Colostomy? Recovery time?

[funklab]

My bowels have been giving me shit (apologies for the pun) for the last several weeks. I?m really having trouble getting it under control and am more strongly considering a colostomy.

This morning I sent my physiatrist a message to set up an appointment to discuss a colostomy as a possible option.

Pretty much everyone I?ve heard from on this forum who?s had nos songs the praises of it, so I?m not worried about living with a colostomy, it seems like I?m likely to get several hours of my time back every week that I now spend sitting on the toilet. I am a tad worried about the recovery time.

for this of you who have had a colostomy or been around people who have had it done:

How long until you were back at home and independent?
How frequent were accidents/blowouts when you were freshly cut?

I work 40-50 hours a week and soon I will start doing shift work and not be able to maintain a consistent schedule (might work nights for a couple days then days then afternoons then every other morning, etc, constantly changing). And at my new job which I will start in August I absolutely cannot go home under any circumstances before my shift ends. If I shit myself or have a blowout or get stabbed in the neck I still have to wait for the next guy or gal to arrive before I can go stem the bleeding from my carotid or clean myself up....

also i only have 10 days of vacation and no sick days with which to perform this operation if I decide to go forward with it now before I move to my new job (which I would prefer).

im a reasonably healthy, skinny T8ish complete 12 years post injury in my mid thirties if that helps guide your suggestions and advice.


Do you guys think it?s possible to be fully sorted out and back to a normal life (driving, lifting chair over my body, working 8 hour shifts at a desk, grocery shoppinng, etc) within a week or so?

im a hard headed guy so whether or not it?s possible I?ll push myself to do it and damn the consequences (so I?m trying to determine ahead of time if I need to wait for a time in my life where I have more time off I can use).

thanks in advance for all your helpful comments.

[SCI-Nurse]

A lot depends on where the colostomy will be done (descending, transverse, or ascending colon), and if the procedure will be done with traditional surgery or with a laparoscopic procedure. Recovery from the latter is much shorter of course. With a traditional surgical procedure, requiring cutting through abdominal muscles, you will also be restricted from heavy lifting for much longer than with a laparoscopic procedure. Generally they will want to see you produce stool through the ostomy prior to discharging you from the hospital, so hospitalization may vary from 48 hours to as long as a week.

Ideally, your surgeon should be a colorectal surgeon who has done a number of these procedures for people with SCI. There is no need to remove the terminal colon beyond the colostomy; this makes it a much bigger procedure with a much longer recovery, and is really only needed if that section of bowel is diseased (such as colon cancer).

In addition, you should meet with a good ostomy nurse (usually a CWOCN) prior to surgery, both to learn about proper management of the colostomy, learn about appliances (bags, etc.) and for the nurse to mark your abdomen for the location of the stoma. This should be done with you sitting in your wheelchair so that any skin folds can be evident, and so that it is in a location where you can reach it for necessary skin care and appliance management. This same ostomy nurse should be available to see you immediately after surgery, do your first appliance changes, and teach you how to do these, as well as find the right appliance for you for long term use. Ideally they should remain available for you for a number of months afterwards as well, as the stoma will change, and you may need a different appliance. They can also help you troubleshoot skin issues or reasons for appliance failure.

(KLD)

[beckman]

I had a sigmoid loop colostomy via laparoscope about 3 years ago. I was in the hospital for 5 days I believe but there was a weekend in there and I had to wait for a bowel movement and the surgeon’s OK on Monday. It took a few more days before the gas came out and stool became more normal. I was independant fairly quickly and probably could have been immediately on discharge and I'm a quad but the sight of the stoma initially made me nervous. The stoma shrunk fairly quickly over the following weeks. I met with the Ostomy nurses and they did all the things KLD recommended. They were very helpful.

One possible side affect I wasn’t aware of was diversion colitis which apparently doesn’t usually cause problems but can for some. I’ve recently been diagnosed with it and if you search this site there have been a few who have had a lot of problems.

[HockeyFan]

Similar experience to beckman. About five days total in the hospital, but much of it waiting for bowels to do their thing.

Big quality of life improvement. Be sure to have some appointments with an ostomy nurse so you can decide where to put the stoma (above or below your bellybutton line) and be sure to have them mark the spot before you go into surgery. Get samples from many providers and try out all kinds of bags/wafers. You never know what's going to work for you. There are also various belts and wraps (ostomysecrets, stealthbelt) that are helpful. I found the videos on this site to be helpful.

As far as work goes, create a small bag with some emergency supplies (e.g. bag, wafer, disposal bag, and some other supplies) and carry this in a messenger bag or backpack.

There are many people on the forum who've been through this, so post any questions as you go through the operation and get used to life with an ostomy.

Good luck!

[funklab]

Man, it sounds like I might not have enough vacation to get it done this year. Every appointment I go to I have to take a half day off of work.

It sounds like that's probably 1-2 days before surgery meeting with the surgeon and ostomy nurse to set things up, then five or so days in the hospital then multiple follow up visits. That's cutting it awful close to my ten day PTO limit. Anything goes wrong and I'm screwed and I could lose my job and thus my career... Maybe I'll just have to wait until I get my next job and try for it then. I just really wish I could get this bowel crap under control before then.

[funklab]

How expensive are the ostomy supplies?

I don't have a real good idea of how many bags/wafers/disposal bags, etc you go through in a month and no idea what they cost.

[SCI-Nurse]

How expensive are the ostomy supplies?

I don't have a real good idea of how many bags/wafers/disposal bags, etc you go through in a month and no idea what they cost.

