Coping with Emotions After Stoma Surgery

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907
Past Member
Jun 29, 2022 5:36 pm

How did you cope with your emotions after having a stoma?

AlexT
Jun 29, 2022 5:46 pm

I don't really have any emotions about it. I either got my ostomy and had the cancer cut out of me or I'd be pooping my pants 30 times a day until the cancer killed me. The thing that will help you the most, or what helped me the most anyway, was getting on with things and living life. Sitting in the house and doing nothing is brutal on your mind and emotions. You're still very early in having your stoma, take it easy but do something every day and add to it every day after that.

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mild_mannered_super_hero
Jun 29, 2022 5:47 pm

When I first got my ostomy, I only knew one other person who had one. He was about my age and he was a jogger.... I used to see him out jogging and think..... what another man can do, I can do as good or better.
This forum has many members.... All of them have had to learn to master their situation, you can too.

Mayoman
Jun 29, 2022 7:52 pm

Hi and welcome to the home of your new best friends. One day at a time is the only way to take it! It takes a while for your remaining intestines to adjust to the new reality. Ups and downs will come and go and your particular stoma will have its own habits and you will learn how to read it.

You are alive and well and that's what counts.

All the best...Magoo

Past Member
Jun 29, 2022 7:59 pm
Reply to AlexT

Oh yeah, I do see an improvement since having my stoma. It's just like a rollercoaster at the moment. I think because it's still very new, things that seemed normal and simple before, for example going to the local shop, seem like a massive chore at the minute. I am anxious about doing so.

 
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Bill
Jun 29, 2022 8:21 pm

Hello Ashtonleiigh.

This is a relatively easy question to answer. I wrote (and write) rhyming verse on anything and everything that touches my emotions in any way. The rhymes concerning stomas are all available on this site in the 'collections' section.

We each find our own way through the initial phases and hopefully onwards towards adjustment and our new 'normality'. 

This is a great site to help in that process but ultimately the journey is one that we have to make for ourselves. 

I do hope yours is a painless one and sufficiently educational  for you to continue corresponding in future with others who will no doubt have similar questions, anxieties and experiences. 

Best wishes

Bill

AlexT
Jun 29, 2022 8:36 pm
Reply to Anonymous

Then there's the goal for sometime this week....get yourself to whatever shop, spend about 30 minutes there or more if you're up to it and enjoy. The faster you get back to your new "normal" life, the faster your stoma/bag becomes part of your life and you aren't living your life around your stoma. We'll all be expecting to see some pictures of whatever shop you go to and hear about it.....no pressure. Have a good one and smile, life is better now (you just don't know it yet).

TerryLT
Jun 29, 2022 9:34 pm

Hi Ashton, I think it's pretty normal to have your emotions all over the place after a life-changing surgery. The impact is going to be both physical and emotional. I think it must be especially tough for someone as young as you are. Having a good support system will help you cope, and this group can be part of that. Remember, we have all gone through what you are going through, and we are all here to support you in any way we can. I hope you have close friends and family that you can go to for support. You may find it hard at first to confide in someone who has not experienced what you have, but it could be really helpful in your journey. It took me some time, and there are still people in my life who don't know I have an ostomy, and that is fine. But, I found that many people that I have confided in have been so much more accepting than I expected. Allow yourself time to heal and accept your new reality. Don't expect too much from yourself right now Ashton. Give yourself a break! Let those emotions come. Cry if you feel like crying. It can be very cathartic. You will get through it and things will get better.


Terry

Chaz88
Jun 29, 2022 10:02 pm

Hey ya, Ashtonleigh!

Great question, for me the emotional side was the hardest part. You don't realize it, but a lot of our serotonin receptors are in our bowels, for whatever reason. This is why some people eat to make themselves feel better. I say this to point out that some of the more negative emotions aren't "you" and it will get better as your newly agitated bowels calm down. As well, your body will begin to absorb more water earlier in your GI tract, as if it knows the colon isn't there to pick up the slack (absorb that excess water). This will thicken up/consolidate and you will find things to occupy your mind once things become routine.

