Getting a colostomy for my 31st SCI anniversary!

[Shannon]

I am T10/11 incomplete para and just had a colostomy three weeks ago. I decided on it after struggling for years with bowel issues. I have IBS (even before injury) and ended up spending upwards to two hours morning and night in the bathroom. I was losing sleep and my butt hurt all the time. Finally I was developing prolapsed rectum and other issues, so I opted for the colostomy. So far I'm pretty happy with it. At the six week point I am going to start using the irrigation method. Has anyone else used this method? I understand you only need to irrigate every other or every third day. Good to know that the noise settles down after awhile. Right now I don't feel comfortable in social situations. A nurse friend of mine told me about a product that reduces the odor called Devrom. I ordered some and will post the results. I am not sorry I opted for the colostomy at all. I have already gained back hours and hours of my life just in three weeks. Now I have a quad friend who is considering it , too.

I'm curious... why do you plan on using the irrigation method? I considered it, but decided it wasn't worth the extra work.

Regarding noise, I'm not really having an issue with it anymore. However, I have recently started taking Imodium. My stool was very liquidy. With the Imodium, it's soft, but not liquid. Also, I think the Imodium reduces the gas quite a bit.

[Shannon]

I'm sure that will calm down when your body adjusts.Sorry,but I giggled at this.I want to thank you too.I'm tired of a bp ruling my life not to mention accidents even if it's just "return".I've been pondering this for some time too.The bag,smell & noises cause my anxieites still yet but so does the latter.I still have another consult as to whether I'm having a urostomy.I told my husband"what the hell,why not two bags?!"The freedom must be liberating for sure though!Where is the stoma?Can it/does it go on your side?How high/low?I'm glad things are going well for you,good news.

It is liberating. I have to say, having one more bag for urine is very tempting! I'm not having any bladder issues though, so I'm not considering having that done.

Regarding the bag... at about 2 1/2 I lost my anxieties about the bag. It just doesn't bother me anymore. The noises seem to be under control. As for the smell, I worry about this. I'm told people can't smell it, but I swear I can. Is it all in my head? I don't think so. I think maybe as long as it's covered with clothing, nobody can smell it. When I am changing clothes or I pull my pants down to use the toilet, I can smell it. Of course, I can smell it when I change the bag. They gave me some odor eliminator stuff that you put in the bag. I don't think it helps at all.

Placement of the stoma varies. I believe mine is higher than where they normally put it on a standing person. Mine is slightly above my belly button and fairly close to to it and NOT on my side. I kind of wish it were more on the side because I don't need the extra bulk right there in front!

One thing I've discovered that I really like is wearing a bodysuit. It makes me feel like it's more secure. It also helps reduce the crinkly noise that the bag makes when you move.

Before I had my surgery, I wore a bag for a few days. I think this is a good idea because then you'll know kind of what it's going to be like and where it should go, etc.

I have a little more to say, but I have to get going. I will write again later.

[Shannon]

I'm sure that will calm down when your body adjusts.Sorry,but I giggled at this.I want to thank you too.I'm tired of a bp ruling my life not to mention accidents even if it's just "return".I've been pondering this for some time too.The bag,smell & noises cause my anxieites still yet but so does the latter.I still have another consult as to whether I'm having a urostomy.I told my husband"what the hell,why not two bags?!"The freedom must be liberating for sure though!Where is the stoma?Can it/does it go on your side?How high/low?I'm glad things are going well for you,good news.

Before I forget, there was one quick thing I wanted to tell you. My dogs have shown no interest in my bag. I thought when I got home from the hospital, my lab would have his nose attached to that area for a while, but he didn't even sniff at it. Also, I've been around lots of other dogs at the dog park, and they all ignore it.

[Steph73]

Shannon,
Most of the time the foods that you eat can determine how bad your stool stinks. There is a chart somewhere that shows what foods produce gas, odor, etc. I will look for it and post the link when I find it.

