Surgery and colostomy bag tips for active individuals?

Hello,

Are there any things I need to be advocating for with my surgeon that will make life better with a bag? Don't really know what is possible so I'm asking what you have already found out. If you are wearing one, you know what you wish you knew before you got it.

Thank you for sharing whatever info you can. Full of doubts and fears, but I have accepted that it's happening.

I am currently very active. Swimming, sailing, bike riding, and surfing. An energizer bunny type.

It's such an intimate subject. I really do appreciate that you are sharing your own thoughts on it with me.

The Ludicrous Frog

Hello and welcome to this site. In your post you don't explain what specific surgery you  are likely to have. However, on your profile it sounds as if it will be an ileostomy rather than a colostomy. I'd like to reassure you that if you have been resisting it this long, the chances are you are long overdue for a release of the problems you faced before. Most people don't have too much trouble adjusting to the new situation once the initial 'newbiness' has worn off.

Everyone is differerent with regard to what is or is not right for them so I would suggest contacting as many suppliers as possible and ask for samples.  This can be a fun exercise if you look at it that way and after that, you will be your own expert!

I always recommend having a look at past posts in the 'COLLECTIONS' section under 'content'box. There are loads of great psots in there from people just like you, on the beginning of their journey into osto-life. There aree also some great replies. I hope you find whatever you are looking for.

Best wishes

Bill 

Hello and welcome to MAO,

Bill is right, you will be your own expert once you are fully recovered. In my humble opinion, as far as supplies go, try as many as you can to find what works for you. For me, less is more.

Keep a record of the foods you eat and have four small meals rather than three regular portions.

Keeping a record will help you get to know which type of food will make your output too watery and which will help thicken things up.

Check out those posts Bill mentioned, and if you still have questions, we're here for you!

Hi Frog. Great advice from Bill and Mrs. A. Beyond that, I think the placement of the stoma can make a considerable difference in the quality of life with an ostomy. Consider a couple of things. If you want to cover the stoma with your pants, you can't have it too high 'cause you crush your "things" walking up steps, maybe getting in and out of the car, etc. You don't want it on the belt line. If you want the pouch outside your pants, you might want to think about how you'll hide it. Just make believe you have a stoma positioned somewhere on your belly and try all the different things with your belts, suspenders, whatever.

You'll probably be so surprised how good life could be when you put all the pieces together. Please keep us posted,

Mike

Thank you Mrs. A,

I will buy and try "faking it" for a few days with the options stuck on me before the surgery. Placement seems really critical and different for everyone. The food diary is a good idea. It raises another question. How sensitive to different types of food am I likely to be. Are the limitations minor or major?
All this is very helpful right now,

Ludicrous Frog

Stories of Living Life to the Fullest from Ostomy Advocates I Hollister

Hi Mike,

I am skinny, 6'2" 166 lbs. I wear jeans and t-shirts mostly. In your opinion, is a (full) bag under jeans a possibility? I would love to hide the whole thing if that's possible.

I don't know how full a full bag is? If I try to create the real situation/sensation before surgery, should I feel the bag to the brim? How many times do most people change/empty the bag each day?

I know everyone is different, just wondering if there are norms.

Thank you for your suggestions,

Ludicrous Frog

Thank you, Bill.

I will dig into the past posts in Collections. Life now is really limited. I am actually glad to be at the end because it means I am at the beginning of something better.

Regards,

Ludicrous Frog

Yes, Frog, it is going to be better. Since yours will be a planned and controlled surgery, it won't take long for you to recover. It also won't take long for you to learn to care for and adapt to your stoma. You will probably be able to return to full activity. Most of us eventually return to whatever level of activity we previously enjoyed, if not more. Keep us posted. Don.

Hey skinny frog, you didn't say if it's an ileostomy or colostomy you're getting.  That will make some difference as to what side the stoma goes on, probably at what height, consistancy of output and its activity during changes.  It's recommended we empty when the pouch is about one-third full.  That's a lot in my opinion and I don't think any amount beyond that in the bag could be "hidden" under the pants.  We know "necessity is the mother of invention" and we ostomates invent styles, processes, whatever we need to handle our new selves.  Please don't stop reading or asking questions.  

