Living with a Colostomy - Struggling to Maintain Social Life

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390
y.holden72
Mar 29, 2024 3:36 pm

Fed up, feeling down, and yes, I am lucky to be alive, but I feel I have sort of stopped living. I turn so many outings down with friends because of my colostomy, worried about accidents, worried about what toilets are going to be like. I am okay at work mainly because I work from home, but my social life is zero, and I have never really felt depressed, but I am quite a lot these days.

warrior
Mar 29, 2024 4:05 pm

Welcome. Hey now... don't you worry... we have all been where you are now, so we get it.

You just sit tight for others to chime in.

It is normal to have these feelings, which will pass in time.

You have your youth going for you too, which is a plus healing-wise. We just gotta get your head on track.

Having a bag is not world-ending. You are in the early stages of this, and soon you will learn the tricks to make your days less worrisome...

Do you have a stoma nurse? A good friend you can talk to?

We will help be here 24-7... just ask and answer. Vent... share... it's just a bump in the road. We all have been there... wasted all that energy too... and learned what works and what does not.

Feel blessed. You are alive. Nothing should stop you from living.

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First off, this is a pretty cool site with 37,000 members who truly understand you.

It's not all about ostomy. We talk about everything.

Many come here for advice or to give advice, others have found good friends, and some have even found love. Most importantly, people here are honest and genuinely care.

🛑 Privacy is very important - we have many features that are only visible to members, ensuring a safe and secure environment for you to share and connect.

Create an account and you will be amazed by the warmth of this community.

JVM261
Mar 29, 2024 4:13 pm

I hear you. We are here.

Bill
Mar 29, 2024 7:28 pm

Hello Y.Holden72.
I totally agree with Warrior on this one, but can quite understand how you are feeling and why. 

I think that many of us have been through recurring bouts of depression and the feeling of loss for the sort of life we led before the stoma. 
Indeed, the trauma of having any type of surgery can bring about these feelings and sometimes it is the social and psychological aspects that turn out to be the hardest to cope with.
If you don't have an understanding professional or friend to talk to, then I would urge you to seek some professional counselling to focus on this aspect.
If you are able to discuss your feelings about depression with your GP the they 'might' refer you to have a course of counselling. However, many medical doctors don't have much of a clue about psychological issues and think the answer lies primarily (or entirely) in prescribing medication.  Be very wary of this approach, as it can be a temporary prop that may too easily turn into an addiction. The 'talking' cure (or rather the 'listening' cure) is much more likely to put you on the right track for managing this side of stoma management. 
A site like this can be helpful in that regard for many people, including myself so hopefully you will continue to converse with us, so that we can listen with empathy and understanding, based on similar practical experiences.

Best wishes
Bill 

7dragonflies.hm
Mar 29, 2024 9:57 pm

Completely understandable. The ups and downs, at times more downs than ups. Through my journey, I've realized that as much as I want to try to rush anything and get better or be fixed, it does no good. It only makes me more anxious or upset. So, try to just go with the flow. Eventually, you'll get fed up with being fed up and realize that you indeed CAN do this and decide that you're going to take your life back and enjoy it. Don't let this get you. There's a quote by Helen Keller: "I cried because I had no shoes until I met a man who had no feet." That spoke volumes to me. I'm not trying to undermine your feelings at all, and I hope it doesn't come across that way. We all have certainly been there and still have those moments. I just wanted to encourage you and remind you that we only go around once. Don't let this take that from you. You deserve happiness. Allow yourself to have it and don't worry too much about the what-ifs that might never happen. ❤️ Hugs

Heather

 

How to Manage Emotions with LeeAnne Hayden | Hollister

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eefyjig
Mar 29, 2024 10:27 pm

You've come to the right place to vent. A lot of people put all their faith in a reversal. Like a relationship, job, or any other life goal, it can feel devastating when it fails. We go through the stages of grief and hopefully reach acceptance. Remember, your ostomy does not define you; it's simply a piece of you. No one even has to know you have one if you don't want them to know. Working remotely can be a perk to any job and have a lot of benefits, but maybe it's adding to your feelings of isolation? I'm a homebody, but I know it doesn't help me when I'm feeling down, scared, or anxious. This is just a suggestion, but it could help to get out more, among people even if you're not “with” them, just among them. See how they are absolutely clueless about your ostomy. It can even help YOU gradually accept it. I'm sorry you feel so sad and hope you find relief soon. You are among people here who understand.

