Can we please talk about colostomies/ileostomies?

[TinaFish]

Hello, everyone. I'm reading about these things in a lot of peoples' signatures. Can you please tell me, if you had one, whether it was temporary or permanent, and if it had to be permanent, then why? I'm so sorry for asking personal questions; I'm just scared and want to be prepared in case I need the procedure.

What's it like living with it? I've seen photos on the internet, but I think that it could make life so difficult.

#1 - sexual activity. How can you do that self-confidently without worrying that the bag is going to become full during sex, or worse, that it will get squished and leak its contents?

#2 - What if you're just one of those people who is a restless sleeper, like I am, and you have to worry about rolling into your side/stomach in the middle of the night? Again, my concern would be that the bag's contents would leak.

#3 - Do you have any control whatsoever as far as when the waste goes into the bag? I mean, do you have the ability to "hold it" for any length of time, or does it just go into the bag whenever it wants to?

#4 - If you do have some control like I mentioned in #3, then instead of wearing the bag 24/7, do you have the option of putting some type of tape over the hole for a little bit of time, just to cover it up and hide it so that you could have sex more confidently, wear a stomach-bearing bathing suit at the beach/pool, etc?

#5 - I know that the bag has some kind of adhesive that sticks to the skin. I can't imagine how a person's skin wouldn't become irritated and itchy if that adhesive is on the skin 24/7. If I wear a band-aid for a few hours, my skin itches. Also, any sort of medical tape that doesn't allow my skin to breathe causes perspiration under the medical tape, and that not only ruins the adhesion, but it causes really bad itchiness.

I guess what I really want to know is... do you EVER get a break from wearing the bag? If so, for how long?

Thank you so much. Please don't be offended by the highly personal questions. If anyone is offended, I apologize in advance.

[Soccermom2boys]

Hi TinaFish! Welcome to ColonTalk.

I have a permanent colostomy (since December 2015) so I will answer your questions as best as I can from my own personal experience and I am certain that others with ostomies will as well, give them a little time.

#1: There are items called “wraps” that you can wear that effectively keep the ostomy bag in place as they wrap around your waist so there is an option. If you are with someone who loves you for you then they won’t mind if you have an ostomy bag when you are intimate. Empty it before you get in to bed and you should be good to go—if not, it is what it is!

#2: Yes, sleeping on your stomach could be an issue—mostly for those who have an ileostomy, not as much for those with a colostomy. Invest in a good waterproof mattress pad for sure and know that there may be random times that a leak occurs. As for me with a colostomy, my output is thicker and generally takes a break when I am sleeping at night so (knock on wood as they say) I haven’t had any leaking whatsoever at night and I can probably count on one hand the times I woke up in the middle of the night and had to empty my bag because it felt too full.

#3: You have zero control of the timing of output. I guess if you don’t eat then technically you can control nothing coming out, but I wouldn’t advocate that. LOL Output really just comes whenever it is pushed along and has built up enough to come out. Now that I don’t have them, I sooooooo appreciate the function of both anal sphincters and a rectum!

#4: If you have a colostomy you can irrigate which is essentially the same as giving yourself an enema and depending on your body and eating habits, that can give you 24 or more hours of no output and generally they choose a stoma cap type of covering which has a much smaller profile when compared to an ostomy pouch. I will admit that I don’t irrigate because I know it needs to be consistent to be effective and I know myself enough to know I probably wouldn’t keep up with it on a daily basis to make it worthwhile—so I do wear one 24/7. I am not going to say having a colostomy is awesome, but it’s really not all that awful either and most of the time it’s not a big deal to just empty it like a normal person would with a regular bowel movement. I live at the pool during the summer and I have several tankinis and I guarantee you that if you saw me in them you would never know I had a colostomy pouch on underneath. I found these bottoms at Lands End that rock and are perfect for my situation.

#5: Everyone’s skin is definitely different so unfortunately, yeah, you might have a tough time with the material within a wafer. On a good note, there are a large amount of manufacturers and so hopefully you would find one or more that does not bother your skin. Because the output of an ileostomy is so much more caustic because it doesn’t have the colon to absorb the water from your waste, those with ileostomies are waaay more likely to have skin irritations and again, no way to get around that happening—you just hope you find a product and get a system working for you that reduces those problems as much as possible. I don’t have many skin irritations I am happy (and fortunate) to say, but I have some products that I keep for when I do and they always come through for me when needed.