Mike 

You probably asked if it could be done without the colostomy.

I had chemo and radiation for an extra month, at my request, to try to avoid the bag. It helped reduce the size of the tumor but not enough. So, I had bowel resection surgery and the colostomy. Three years and still cancer-free.

I was very insecure about the bag at first, I even asked my best friends if they would think that I was some sort of freak, they said no.

Since then I've adapted just as I had to. Even my worst fear, rejection from women regarding sex has been dispelled!

Next, I am trying the irrigation method. With that, I may be able to drain my bowels in the morning and be done with it until the next morning.

Life just goes on if you want it to. I've been able to do anything that I did before.

JCF

Thanks for your ideas. It's an ileostomy. So that means it has to be positioned higher up? Or not?

A close and funny friend said to me that the idea of using a piece of paper to clean between your legs is not exactly the coolest or cleanest thing. We are just very used to it. Judging from the positive things I am now hearing I think he might be right.

Chris

Hi there .... From reading your profile, it sounds to me like you will be having an ileostomy (like me) ... will they be removing all of your colon (or what is left of it?). I have had my permanent ileostomy for over a year, and I do everything I want to do ... swim, hike, exercise, and now, thank goodness, I can eat all the foods I could not eat with my ulcerative colitis!!! The main thing is to chew, chew, chew.

We all tolerate foods differently. I have a lot of things to say, but since you said colostomy, I want to make sure you are going to have an ileostomy before going into details because actually a colostomate can eat much more and quicker than an ileostomate.

But as I have told many people -- I never knew how bad I felt until I felt good again! Things will be fine -- it sounds like you have a good, positive attitude going into this!

Paula

Hi,

Since it is a planned surgery, I would pick my spot for my colostomy. I live at the beach, so it was important to have a bathing suit that provided the coverage I needed. So, my daughter and I went bathing suit shopping, then marked my belly for the surgeon.

Also, if you have a chance to meet with an ostomy nurse pre-surgery, that may help with anxiety and uncertainty.

Good luck!

Tracy

I saw a WOCN before my surgery (I had 6 months to get prepared for the surgery) and she marked the best spot for the stoma, which turned out to be fantastic. She had me bend, sit, bend while sitting and standing, lots of things like that. Check out www.ostomysecrets.com and they have underwear and other things for ostomates.

Hi Frog! I reviewed my preferred activities with my surgeon and left the placement of my stoma to his judgment. It's as close to perfect as humanly possible. My surgery was early last November. The pain from severe Ulcerative Colitis I had been experiencing for years is gone and life is returning to a new normal. I hope you experience the same joy and revel in post-ileostomy freedom...

Great advice Silveradokid ... The placement of my stoma was, as I referenced above, determined by the WOCN and I could not ask for it to be in any more perfect position; plus my surgeon created a super stoma because it works beautifully. Like you, I have no pain, no UC issues, nothing ... life is good!

I would tell the surgeon to make your stoma length to be 1-1/4" long.

Hi Chris,

Welcome to the site. Since you have the time to plan, it's great that you're asking all the questions now. I'm Marsha. I had my ileostomy for ulcerative colitis, more than 50 years ago, when I was a kid of 15. I'm 68 now, and I have to say that despite the "ancient supplies" available 50 years ago, I've been able to do just about anything I wanted to do. I spent summers at the beach and at pools swimming, did the wild rides at water parks with my kids, I biked and hiked, and camped... had my two miracle children, and have travelled extensively these last 20+ years. Some of it was driving, some was flying in a single-engine plane, with no bathrooms, lots of cruising and lots of touring. Only fiasco was my appliance popped off while I was swimming in the Dead Sea in Israel. Messy but fixable. No fiasco snorkeling on the Great Barrier Reef... or when riding an elephant in Africa, or on a helicopter in Alaska! The best thing you can do/ask is consult with your doctor about stoma placement. Not too high... so it doesn't show when you wear a bathing suit... Sometimes, they have to place it where they can. If they're removing the rest of your colon, you'll end up with an ileostomy... meaning the stoma will be at the end of the ileum or small intestine. That will make for a more liquid output. But that can change over time. The colon/large intestine absorbs most of the fluids in our waste, so you need to remember to drink enough water, especially during the summer. The best suggestion is to eat easily digested foods at the beginning, like bread, pasta, rice, meat, etc., and add vegetables a little at a time, to see what works for you. Foods with more fiber (corn) will cause more bulk to the output. Many can eat raw veggies, some can't. I can eat some things like lettuce and tomatoes, but not raw carrots or cabbage. Dairy products can be an issue for some people if it triggers digestive issues. I gave up dairy products a few years ago and feel much better. But I do cheat on occasion for some good ice cream. I prefer a two-piece appliance and currently use Convatec... You can write to each of the companies and ask for suggestions. Trying a pouch on is okay... but most of the time, output is thicker than water. Don't try to fill the pouch completely, or you will "slosh". And yes... you can wear tight jeans, as flat as you're comfortable. As I've gotten older, I seem to have more air/gas... and that fills up the pouch faster than waste. If you have any other questions or concerns, just ask us here. Best of luck to you. Marsha

