Struggling with Positivity 5 Weeks After Surgery

Hi everyone,

I had scheduled surgery on August 9th that had complications and led to an emergency surgery 10 days later, leaving me with what I hope is a temporary stoma. I'm now in week 5, but recovery hasn't been easy, having had 2 major surgeries so close together. I'm looking for advice on how to have a positive outlook and trying not to just focus on the negatives. I'm struggling to even leave the house with the worry that I'll leak and not be able to cope, as due to the placement of the stoma, I need help when changing the bag. Any help would be greatly appreciated.

I'm only 3 weeks post-op myself and for me, focusing on what I can do versus what I cannot do has been helpful. I also am trying to focus my attention on what I'm grateful for right now versus what I am lacking or missing. Try making a list of what you're grateful for today...I'm grateful for you being so brave to post this. Keep reaching out and don't isolate. You're not alone.

Thank you, I appreciate the advice.

Hi and welcome to the site…good on you for finding it so fast.  The help/information/support you will gain here is worth its weight in gold. 

I was exactly how you have just shared….here I found many helpful answers, camaraderie and humor. 

I’ve been a member for 3 years, an ileostomate for 4 years - yes, I certainly wish I would have found it immediately after surgery but so very thankful I finally found it when I did.  I truly believe it turned my troubled depression and situation into a more positive attitude, acceptance and confidence in my own decision making suitable for my own good.

The start of your journey will be rough, but in time, hopefully with the help of folks on here, and self determination you will find the road easier.  Reading about others in similar situations make you realize you are not alone.  I had a difficult time both physically and mentally until I found this place.  Sort of a coffee clutch for information gathering, support, and no judgement. 

WELCOME and hugs. jb

Hi Lor,

We've all been there, and I think those who've been at this for some time will tell you we were all way more concerned about leaks in public than we needed to be. If I could go back in time and give my new ostomate self some advice, I'd say not to let the worry of a leak or accident stop you from getting out and doing things. I think the best thing that could happen to new ostomates would be to actually have a leak or worse early on, rather than later. Because when you do, you'll realize most people around you don't give a crap (no pun intended), and having a leak while outside your home just isn't the end of the world. It's one reason I tell people to wear a belt, as it prevents leaks from becoming a catastrophe and gives you time to get back home and fix it. In 15 years, I've never changed my barrier when out and about because of a leak, and I never will. I just keep some tape in my car and a large towel... and if I spring a leak, I know the belt will keep my barrier against my body and allow me to clean up the area near the leak and apply tape to hold the edge of the barrier to my skin until I can get home to fix it. And the towel is for me to sit on while driving so in case the leak gets worse, it won't mess up my seat. There's nothing more embarrassing than having shit stains on your driver's seat. My next car will definitely have brown leather seats!

I know it's hard to wrap your head around the possible embarrassment that could result from a total disaster... but those almost never happen. And if it does, so what? Everyone has a bad day once in a while... so just expect that eventually your number will come up and it will be your turn. Then just fix it and get on with things. It'll be in the rearview mirror very quickly, and you'll probably be laughing about it in no time.

Oh... one more thing... wearing brown pants is never a bad idea for an ostomate! Just saying!

;O)

Getting Support in the Ostomy Community with LeeAnne Hayden | Hollister

Thank you I've been reading through all the threads and have noticed this site is so much more positive and helpful than others so I hope it will help 

Thank you, I know the day will come when I leak in public. I suppose the lack of control is what worries me most, but I truly appreciate all the advice.

w30bob ALWAYS has great advice... but I feel a little differently about the leak situation. I had a major blowout while in a restaurant... as a newbie, my equipment had no tape - only wax - as I didn't know any better at that time. Although it was mortifying, I was able to escape unnoticed but not unscathed! At least mentally - it was a setback for me.
An ostomate on here suggested always carrying a sweater or jacket for a quick cover-up - good advice. Also, as wBob suggested, a belt, which many wear - a bit too much bulk for me but may be great for you. What I will say is, after many experiences with equipment and supplies and my knowledge of such, my confidence grew. Today I feel more equipped to handle a leak than I did in the beginning. For example, change day in the past took 45 minutes - today, 4 minutes. I believe growth in confidence of how to handle a leak permits us to venture out in due time. Also, w30bob wears a cowboy hat - great cover-up if need be - for belly or face - just kidding, wBob, love ya! 🤦‍♀️jb

I'm using a Hollister one-piece bag that I mount two rings to: a moldable one first and a barrier one on top, as my stoma is below skin level. The stoma nurse hasn't mentioned tape to me yet, but I see quite a few on here refer to it.