Some suggestions:
1. Keep a spare flange/wafer & bag on you when you are out. You could always have a blowout (esp when you are getting used to the whole colostomy thing) and that will safe you from an awkward moment.
2. I have found that a method called "picture framing" works wonderfully to increase the amount of days my flange stays on. This is simply putting a piece of tape over the sides of the tape on the flange to help keep it in place, reinforcing it. If I don't do this I have to change my flange every 3 days, with this I can go at least a week.
3. I don't find that anyone notices any smell from my colostomy. I can only smell it if I've eaten the wrong foods. Usually the only time there is any odor is when I burp the bag (letting excess air out, bags with filters hate me) or when I change the bag.
4. Some stuff called M1 drops MIGHT help with the odor. I would strongly recommend visiting the site I pm'd you, others have some really good suggestions to controlling odor.
5. Find a good ET/Stoma nurse and have her get you a listing of the different companies that produce colostomy supplies. You might find a system that works best and makes the odor less noticeable to you. These manufacturers are really good about sending out free samples for you to try since they want your business.
6. Try new foods SLOWLY. Some people find that they can eat anything with their colostomy with no problems. I cannot. If I eat the wrong foods (nuts, roughage, popcorn, etc) I run a serious risk of a blockage. Shortly after my surgery I was eating some mentos candy and had a partial blockage. Thankfully I was able to call my et nurse who recommended irrigating (worth learning if you do get constipated or a small blockage) and was able to force the hard stool out. Blockages are serious business; they can put you in the hospital where you are either given loads of iv liquids very fast to remove the blockage or face surgery to remove it. Believe me you don't want to risk more surgery on the bowel as that will create adhesions that could cause more blockages.

I don't mean to overwhelm you with information. Just want you to be informed so that you can move past the colostomy and enjoy yourself without worrying about smells and stuff.

Steph

[sjean423]

This morning I was thinking about how before I had the surgery I assumed my roids would clear up when I stopped using that hole . I'm wondering now if that's true. I never asked my doctor about it because like I said, I assumed they would go away. But do they go away on their own, especially if I'm sitting on them all the time???

It has been 4 years, mine are still there, but don;t bother me. I assume they are smaller, but never really looked at them. They feel smaller to me. I had a lot of issues before, and was ready to deal with them about the time I got hurt. I want to say that they still bothered me for several months post? Since I have no feeling, that is hard to explain, but it is sort of like they were there, and then faded away as far as bothering me? Obviously, no more issues w/ them bleeding.

Re the odor. If it were there Shannon, I think your dog WOULD notice. I find the m9 drops really help, (I think I use more than directed, I put a good squirt in) and only notice it when I am changing the appliance or if I need to let gas out as well. So, I only let gas out in the bathroom. The other times I have noticed a whiff, it is b/c there is just a bit of a leak starting, and then I have time to change it before I have any issues. SO I pay attention if I notice anything! If you are worried about it ... ask someone you can trust to be honest.

(My dog doesn't nose at it either, byw)

re being afraid to go out .... I have bladder issues at times, and sometimes have let THEM rule my life for a bit. I would be a lot more worried about a bowel accident that a bladder one in public. SO I can just imaging the level your concern was. So glad it is working!

[wheelady]

irrigation

I'm curious... why do you plan on using the irrigation method? I considered it, but decided it wasn't worth the extra work.

Regarding noise, I'm not really having an issue with it anymore. However, I have recently started taking Imodium. My stool was very liquidy. With the Imodium, it's soft, but not liquid. Also, I think the Imodium reduces the gas quite a bit.

Hi Shannon
My ostomy nurse (who's fantastic, BTW) says it's probably the best for me. I have a problem of going several times a day, which is totally annoying. So I go through bags like crazy. If I go the irrigation route, in theory I should only have to go every other day. That's what we're hoping anyway. My stool is like paste. Cannot get it to form. Tried fiber pills but then it turned to concrete. Yet another reason to try the irrigation method.

I am very very happy I did this. I already feel I've gained so much time back. It's definitely a freeing experience.