If you're anything like me, everything is so new for you still, that your brain kind of goes through decision fatigue and it makes things trickier than they will eventually become. This is harder, I believe, if you were particularly athletic/sporty. This whole thing is such a disruption that it sorta affects your identity/image. The fact that you're already naming your stoma and came to this site as quick as you did makes me think you're gonna be just fine. I went about this without support fresh out of the military and it was hell. Honestly, if you can spare the cash, sign yourself up for some therapy or at the very least treat yourself to some psilocybin, as I eventually learned to do. If you've been through these kinds of surgeries I'd say you've earned it and besides, who doesn't deserve to feel good about themselves, right? I was so, SO, opposed to both of these treatments for so long that I'm too embarrassed to say. I try not to think with regret, but these two things together are definitely something I wish I'd participated in sooner.

Anyway, as I said the emotional part was the hardest for me because we can all work out our own routines and come up with mechanical hacks to make life physically easier, like ostomy belts, etc. I even put two smaller mattresses together with a thick foam divider between them. Then, I cut just one 6" block out of the divider and now I can lay on my side or stomach while the bag drains. The bag never even touches me as I sleep. But still, remember to be patient with yourself, keep as much of a routine as you can (at least for now), and stay away from the more inflammatory foods (again, at least for now). This will help with the "windiness" and any burning you might feel.

Truly, best of luck to ya,
Chaz W.

elledubuque
Jun 30, 2022 12:59 am

Hi Ashtonleigh,

Yes, it feels very rollercoastery for sure. I have days where I feel like I have got this and it's no big deal, and then an evening of lots of crying because I had two leaks in one day and I still wasn't 100% sure how to change my bag as I was so fresh from the hospital. It also didn't help I got my period too.

The things I have come to realize that really help me are:

Feeling my feelings when they are there and working through them. I have been a feeling stuffer my whole life and I have finally realized that crying for 30 minutes and getting it all out is a lot more empowering for me than just telling myself to suck it up because I can't change it. Letting the feels out gives me the clarity of mind to shift into practical mode.

Reading / Posting here and on Veganostemy when I need help or have a helpful thing I have figured out. I try to make sure that I am sharing good tips and helping just as much as I am asking for support. It makes me feel like I am a supportive member of the community.

Finding clothes that work! I was seriously bummed when I tried my clothes on - not only have I lost 30 lbs, but my pants were hitting in the wrong place. I went out today for the first time in weeks and received compliments on my outfit... not only did it feel good to get dressed, it was nice to be noticed for looking cute in my high waisted denim skirt and cowboy boots. The lady who was so nice to me literally had no idea I have a poo bag plastered to my tummy.

Connecting with your friends / partner. I did not want any friends coming to see me in the hospital or when I first got home. Luckily a couple of my closest friends lovingly forced their way into my home and it did feel so good to see them.

Figure out those things you really do need help with and ask. For me one of them was what can I eat... my bestie helped me get some meal plans together and even had Whole Foods deliver the groceries to my house.

My partner has been awesome, and we have been doing "emotional checks" with each other which has been really helpful. The rules are basic, just ask "How are you feeling" and then listen... no need to problem solve unless it is asked for. It is just more so about connecting.

Standing up for myself and how I am feeling. Sometimes when you are down people will say the old "Look on the bright side" advice which can really diminish your real feelings. I finally got to the point of being able to tell my partner, friends, and parents things like "Yes, I understand I am lucky that they were able to isolate and remove the cancer from my colon, but this is still a very scary path for me. I literally have an open wound on my stomach and I am scared I will do something wrong and end up back in the hospital."

HOPE THIS HELPS!

Elle D.

Axl
Jun 30, 2022 2:19 am

Hi Ash

You are no different to anyone else, as time goes by the good stuff will increase and the negative will diminish. You are still brand new, if you weren't somewhat emotional at this stage something would be wrong. I only know one other with a stoma and I have only bumped into her twice in 5 years ...... it is a lonely road no matter how attentive people and family are but the good stuff will come to you if you let it, it's just a matter of time you'll see.

AlexT
Jun 30, 2022 2:29 am
Reply to Axl

Yep. I knew 2 people with ostomy. 1 was a coworker that got sick with basically the same thing I had and he just passed away. The other guy is a family friend and he got his roughly the same time as me. Otherwise, I just look weird looking at everyone's waist to see if they have super powers like us or they're just mere mortals.

ron in mich
Jun 30, 2022 1:46 pm

Hi Ashton, what everyone said is true. The emotional ups and downs and frustrations, but once you can get away from any leak issues and gain confidence and control, the "why me" and frustration will subside. For me, it was anger that I couldn't do what I was used to, but eventually, my health came back and the ostomy was secondary to living my life.

gkjohnson
Jul 03, 2022 7:35 pm

I remember experiencing frustration, anger, and anxiety, all accompanied with great relief. Your ostomy is very new, and it will take some time to get used to it and for you to realize what your new life will be like! I also remember about five weeks after surgery, I attended a golf tournament and was able to walk around for two or three hours without a problem, just as long as I kept well hydrated! You have a new journey ahead of you, and you have a whole group of people that have gone before you, and we are here to help! Also, cheer you on!

