Adjusting to Life as a New Ostomate: Seeking Advice and Support

I'm 5 days post-surgery and I'm hurting so bad! I'm not sleeping well because I'm a tummy sleeper and that's not working. I'm totally overwhelmed with the ostomy products and how to find a system that works for me. I just got my first box of supplies that the ostomy nurse ordered. The liquid diet I can do, but I'm not hungry. The pain is just not what I thought it would be.

Now I'm going to talk about the gross stuff…first of all, the pouch is hanging between my legs. I feel like I have a set of balls when I walk! I'm probably just paranoid, but I swear I smell like poop. And lastly, I was not prepared for the very loud sounds my stoma makes. Oh, and I have yet to experience any mucus from my original equipment.

You may have already guessed that I'm not very patient, so I need all the information. If it weren't for all this pain, I would be up cooking and cleaning.

I'm not trying to sound like the complaint department. I was mentally prepared for getting a colostomy but not for this much pain. 😭

The pain goes away; just think of it like you just did 1,000,000 sit-ups. You're going to be sore for a while. Keep up with taking painkillers; I lived on Tylenol for about a month, taking it religiously as the directions say. Having something hanging between your legs isn't as easy as it looks, huh? 😁 You can always fold your bag up some, use a wrap or belt to hold it, or even get kid-sized bags. I was a stomach sleeper too; you'll get used to it. The worst thing you can do is push yourself too much and prolong your healing time. If you truly smell poop, you have a leak to some extent; otherwise, it's in your head.

It is painful. Take your pain meds, walk a little, rest, and eat well. Every day your pain should decrease.

Have someone else do a smell check on your bag to see if you really smell like poop.

Also, use M9 ostomy deodorant to decrease the odor when you open the bag.

It takes time to trust your bag that it can really hold in the shit smell, but it does!

Sometimes it takes time to find the right bag; there are lots of choices.

OK, first off, it's only been five days! You just had major abdominal surgery! When I got my colostomy, I was in the hospital for a full week, and I remember the pain being intense, and sleeping practically impossible. If you aren't still on pain meds, get some. Sleeping on your stomach doesn't have to be out either. There is a thing called a pregnancy pillow that people use for visiting chiropractors, physiotherapists, etc., for treatments that require them to lie on their stomachs. I know you can order them online, so do some research. It's basically just a pillow with a big hole in the middle.

Getting used to the various products and finding the right system for you will take time, period. You do need to be patient on this one, and it will be trial and error, but you will find what works, and it will be worth it. You might actually be lucky and find a combination that works well quickly...or not. Try different brands of pouches, and one-piece versus two-piece, as not everyone likes the same system. You may not need a barrier ring with a colostomy, but trying them out is a good idea, as they could increase your wear time.

The smell is almost certainly in your mind because if there was an actual smell, it would mean you were leaking, and you would know about it right away. I tuck the end of my pouch into the waistband of my panties, so there is no feeling of something hanging between my legs. You could also try using an ostomy belt for extra security. It's a personal thing. Some wear them, and some don't. I've never heard of anyone complaining about NOT having mucus coming from their bum! Don't worry, it will come, but it may be intermittent and infrequent; mine is.

You haven't mentioned leaking, which is usually the first thing people complain about, so I'm thinking you are probably doing a lot better than you are giving yourself credit for. Hang in there. It's VERY early days.

Terry

p.s. As for cooking and cleaning, give it a rest. You shouldn't be doing anything very physical at all at this stage, no heavy lifting, pulling, etc. You are at high risk for hernia. Walking is the best exercise right now.

5 days! That's great!

Try Tylenol for pain. Take it every 6 hours like clockwork. It's better to get ahead of it than let the pain build up. This early on, you might need a stronger pain reliever, but it's best to minimize that since it tends to be constipating.

I had a more drastic surgery, and it was 6 weeks to 2 months before I stopped taking Tylenol. You may not need it as long as I did, but I'm hoping that will help you relax. The Tylenol pretty much controlled my pain, though.

You've received some good advice about the bag. Mine are so high, I don't have that problem, so I can't add much.

Start with 1 system. If you have problems or things you don't like about that system, try something else. Once you have something that works for you, stick with it. You can experiment with other systems and brands later after you are less overwhelmed. It's a bit overwhelming in the beginning, and too much variety can make it worse.

Definitely get all the samples you can and just hold them aside in case you have problems and need to try something else.

PS The sounds are something else, aren't they? I think these get better, but maybe I just got used to them. I did notice that, out in a restaurant, I had some noise, but no one could hear it (not even my husband sitting right next to me; I felt the gas pass but didn't really hear it). The background noises of the restaurant drowned out the sounds.