It’s always interesting to read how much people will do anything to avoid an ostomy and I understand because it’s not what you necessarily think you’ll ever want, but it really is not as horrible as I think people imagine it to be. Life absolutely goes on and I haven’t missed out on anything because of it. When I read people who are dealing with major issues from LARS I appreciate my situation. My tumor was literally butting up against my anal sphincter so I knew going in to the surgery it was all going to be removed if I wanted clean margins which was way more important to me than whether or not I had a permanent colostomy.

I was not offended by your questions, they were all honest and coming from a place of curiosity and concern as you figure out this new path that CRC has put you on. Has your medical team suggested you may need an ostomy? Permanent vs temporary is a BIG difference as well and colostomy vs ileostomy are also definitely different. Unfortunately one of our members, Miss Molly, is no longer on the forum due to her own health issues, but wow were her posts so informative, insightful, and thoughtful regarding ostomies. Definitely use her name in the search feature and you will be treated to a wealth of information, not to mention her compassionate voice—damn, I miss her!

I hope I was able to alleviate some fears or concerns—again, we are all so unique so no two people have exact same experiences, but this at least gives you one to use as a guide. Let me know if you have more that I can help you out with!

[Jacques]

You can find a lot of ostomy support on the ostomy website. This is where most of the imporant ostomy topics are covered:

... The United Ostomy Association of America has an online support forum. This forum was a life-line to me during the early months of recovery. Feel free to go the United Ostomy Association of America website and click on the support forum. People helping people.

http://www.uoaa.org/forum

If you are looking for ostomy information here on the ColonTalk message board, you can start by searching MissMolly's many posts in this area:

https://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=58013&p=456986l#p456986

You can also read some of the past Colon Club blog posts on this topic, for example,

Blog post

[TinaFish]

Thank you to both of you! So much information! My doctor did say that if we operate, then I'll need a colostomy or ileostomy. I was too scared to ask specific questions. I have no idea whether it would be temporary or permanent. Right now, we're in the beginning stages of treatment, so we're focusing on chemo. I have stage 4 rectal cancer.

Soccermom - you're only a few years older than I am. It's inspiring how someone whom (I feel) is still so young, is feeling ok with having this procedure. Thank you for the detailed response.

[Rock_Robster]

Hi TinaFish, I’ve had my ileostomy for only a week, so I can give you a novice’s early impression!

Mine is temporary - I had an ultra low anterior resection (ULAR), for a rectal tumour about 10-12cm above the anal verge. This means they could spare the sphincter muscles. The ileostomy is to give the anastomosis (connection) time to heal after surgery, and minimise the risk of any early leaks. This is especially important after radiation therapy (and chemo). The plan is to reverse it in 3-4 months. If the tumour is too low to spare the anal sphincter then sometimes a permanent ostomy is required. My understanding is that in this case they would usually try for a colostomy as they are significantly easier to manage.

1. My plan is to empty the bag first, then use a wrap (on the stoma, not to blindfold my wife)
2. I mainly have been sleeping on back, but it seems to be ok if I go to the side as well. Stomach would be tricky though.
3. Nope. It does seem to be less active first thing in the morning.
4. Nope. The only place you might consider having it uncovered would be in the shower.
5. I react badly to many adhesives, and so far my skin has been ok with it, touch wood. They use quite a high-tech hydrocolloid adhesive which works very well. I also use a powder when changing the bag to help clean and protect the skin.

Hope this is of some help.

Cheers
Rob

[_Jelen90]

My husband ended up with a permanent colostomy since his tumor was very low so that was pretty much his only option unfortunately. What helped him a LOT is the steath belt. He wears it pretty much all the time so his bag goes unnoticed even when he goes swimming. You can get it on www.steathbelt.com. It's about 150$ and there is a few different models.
You can also get some flusable liners that you put in your bag so that saves you from having to clean it each time or change it if you are using the disposable bags.

I'm not gonna lie to you it was hard for him to accept but at the end I think it's a small price to pay to get rid of the cancer and a lot of ppl nowdays live with colostomies/illeostomies.

[NHMike]

I had a temporary ileostomy after rectal surgery. I had it for 10 months and it was located on my right side at the junction of the small and large intestines. My understanding is that a colostomy is on the left side, maybe a bit lower.

After surgery, there was a bag attached to me and I didn't get much explanation. They explained it to me a few times before surgery but I wasn't paying close attention. It was a lot of information in a short period of time and it felt surreal. So I wake up from surgery and it's attached to me but I'm not eating anything so nothing comes out. I got some training on changing it but it went by very quickly. I had a followup appointment scheduled with the WOC nurse (wound, ostomy) for a week later but it got pushed out to a month and that was a big problem. I had a lot of problems with the bag - leaking and burning. At the appointment, the nurse listened and gave me a different pouching system which worked a lot better. I did have Visiting Nurse Care but it wasn't useful.