Most insurances cover your ostomy supplies, and most follow the same guidelines as for Medicare coverage.
https://www.medicare.gov/coverage/ostomy-supplies

How many you need, and what they cost, will vary widely according to which product you use, whether you use a disposable bag or reusable bag system, and the features of your appliance. It also makes a difference depending on where on the colon your ostomy is made (more liquid, frequent stool for ascending colon, more formed, less frequent stool for descending, for example). Vented bags with a charcoal filter are great, but are going to cost significantly more than a non-vented, filter-less appliance. Your ostomy nurse will be able to guide you to the best products for your needs, and often have samples or coupons for getting supplies less expensively.

(KLD)

[vjls]

How expensive are the ostomy supplies?

I don't have a real good idea of how many bags/wafers/disposal bags, etc you go through in a month and no idea what they cost.

they expensive but medicare pays most me I use disposable bag those reuse able are gross I always take a couple of wafers and bags with me. and toilet paper I use plastice grocery bags to dispose of them

if I get really loose and afraid of I use a trash bag across my lap so if I have a accident change I don/t get it on me only ever had a couple of accidents where wafer came of we changed style and in 10 years never happen I am c6c7 quad I go thru ave 2 boxes wafer and now about 2 boxes bags

[pfcs49]

How expensive are the ostomy supplies?

I don't have a real good idea of how many bags/wafers/disposal bags, etc you go through in a month and no idea what they cost.

I change the flange every four days (when I shower) but have had occasions to leave it five and six days.
The bags I change when they get yucky. If I'm passing nice Swedish meatballs, I'll shake them into the toilet, maybe a little cleanup around the opening, and back on, using one bag for the duration. That's my norm. Otherwise, if the chocolate factory is making soft ice-cream, I replace them more often.

[HockeyFan]

Man, it sounds like I might not have enough vacation to get it done this year. Every appointment I go to I have to take a half day off of work.

It sounds like that's probably 1-2 days before surgery meeting with the surgeon and ostomy nurse to set things up, then five or so days in the hospital then multiple follow up visits. That's cutting it awful close to my ten day PTO limit. Anything goes wrong and I'm screwed and I could lose my job and thus my career... Maybe I'll just have to wait until I get my next job and try for it then. I just really wish I could get this bowel crap under control before then.

The meeting with the ostomy nurse and surgeon is usually short (an appointment), so it shouldn't involve taking 1-2 days of work unless you need to include time to travel to the appointment. I think my appointment was a week or two ahead of the surgery. The dot they apply for the site will stay on your skin (I think they gave me some kind of sticker to apply over the dot so I could shower). If it helps, I had my surgery mid-week so the five days I spent in the hospital included a weekend. Much of it is a waiting game to make sure everything works. If your job doesn't involve heavy lifting, you should be able to get back to work relatively soon - although I'd recommend giving yourself time to get fully back up to speed. As you'll hear from many people on this site, once you figure out the supplies that work for you and get into your routine it should provide you with a much more manageable routine. I wish you all the best, it sounds like a very stressful situation.

[funklab]

The meeting with the ostomy nurse and surgeon is usually short (an appointment), so it shouldn't involve taking 1-2 days of work unless you need to include time to travel to the appointment. I think my appointment was a week or two ahead of the surgery. The dot they apply for the site will stay on your skin (I think they gave me some kind of sticker to apply over the dot so I could shower). If it helps, I had my surgery mid-week so the five days I spent in the hospital included a weekend. Much of it is a waiting game to make sure everything works. If your job doesn't involve heavy lifting, you should be able to get back to work relatively soon - although I'd recommend giving yourself time to get fully back up to speed. As you'll hear from many people on this site, once you figure out the supplies that work for you and get into your routine it should provide you with a much more manageable routine. I wish you all the best, it sounds like a very stressful situation.

My job doesn't involve heavy lifting, but I do have to lift myself in and out of my car and the bathtub every day and toss a chair over top of myself to get in and out of the car four or six times a day. That's the most strenuous work I do though.


How many times did you guys have an accident while getting used to the new routine or waiting for the stoma to evolve?

It's looking like if I do go forward with it all those appointments and a few days in the hospital will pretty much leave me without any days off, so if I have a blow out at 10 am I'm gonna be stuck in whatever I'm wearing until 5 pm because I can't take the day off for medical reasons without jeopardizing my job.

[funklab]

Also, I've been looking into this more and colostomies are basically right by the waistline. How does your bag function if you're wearing something like jeans? It would seem to be that it would be quite difficult for stool to get past the waistline and point where the bag has to make a right angle because you're sitting with your thighs at a 90 degree angle to your upper body.

[pfcs49]

My stoma is just above my slightly low beltline.
never has been a problem

[SCI-Nurse]

Also, I've been looking into this more and colostomies are basically right by the waistline. How does your bag function if you're wearing something like jeans? It would seem to be that it would be quite difficult for stool to get past the waistline and point where the bag has to make a right angle because you're sitting with your thighs at a 90 degree angle to your upper body.

This is why you need to see the ostomy nurse to get your stoma site marked with you sitting in your wheelchair...both naked and with your slacks on.

(KLD)

[pfcs49]

I should add, you will develop an awareness of the thing. My bag is intersected by my blue jeans waist (no belt). I leave the top of the bag "bloused" so if the chocolate-factory makes a delivery, there's ample room for a moderate or partial shipment.
My usual MO is to un-snap my fanny pack and sometimes unbutton the jeans. then I'll pull my shirt tail(s) out, (taking care not to drag and un-snap the bag-that's happened)
If sitting at a table, I can do all this discreetly (and leave the shirt out but covered by the fanny pack if I'll need to attend to it again).
Now, with the entire bag free, I can flick most of the latest delivery into the bottom. awaiting the backorders.
Really easy, trust me!