I am also using one of the inch-thick elastic belts that clip onto the bag. I tried the wide support belts, but they all bunched up, and I felt the bunching caused a backup of output and forced a leak.

Hi:

You can use micropore tape (something like Tegaderm) or commercially available "barrier extenders." You might want to explore a convex flange, which will put a little more pressure on the rings and reduce the possibility of a leak. You can request free samples of stuff from various companies (i.e., Hollister, Convatec, Salts, etc.).

I know what you feel. I had life-saving emergency surgery about 19 months ago due to a perforated colon. I woke up with a permanent ileostomy. Also, I spent 3 months in the hospital and rehab center where I had to learn to walk and climb stairs before I would be permitted to return home. Needless to say, those were very long 3 months, and I was frequently a little despondent. What kept me going was the fact that I was alive and that things would get better. There were a few nurses who knew their stuff and helped with reducing leaks, blowouts, and all that fun stuff. I now have, in the car, a small bag with what I need for an emergency change. For a small leak, I just tape the flange back down and put paper toweling around the leak to mop up the liquid until I get home.

You will soon begin to find out what works and what doesn't. I didn't "experiment" with various products until well after a year from my surgery. You will find that some products work better than others or that you like better. Best of luck with all that. Please feel free to reach out if need be.

Thanks for the info. I suppose I'm so new to this, I'm just doing what the stoma nurse says to do. I'm not confident enough yet to try something new on my own, but I do like the sound of the tapes.

My first surgery was to finally, after 30 years of pain and complications due to endometriosis, remove the final pieces causing the problem, and it worked. I'm so grateful for that, just navigating the unexpected stoma while my bowel heals, and hopefully, I can have a reversal.

Do you have a colostomy or ileostomy?

A stoma should stick out at least 3/4 of an inch, 19 mm above the skin line.  A stoma below skin level will cause many problems.  Better to stick out too much, than too little.

I have a colostomy, 18 months post op.  Never had a leak, or any real problems.  I developed a mild parastomal hernia 4 months after surgery.  This is to be expected.  I wear a Nu-Hope hernia support all the time.  

At first.... NO one is happy with an ostomy.  It just takes time, and experience to become comfortable with an ostomy.

Good luck.

I have a ileostomy and because my tummy isn't flat and due to years of abdominal surgery it's in a valley almost like a belly button

Hi there,

First off, I want to welcome you and let you know that you are not alone. We have all been there when first starting out with leaks; it's normal. Soon, you will be on your way to becoming a pro. I read that you use two barrier rings. Is that right? Or are you using a barrier ring and extenders on the outside (that goes around the edge of your wafer)? If you're using two barrier rings, only use one. Having a stoma low and using two rings is going to cause you to leak. I am not trying to freak you out or anything; that's the last thing I want to do. I'm just trying to help you.

Even more reason the surgeon should have made the stoma stick farther out.

One ring is the moldable paste ring and the other is a flat thin seal ring using both to create a good seal as my stoma is in a dip as my tummy isn't flat. Using both has been great to stop leaks for me so far

Hi Lori, welcome to the site. If your setup works for you, then use it at least until you're all healed up and you've got the confidence to live your life. Then maybe experiment with other products. Good luck.

Thanks, Ron. I'm sure as everything settles, I'll need to change it up, but as what I'm doing now is working, I'm sticking with it. I'm more concerned about getting into a more positive mindset and having the courage to leave the house.

I'm with you about leaving the house. My surgery was July 9th, and I had a leak my first night home. Not confidence-boosting, but I did change to a convex bag, and that has worked for me. My first outing was to watch a 4-year-old's soccer practice outdoors, with the car nearby. A very low risk.
Next was a beer at a table near the door (my profile pic), and finally a restaurant just down the road. It certainly is a mind game as well as physical. Middle-of-the-night thoughts are the worst.
This site has been so helpful, hearing from people who have long histories of dealing with every circumstance. Brave and funny.
I wish you all the best!

Thanks for the words of encouragement. The middle-of-the-night stuff I relate to; I don't sleep well worrying about leaks, yet I am able to nap during the day with no issues. It's definitely a mind game.