Jayne
Mar 30, 2024 1:25 am

Hello Y. Holden72

I agree with what has been said on here so far in reply to your post.

We are dealt a tough hand, but somehow we are also given the strength to play our cards and stay in the game...

Don't give up. You have come to the right place. We are all here for you, sending good vibes and positive support...

Hang in, and with time and gentle focus, the sun will shine.

 

Best wishes,

Jayne

 

Beachboy
Mar 30, 2024 6:59 am

Hello,

I've had a colostomy for a year and a half. I suffered no leaks or accidents. At first, it was a hassle to take care of. But, a couple of months with it... and you become a pro at wafer (baseplate) and bag changes. It only smells when you take the bag off. I'm a small guy. My stoma sticks out quite a bit, no way to hide it. I don't like it... but don't obsess about it. You will get used to it. It is no big deal. Your output will be thicker, non-acidic, and far less prone to leakage. I eat what I want... just chew very well.

I went back to work 3 weeks after 7 hours of exploratory surgery resulting in a colostomy. No one cared about my new shirt bulge.

I was emotionally trashed after my long hospital stay and ostomy. But I put one foot in front of the other, carried on, and persevered.

Many people on this website have gone through medical hell, yet they push forward and live the best life they can. The best therapy is talking about it. Voicing your fears. We've been there. I gain strength from the courage of my ostomate friends here.

Good luck

aTraveler
Mar 30, 2024 8:26 am

Your best bet is to tackle the challenge head-on. You have a colostomy, so you should more easily be able to prevent leaks. Try products from different vendors; that is, try pouches and baseplates/barriers/flanges from ConvaTec, Hollister, and/or Coloplast. Two-piece vs. one-piece baseplate and open vs. closed pouch. I use closed pouches for the flexibility they provide me—snap one off and snap another one on. My insurance company pays for 60 pouches/month. You can change the pouch anywhere, even in a car parked in a parking garage. You don't need a toilet; therefore, that worry goes away. Since I use closed pouches, I am using a two-piece system. You also must decide whether you want pre-cut, cut-to-fit, or moldable baseplates. Pre-cut can be more challenging with a new stoma because the stoma will usually shrink in size, therefore making any remaining baseplates useless. Cut-to-fit is a better option until your stoma has settled down. I prefer moldable because it hugs the stoma and requires no precutting. I started moldable in the hospital and never changed because of the convenience it provides. You must also decide between a mechanically coupled (snap-on) baseplate or an adhesive coupled baseplate. The snap-on works fine but sticks out more—consider an accordion snap-on because it is easier to snap on without pressing on your stomach. I have a fetish about cleaning the baseplate when I change a bag, and the snap-on has a cavity within it that collects stool, leading to a longer cleanup time. I love the adhesive coupled baseplate because it is flatter like a one-piece and easy to pull the pouch off and replace with another pouch. It is also much easier to clean the adhesive baseplate when changing the pouch. I have a bit of a cavity/groove around my stoma, and since my stoma only sticks up about a half inch, I use a convex, moldable, adhesive baseplate. Whether I am using a flat or convex baseplate, I use an Eakin ring (slim) around my stoma and below the baseplate. I have tried several silicone barrier rings; they don't leave as much residue as the Eakin but also don't adhere as well. I have successfully used flat and convex barriers in combination with mechanically and adhesively coupled baseplates. I don't have to worry about leaks or using toilets. I have provided all the details above to show you what considerations to take. Every configuration I tried was using free samples. These evaluations are necessary in order to determine what combination of products works best for you. Hard work upfront provides you the opportunity to re-engage your social life without worrying about stoma leaks.

Jayne
Apr 01, 2024 11:55 pm

Hello, again, Y. Holden72,

 

Good advice....

 

Self-help can be the best - especially if one is prepared to try all the options - for others' choices are not the same as one's own experience.

 

Good luck - take onboard the advice above - for those best prepared to do the research will likely be rewarded with the knowledge of the best options - which, incidentally, as has been suggested, can change over time - so always be prepared to re-evaluate.

 

Patience is important too - and should not be overlooked - a quick fix at the expense of continuing your research may not always facilitate the best result.

 

BW

 

Jayne