Frog!

Listen to the others... I woke up from surgery with an unexpected stoma. It's placed exactly on my beltline. No more jeans for life. BUT I'm a girl so I can do leggings to no end. I can hike them up high under a tunic top and no one is the wiser. Not sure how guys handle this...

I have THE perfect bag choice, but then my friend tried it, chose a different one instead, and now HE has the perfect bag choice. Personal choices, to each his own...

All good advice here, Frog. I have probably gotten more/better advice here than from my doctors.

I may add that if you are on the hairy side, look into electrolysis prior to surgery. My surgery was emergency so I didn't have time. Initially, I used a safety razor every time I changed my appliance. I developed skin issues and switched to an electric razor that has helped some.

Also, be very conscious of the possibility of future hernias. Discuss this fully with your doctor. In 2 weeks, I am having my 2nd hernia repair surgery in 4 years.

My stoma is located directly at my beltline also. This (besides the hernias of course) has been my biggest challenge to deal with. One inch lower would make a world of difference!

Good luck, Frog! I'm sure things will go well for you and you have many experienced "family members" here to help you.

Hi Frog: I am fairly new myself. I put this off for about ten years by having a cecostomy. I am sorry I didn't do it sooner. It changed my life. It was the best thing I did. My stoma is very close to my belt line. I am not that big and the WOCN marked the spot after doing all the bending, but she told me there was much room to put it any place else. My stoma is also 1 inch from my abdomen. This makes it difficult for wearing clothes, but I do the same thing as Not dead yet: leggings and tunics.

I called for samples from every company I could find. I tried them all and found what is best for me. It is trial and error for everyone because we are all different. You need to find a supplier that carries whatever you decide to use. There are more than just the big 3 companies. I am allergic to adhesive, which makes it more of a problem. I use Coloplast and they have a cream called Sween Cream. It is the only cream that you can put under adhesive.

I am very much a workout junkie. I have not found anything that I am comfortable with; they all make my wafer peel off. NU-Hope is what works best for me. They are foam and have an adhesive that will keep your appliance on forever. I put a little on the perimeter of my wafer; it seems to work.

Remember that there are a lot of companies you don't hear about like Cymed, Torbot, Marlin.... check them out, too. Good luck, you will find what works for you.

Pray for Peace, Hana

So Frog, as we from New Jersey ask, "How you doin?"  Hope things are going OK and you have a better idea of where you are and where you're going.  Drop us a line if you can.

Respectfully,

Mike

My basic regret was that the stoma was placed exactly on my belt line. Difficult on clothes and as you bike, it will be a bit in the way. Above belt line would have been better for me. This is something you can ask for.

Like Pooter said, talk to the surgeon about what your stoma will be. I didn't do that, never even thought about it. Had colostomy done 1/3/22. Have a stoma that is flush with my slim but rolly Polly belly. So I need a convex baseplate with a sticky donut on it to try to make it flush with the contours I have. And I have to wear an elastic belt attached to the top flange of the pouch, to exert pressure on the stoma.

So yeah, big topic.

Good luck, God bless, keep posting!