And to be transparent, I am not an anxious person but now have an anxiety med if I can’t sleep. Usually the night before chemo or a scan, but sometimes “just because”. 

Hi, I have a stoma that also sits a bit below skin level. I have had a colostomy since 2009. I use a pouch from Hollister that has a super flexible, soft (but sticky) flange. It is drainable because... why not? I used closed at first. Also, it's not overly big, which I like; in fact, they call it mini, but it's just smaller than the average 11-12 inch pouch. Hollister will send you samples if you want to give it a try. The ordering code is HO88725. Best wishes.

You might want to try Coloplast Sensura Mio CONVEX light bags. My stoma is almost flush to my skin and I started using these with Brava moldable rings. I attach the ring to the bag before I put it on even tho the directions say put it on the skin

 Works better for me to be able to press them together tight before I put the bag on. I tried the convex bags that are star shaped and they leaked terrible and I never have leaks. 

Take 1 day at a time, go out a little and then more and more. I stayed home and recuperated for at least 6 to 7 weeks. My surgery was in 2008. I run regularly,  I show and train dogs, get sweaty and have no leak problems. My big jump was when I took a trip to South America in 2010. I worried a little changing my bag in my friend's house, but I  worried for nothing.  It was fine. Just know that it will take time to relax and don't be too hard on yourself. 

I had my lifesaving colostomy a year ago August. So called, "Temporary." Have not had the reversal due to other odd things.

Going out. I wait. Wait and wait until I feel most BM's have been expelled and the (I hate this more) anal discharge has...discharged.

I always keep a spare barrier ring, pouch, scissors and wipes in my purse. I also keep a pair of athletic, cheap leggings in my car.

Haven't needed to use any of my backups. Happy for that but knowing I am prepared for leaks, stoma or anus, helps me feel better about venturing out.

I do limit my time away, especially mornings and early afternoons.

Hi Lori,

In 2018, I made my first trip to Ireland. I dreaded the trip and nearly canceled it two days before leaving due to the unpredictability of my gut. Two years later, I had the surgery. Got a stomach with nothing left behind it. No regrets at all. Leaks, while they've happened, have been my fault. Three in four years. See some of my posts under SharkFan. They talk about carrying spare kits, practicing quick changes, and expecting the worst and being ready for it.

Six months from now, you'll wonder why you stressed about it. Keep in your mind that the worst that could happen before surgery is worse than what could happen with it.

You'll be fine. Reach out to me and the group whenever you need a boost.

Best of health,

Sharkfan

Thank you

I found the belt clearly wanted to be braces when it grew up! It kept climbing up and was uncomfortable. Either that or I’ve got a really fat bum! So I’ve got stoma knickers now and I wear them if I’m going out. 

I have had depression for half my life and I empathise. Depression will pass if you get the right treatment and I find it’s important to try to sit outside it and watch with compassion, if that makes sense. It’s your neurotransmitters having a wobbly, don’t add to it by thinking it’s your fault or that you can “pull yourself together “ like a pair of curtains. Don’t watch the news or read the papers, focus on beauty and comedies when you can. Lots of love to you. You are alive! 

Good morning, friend from Ireland.

I know exactly how you're feeling. I had a permanent colostomy in 2005 due to stage 3 rectal cancer. Doctors kept saying it was hemorrhoids, irritable bowel, or my colitis... it was not.

I was terribly ignored and dismissed by the medical system in Ontario, Canada.

I am a fighter - at 112 pounds and 5'2".

In 2011, my colostomy was changed to an ileostomy and my large bowel was removed. I'm 68 now and still fighting and leaking. I am fortunate enough to have coverage through my husband's work for the best supplies... and they work most of the time. Ostomy supply companies in Canada will send samples of anything you are interested in trying. I now use the Coloplast Mio Mini, concave/convex flange, closed pouch, with a Brava moldable ring around the stoma, Brava tapes around the flange. I also wear a 4" hernia belt. Yoga pants are what I am comfortable in. They hold everything in nicely.

It takes time to get back to yourself. Depression is normal after major operations. Antidepressants can help if you get the right one. You might need it for a while, or it might become part of your routine. It has been part of mine for a long time now.

I wish you the best. Give yourself some time. We all learn to live with what life gives us. We are alive and have to make the best of it.

Cheers, my dear!

I have traveled... and you will again if you enjoy it.

I'm curious... what's with all the correct single-word replies at the beginning and middle of this post?