On changing the bag: you remove the old bag, clean the area, use wipes to apply an adhesive/barrier and then put on the bag. You may have to prepare the bag (as in cut it to size). I had someone helping me to change the bag and my best time was 7 minutes. Sometimes it took up to 45 minutes. There are a lot of different products out there and discovery can be time-consuming. People on this forum can make suggestions. I wound up using a spray instead of the wipes for barrier as it was a lot more convenient.

Waste from the small intestine is caustic so it can burn skin if it gets on your skin. The hole that fits over your stoma isn't exact so there can be room for leakage into your skin.

I bought a triangular wedge to sleep on so that my upper body was higher than my lower body so that waste flowed down and I slept on my back. I also set alarms twice at night to check to empty the bag. I did fall down the stairs twice as my habit was to walk with the lights off and one of the chemo drugs did a number on my ability to feel the edge of the stairs.

There is often a filter near the top of the bag. If waste gets on the inside of the filter, then the filter stops working. The filter allows gas to escape. If it doesn't escape, then the bag can puff up and break the skin seal and leak. So it's a good idea to sleep elevated.

The only time I had the bag off was when I was in the shower, either to shower or to change the bag.

I would not tape the stoma nor would I put any pressure at all on it.

The purpose of the bag was to allow my intestines to rest through chemo. I felt pretty crappy through chemo so sex wasn't a major concern (my advanced age might have something to do with that too). My long thread has a lot of gory details if you care to read it.

[HappyNao]

I'm about 8 weeks into my ileostomy adventure, it's temporary, will be reversed probably in February after I'm done with chemo. It was necessary because I had radiation before the surgery, it's to give my rectum/colon time to heal.

#1 - I empty the bag beforehand, and I bought a wrap that goes around my middle and has a pocket to hold the bag. It's not sexy, but it works and my husband doesn't seem to mind! It's only been about a week since we started having sex again, but so far we just do positions where I'm in control and there's not much opportunity for squishing the bag (no missionary). Really, if your partner loves you and you can communicate with him/her, it shouldn't be a big deal.

#2 - I'm a stomach sleeper, so this one has been worrying me too!! I prop a pillow on either side of me to stop me rolling over on the bag. The only leak I've had so far was a night we went out to dinner and I overate, I've found that if I eat a light dinner it's better over night. I still have to empty the bag once in the middle of the night usually.

#3 - No, but I've found it does become somewhat predictable if I'm eating around the same time every day, so I can usually time the bag changes around when nothing, or not much of anything, is coming out.

#5 - I have super sensitive skin, and was having allergic reactions to the first brand of bags they used. The ostomy nurse set me up with a different brand, and it has been much better. I wouldn't say that my skin is happy, but it's not itchy/burny/rashy anymore.

Those answers make it seem like this has been relatively easy... Honestly it's taken me the whole 8 weeks to start feeling comfortable about it, and even though it's really not that bad the ostomy has been my least favorite part of this whole experience so far. But I went from a distressed post about how much I hate the thing to my current state of well I don't love it but I can live with it in about the span of a month.

Good luck!! I'm so sorry you have to be here, but these folks have helped me immensely, and I hope it's the same for you.

[NHMike]

Something else to consider is putting together a kit to deal with problems on the road or when traveling or for dealing with emergencies and problems. I received a nice little bag from Coloplast with some of their sample products. You can put in a bag, wipes, spray, plastic bag, some toilet paper (for when you find that the bathroom you're using is out). I carried this around with me wherever I went (unless I had a place with similar supplies).

[TinaFish]

Your responses are so detailed and informative!! But I'm seriously more worried now than I was before! It really sounds like a difficult thing to live with. I can totally see myself staying in the shower for a super long time just so I can have the bag off.

[HappyNao]

Like anything else, you get used to it. Don't be afraid to bother the ostomy nurse between appointments, that really helped me.

[NHMike]

What happened to me after surgery. I was not as well-prepared as you are as I didn't really know what to expect.

viewtopic.php?f=1&t=58447&start=285

[Lee]

Hello, everyone. I'm reading about these things in a lot of peoples' signatures. Can you please tell me, if you had one, whether it was temporary or permanent, and if it had to be permanent, then why? I'm so sorry for asking personal questions; I'm just scared and want to be prepared in case I need the procedure.

What's it like living with it? I've seen photos on the internet, but I think that it could make life so difficult.