[wheelady]

bag and dogs

Before I forget, there was one quick thing I wanted to tell you. My dogs have shown no interest in my bag. I thought when I got home from the hospital, my lab would have his nose attached to that area for a while, but he didn't even sniff at it. Also, I've been around lots of other dogs at the dog park, and they all ignore it.

I have two Labs and an Eskie and none of them seem interested in mine at all. Aren't Labs the best???

[doingtimeonmyass]

I am T10/11 incomplete para and just had a colostomy three weeks ago. I decided on it after struggling for years with bowel issues. I have IBS (even before injury) and ended up spending upwards to two hours morning and night in the bathroom. I was losing sleep and my butt hurt all the time. Finally I was developing prolapsed rectum and other issues, so I opted for the colostomy. So far I'm pretty happy with it. At the six week point I am going to start using the irrigation method. Has anyone else used this method? I understand you only need to irrigate every other or every third day. Good to know that the noise settles down after awhile. Right now I don't feel comfortable in social situations. A nurse friend of mine told me about a product that reduces the odor called Devrom. I ordered some and will post the results. I am not sorry I opted for the colostomy at all. I have already gained back hours and hours of my life just in three weeks. Now I have a quad friend who is considering it , too.

Glad to hear another satisfied customer. I also agree that it is life-changing, especially if you're unable to perform a bowel program by yourself. I've had my colostomy for less than a year and have been irrigating for the last couple of months now. There's nothing in my pouch most of the time, but I don't think I'd ever be confident enough to not wear at least a small pouch.

I bought a Coloplast irrigation kit because I like the little spinning wheel indicator that makes it easy to see if the water is going in and how fast. I use about 500 mL of water (some use more) and everything is out in about a half-hour. I'll irrigate on Friday so I can go the weekend without having to worry about having anything in the pouch. By Sunday evening I may have some poop in the pouch, but not always. Monday morning I definitely irrigate because I like starting the week off with a good dump and knowing that I'm not getting backed up. Most Wednesdays I'll do it, but if I'm in a hurry that day, I'll just let it go until Friday. That's how I roll and so far so good!

[doingtimeonmyass]

Shannon, glad to hear you still feel good about your decision. What brand of appliances are you using?

Does anyone have any consistent luck with the charcoal filters? I mean they seem like they work, but sometimes I'll try to roll the bottom of the pouch upward to force air through the filter and it just doesn't want to do it.

[Shannon]

Shannon,
Most of the time the foods that you eat can determine how bad your stool stinks. There is a chart somewhere that shows what foods produce gas, odor, etc. I will look for it and post the link when I find it.

Some suggestions:
1. Keep a spare flange/wafer & bag on you when you are out. You could always have a blowout (esp when you are getting used to the whole colostomy thing) and that will safe you from an awkward moment.
2. I have found that a method called "picture framing" works wonderfully to increase the amount of days my flange stays on. This is simply putting a piece of tape over the sides of the tape on the flange to help keep it in place, reinforcing it. If I don't do this I have to change my flange every 3 days, with this I can go at least a week.
3. I don't find that anyone notices any smell from my colostomy. I can only smell it if I've eaten the wrong foods. Usually the only time there is any odor is when I burp the bag (letting excess air out, bags with filters hate me) or when I change the bag.
4. Some stuff called M1 drops MIGHT help with the odor. I would strongly recommend visiting the site I pm'd you, others have some really good suggestions to controlling odor.
5. Find a good ET/Stoma nurse and have her get you a listing of the different companies that produce colostomy supplies. You might find a system that works best and makes the odor less noticeable to you. These manufacturers are really good about sending out free samples for you to try since they want your business.
6. Try new foods SLOWLY. Some people find that they can eat anything with their colostomy with no problems. I cannot. If I eat the wrong foods (nuts, roughage, popcorn, etc) I run a serious risk of a blockage. Shortly after my surgery I was eating some mentos candy and had a partial blockage. Thankfully I was able to call my et nurse who recommended irrigating (worth learning if you do get constipated or a small blockage) and was able to force the hard stool out. Blockages are serious business; they can put you in the hospital where you are either given loads of iv liquids very fast to remove the blockage or face surgery to remove it. Believe me you don't want to risk more surgery on the bowel as that will create adhesions that could cause more blockages.