Mayoman
Jul 03, 2022 9:46 pm
Reply to Chaz88

Hi guys, that is something many people don't know about serotonin and its close relationship with the colon. Depression, to some degree, goes hand in hand with removal of the colon. That emotional rollercoaster continues for quite a while, so you have to learn to roll with the punches until your body and brain adjust to the new reality.

I had a full-length belly wound for nine months after a very serious infection. I went home with this and had to shower with it open twice a day to debride and clean the wound. I think this distracted me from some of the emotional baggage we all have to deal with.

You alone are the one on this rollercoaster, so don't really expect people to really get it... they don't, no matter how you try to explain. Even among ostomates, there are huge differences in the emotional impact. Ongoing worries about cancer recurring or Crohn's attacking the remaining small intestine, etc., etc... I know it's a cliche, but just take it one day at a time. Sunshine and fresh air are very helpful with your moods, so get outside and enjoy nature as soon as possible.

Magoo

giantbadger74
Jul 04, 2022 7:17 am

The hardest thing for me was the impact on body image. Because the stoma is something I couldn't change, I decided to focus on something I could change, so I took to lifting weights with a vengeance and decided to update myself with reliable sources of information (which rules out about 99.99% of what you see on the internet, Instagram, etc.). That may not be everyone's cup of tea, plus some people are concerned about hernia risk (besides the advice on no heavy lifting for an initial period, I haven't seen any reliable advice on the longer-term picture, so I don't know what, if any, risk there is on this).

I also found it deeply frustrating that the bags I was given by the hospital just didn't work for me, and I'd find myself going through multiple bags a day due to leaks. I managed to get that under control by getting a bunch of samples from different manufacturers until I found a combination that actually worked for me.

southernsam
Jul 04, 2022 1:21 pm
Reply to Anonymous

Things will get easier!! Soon you'll look back on this time and laugh to yourself! I remember when I first got my ileostomy I never thought I'd be able to put it on standing up..I looked at that nurse in my hospital bed like she was on drugs! Now, it's like it's not there! I have challenges, but that's not one of them! Love yourself my friend...take a deep breath...you got this!

southernsam
Jul 04, 2022 1:22 pm
Reply to Anonymous

Things will get easier!! Soon you'll look back on this time and laugh to yourself! I remember when I first got my ileostomy I never thought I'd be able to put it on standing up..I looked at that nurse in my hospital bed like she was on drugs! Now, it's like it's not there! I have challenges, but that's not one of them! Love yourself my friend...take a deep breath...you got this!

Marilyn Flowers
Jul 05, 2022 7:47 pm

Hi, I got my ostomy when I was 15 (58) years ago. Right after the surgery, I felt better than I had for 2 1/2 years of ulcerative colitis that kept me out of school for almost a year. I did have issues as a teenager and young adult back in the 60's as no one I knew had ever heard of an ostomy, and in my hometown of Albuquerque, there was no such thing as an ostomy nurse. I did whatever I could to be healthy and ended up doing cross-country ski marathons and climbing 10 14,000 ft peaks. I was able to do a lot and be healthy for many years. It's not a fun thing, but I try to move on and not think about much. Best to you.

TerryLT
Jul 05, 2022 9:18 pm
Reply to Mayoman

Hi Eamon, I did not know about the close relationship between serotonin and the colon, but somehow it doesn't surprise me! From all those years I spent suffering from chronic constipation, I'm only too aware that if you are not having a good 'bowel' day, you are not having a good day. It affects your mood like nothing else. Conversely, when things are moving well, you feel on top of the world!

Terry

JennT
Jul 24, 2022 12:07 pm
Reply to AlexT

I'm almost 3 weeks out with my ileostomy. I needed to hear your advice. "Do something every day". I've been really bummed being in the house. On top of it, I'm 5 months out of 2 total knee replacements. I'm going to try it! Thanks!