#3 - Do you have any control whatsoever as far as when the waste goes into the bag? I mean, do you have the ability to "hold it" for any length of time, or does it just go into the bag whenever it wants to?

#guess what I really want to know is... do you EVER get a break from wearing the bag? If so, for how long?

Thank you so much. Please don't be offended by the highly personal questions. If anyone is offended, I apologize in advance.

#3 had me laughing . As I tell people, I have as much control as a bird, none at all And no I am not offended, if anything I am more than willing to talk about it. Many doctors and people in general have picked my brain on this subject over the years. I feel like I am educating people as I believe there are many false myths out there regarding a colostomy.

My permanent colostomy gave me my life back. Radiation destroyed 2/3 of my rectal muscles. I was tied to the toilet for HOURS if I ate a anything. Many days I did not eat until I knew I was home for the day. Sometimes that was 3 or 4 in the afternoon.

My worst day prior to my surgery, wake up in bed knowing I had to go NOW. I only have seconds, did not make it. Sat on the toilet for 20-30 mins, thought I was done. Got in the shower to clean off, had another accident in the shower. Tried to make it to the other bathroom ( thank goodness, we have a 3 bathroom house), did not make it. Sat on that toilet for an hour, then cleaned up all my accidents/messes and took another shower.

I could not leave the house without Depends on and a change of clothes if I needed them. If my husband and I got to go out for dinner, I have 1 hour, then my stomach would rumble. Drop everything and RUSH home NOW as I only had 15 mins, then the fun begins I got to be very good on Tetris with the orginial Gameboy, not to mention solitare.

When I saw the surgeon following radiation and learned about my destroyed rectal muscles, I understood then why I had no control. She referred me to an ostomy nurse, ostomy nurse requested both my husband and i attend. That was when we learned what a colostomy bag was. I left that meeting knowing I wanted one and I had my husband's full support. As he put, you can have your life back with that bag. Best decision I made. Told my surgeon to take all she wanted, just get all the cancer.

Now instead of Depends and a change of clothes, I carry extra supplies with me. Know that I have control back. Yes I may have to change a bag soon, butt it's not like I have to leave the dinner table for hours because I need to sit on the toilet. I can finish my meal, then just change a bag. Takes all of 2-3 mins, not hours.

Yes there is a learning curve in the begin, sometimes I did blow a few wafers (part attached to my skin) in the begin. But now if I blow a wafer, I'm asking myself what did I do wrong, because I know it was me.

I've had a colostomy bag for 15 yrs, and do not have skin issues. I have in the past, developed a fungus around my stoma early on (jock itch, yeast infection, & athlete's foot are all caused by the same fungus), got to see an ostomy nurse, problem solved. I use a special powder. Few yrs back, DS had bad athlete's foot, told him to use the powder, he was like "wow mom, that is awesome". Stopped the itch instantly. He now keeps some with him always. Few yrs out, developed another itch, saw the ostomy nurse and found out I was developing an allergic to the wafer. Change brands, problem solved, that was more than 12 yrs ago, ostomy nurses can be worth their weight in gold.

Having the colostomy does not slow me down. When my son was younger, I could go on all day field trips with his class. I go swimming in the ocean, horse backing riding. etc.

I keep a bag on me at all times. Again I have no control when it comes to output. Prior to my diagnoses, I never had diarrhea or constipation unless I was sick or on medicine. Now I can do that almost daily with my output. It started out firm and generally ends with more liquid output. Certain foods like salad greens with give me a more liquid output, butt because I go into a bag, not a problem. Because of above accident in shower (it was bad), DH has requested I keep a bag on in the shower. I know many people go a la natural in the shower.

Hope this helps, please feel free to ask any and all questions, Good luck,

Lee

P.S. Edited to add, my rectum is 100% gone. I have what is know as a Barbie butt, all sewn up back there.

[Rikimaroo]

It’s very intimidating the first 2 weeks then after you find it a breeze to change manage and your good to go. I was nervous I had temp ileostomy for six months. I miss my bag cause I didn’t have to worry about unpredictable bathroom trips, 30-40 minutes on toilet only to think your done then boom you have to go again and spend another 10-20 minutes and that can go on for 2-3 hours.

I have my own business but not making a ton of money yet so driving Uber and Lyft for extra income
Was a thing now I am super nervous because if I have someone in the car I can’t just stop to poop and also sometimes the poops comes On so strong that it’s hard to fight it like when I had a rectum.

I mean most days are good but the worse days burn butt from going so much really sucks. It also affects your sex life cause when your butt is in pain hard to get a boner lol