I don't mean to overwhelm you with information. Just want you to be informed so that you can move past the colostomy and enjoy yourself without worrying about smells and stuff.

Steph

I went to the website you suggested. I sent for approval and they never responded. I guess I will try it again.

How do you know when you have a blockage/partial blockage? I'm very irregular and so sometimes I'll have stool in the bag a couple of times in one day, and other times I'll go three days with nothing. So far, even after it's been days since anything has passed, my stool has never been formed. It's always watery or like paste.

[Shannon]

It has been 4 years, mine are still there, but don;t bother me. I assume they are smaller, but never really looked at them. They feel smaller to me. I had a lot of issues before, and was ready to deal with them about the time I got hurt. I want to say that they still bothered me for several months post? Since I have no feeling, that is hard to explain, but it is sort of like they were there, and then faded away as far as bothering me? Obviously, no more issues w/ them bleeding.

Re the odor. If it were there Shannon, I think your dog WOULD notice. I find the m9 drops really help, (I think I use more than directed, I put a good squirt in) and only notice it when I am changing the appliance or if I need to let gas out as well. So, I only let gas out in the bathroom. The other times I have noticed a whiff, it is b/c there is just a bit of a leak starting, and then I have time to change it before I have any issues. SO I pay attention if I notice anything! If you are worried about it ... ask someone you can trust to be honest.

(My dog doesn't nose at it either, byw)

re being afraid to go out .... I have bladder issues at times, and sometimes have let THEM rule my life for a bit. I would be a lot more worried about a bowel accident that a bladder one in public. SO I can just imaging the level your concern was. So glad it is working!

My roids still bleed. Hopefully that will stop soon.

I have the M9 drops, but it doesn't seem to help at all. Maybe I'm not putting enough in. It says to put about 10 drops in, which is what I do. Maybe I will try using more.

As for asking someone I can trust to tell me the truth about odor, that would be my daughter! I haven't asked her, but I KNOW she would tell me if she could smell something. So I guess I'm good! She has never been around me when it isn't covered by clothing though.

[Shannon]

Hi Shannon
My ostomy nurse (who's fantastic, BTW) says it's probably the best for me. I have a problem of going several times a day, which is totally annoying. So I go through bags like crazy. If I go the irrigation route, in theory I should only have to go every other day. That's what we're hoping anyway. My stool is like paste. Cannot get it to form. Tried fiber pills but then it turned to concrete. Yet another reason to try the irrigation method.

I am very very happy I did this. I already feel I've gained so much time back. It's definitely a freeing experience.

I see. My stool is like paste too. Is that a bad thing or just an annoyance because you have to change the bag so often?

I hope the irrigation works well for you! Please let us know how it goes.

(Labs truly are the best! )

[Shannon]

Shannon, glad to hear you still feel good about your decision. What brand of appliances are you using?

Does anyone have any consistent luck with the charcoal filters? I mean they seem like they work, but sometimes I'll try to roll the bottom of the pouch upward to force air through the filter and it just doesn't want to do it.

I'm currently using 2-piece Hollister, but I think I will give some other brands a try. I thought I'd prefer the closed pouch, but I'm thinking of switching to the drainable pouches. I think I would prefer to drain the stool into the toilet rather than throw it in the garbage.

[Shannon]

Intimacy

What do you do? Just have a bag hanging there? Do you worry it might get ripped off accidently?

Do you cover it so it's less unattractive?

I haven't been intimate with anyone yet, but I won't be able to say that after tomorrow night.

[CowboyCrip]

what do you do? Just have a bag hanging there? Do you worry it might get ripped off accidently?

Do you cover it so it's less unattractive?

I haven't been intimate with anyone yet, but i won't be able to say that after tomorrow night.

go shannon! Go shannon! Go!