My Ostomy Journey: LeeAnne | Hollister

Hello, I have a sigmoid colostomy. A little over 12 inches of mine was removed due to punctures. I'm at 25 months post-op and use a Hollister 2-piece system with long and short bags. A 2-piece system means the bags snap onto the wafer. In a 1-piece system, the wafer and bag are one. I like being able to change bags in less than a minute. Around the house, I wear a small bag. Outside, I wear the long one. I've never had a leak or bag blowout. I use a moldable barrier ring under my wafer. This helps to cushion my stoma from the support belt I wear. Many ostomates use a barrier ring to help maintain a leakproof seal around the stoma.

It's early days. Be... dare I say it... patient. You're going to have pain. Don't push yourself. I did... and fell twice. Lucky I didn't break anything. It takes about 4 months to heal and for your body to adapt to its new normal. Your stoma will shrink a little during healing.

Be careful about coughing and sneezing. It's easy to develop a parastomal hernia. Do not lift anything. You should consider wearing a support belt. No one mentioned this to me... and at 4 months post-op... I developed the hernia. I now wear a belt all the time. I only take it off to shower or change the wafer. So far, my hernia remains mild. So, a belt works for me. I use Nu-Hope Corporation belts.

Poop smell? Funky noises? Wait until you heal to worry about that. You're in the learning phase now. Discovering what wafers and bags work best for you... Learning about barrier rings, peristomal skin care, and eventually... mucus.

If you have a rectal stump, it's a possibility you will expel mucus from... your friend and mine... the anus. Mucus is produced to help stool smoothly complete its journey through the colon to the toilet bowl. Since stool will no longer pass through your rectum, mucus will build up and then be expelled. Sometimes mucus will dry out and cause discomfort and pain... and be difficult to poop out. If this happens, visit your doctor for consultation.

Get used to poop. You're going to deal with it every day. It's not gross. Just a part of life. I have to rearrange poop in my bag all the time. Otherwise, I'd have a big lump. Emptying the bag... sometimes I hurry too much. And occasionally get poop on my fingers, thighs, and Mr. penis. No big deal.

Gas. Yep... you will get gas. Your bag will sometimes resemble a Zeppelin. So you gotta burp it. A 2-piece system is easy. Unsnap the flange top, gently squeeze the bag... hold your breath. Snap the flange shut. I go to my backyard to do it... my wife insists.

Good luck and be patient.

Oxycodone is usually prescribed. Were you?

That will put you in a happy place and calm you down.

And yes, it can cause you to sleep. Sleep is an often overlooked remedy.

Hi Jen, welcome to the site. They make a wrap/belt for wearing the pouch sideways; I'm not sure of the name of it, but the sooner you get a support belt, the less chance there is of a hernia. As for sleeping, I got one of those long body pillows that kept me from rolling onto my pouch.

Try out the different products your ostomy nurse has gotten for you; maybe one will work better for you than another. Some you can tuck up the bottom of the pouch inside the back part of the bag; maybe that would make you feel less like you have something hanging down between your legs. Are you wearing a high-volume bag? If so, that will change with time. The pain will also subside in time. I had a lot of pain initially, and I actually had to learn to walk again because, with my initial surgery, they took out most of my large intestines and cut me wide open. That was a lot of pain. It's okay that you aren't doing cooking and cleaning right now. Give yourself time to heal. You can't expect to go right back to how things were before your surgery. Take some time for yourself. If you don't have pain meds, ask for some. And take them when you need them. No sense in trying to brave the pain when you can do something about it.

Hi

At 5 days, I was still in the hospital mainlining Fentanyl, and my stoma nurse was popping in each day and helping me get familiar with changing my bag, etc.

Are you still in the hospital? I'm guessing you must be on your feet if you say the bag is hanging down.

Lots of good advice has already been given here. Hope you feel better soon 🤗

I want to thank all of you for the helpful advice and the outreach of support. I can't find the words to describe how I feel other than very appreciative.

An update to my last post: On Sunday of last week, I returned to the ED because of the pain. The on-duty surgeon ordered a CT and ultimately re-admitted me for pain control. I had some amazing nurses who shared personal experiences with ostomy care and offered me some pro tips! They put me on a number of different meds around the clock for the pain. After a couple of days, they weaned me off of IV heavy-duty stuff and gave me oral oxy.

I'm happy to report that I'm back home with a better pain care plan. Still in a lot of pain, but as most of you have suggested, I'm wearing the ostomy belt. It has definitely helped with better 💤.

Many thanks and virtual hugs to all of you for your kind and thoughtful responses.