.stomadata.com/Minimising_the ... Hernia.pdf

Claudia

Beth I'm sort I'm of no help in this regard but can I please ask why u have to have a permanent colostomy???
I seem to have similar stage Rectal cancer 2.5/3 cm AV, And still hopful of the resection and connection again afterwards
Thanks Adele

Hi Adele
I'm still coming around to the idea. I had initially hoped to avoid surgery altogether, and planned on having a resection connection.

I've done chemo and radiation with the intention to shrink my tumor enough to give my surgeon a bit more margin to work with. The tumor did shrink quite a bit, but I guess I still don't have enough margin.

My surgeon thinks my quality of life will be better and I'll avoid years of diapers if I go for the permanent colostomy.

talk to you soon
Beth

Thanks for ur reply Beth, in n the same position,,, starting radiation tomorrow, well today now as its 4.15 am lol,
I think I'm willing to take the chance if it shrinks and if it doesn't work then I'll go for the other at a, later stage
I will have a temp one anyway for 6 months while the resection heals and prob finish off adjuvant chemo
Adele

BethD wrote:Hi Adele
My surgeon thinks my quality of life will be better and I'll avoid years of diapers if I go for the permanent colostomy.
talk to you soon
Beth

Your surgeon is probably right. Am I correct to assume surgeon is a board certified colon rectal surgeon. They have the extra training for this type of surgery (rectal).

I have a permanent stoma, and it has not held me back. If anything it gave me my life back. Radiation destroyed 2/3 of my rectal muscles thus I was tied to toilet for hours anytime I ate. Only solution was to wait until I was home for day before eating anything. Surgeon was willing to take muscles from some other part of my body, train them for 2 yrs. Goals was to get to 3 BM a day, butt could be living with 20+ BM a day. Gee I was already there. Surgeon had me see a Ostomy nurse and that is when I learned about a colostomy. I went into my surgery knowing I would have a permanent colostomy. My decision.

There are many people out there who have these colostomy and you would never know it. Many are famous people. There are many reasons for getting a colostomy. For many people, bowel issues have negatively effect their lives (not just cancer), getting a colostomy gave them their lives back. There have been a few people through the years here who had the reversal only to turn around and get their colostomy back simply because of multiple bathroom issues.

Me, I can be out all day and not worry where the nearest bathroom is. I can eat what I want and not worry how certain foods will effect my bowels. I've played in the ocean for many years with my bag and have gone horse riding with out problems. When my kids were younger, I was the mom that went on the field trips.

There is another site you might want to check out. They are a lot like us, The United Ostomy Assocaition of America. Click on the link below to get you there.

https://www.uoaa.org/forum/index.php?si ... 0ef660f3f0

If you have any questions, let me know. I am more than happy to answer them.

Good luck,

Lee