Body image and coming to terms with a permanent/temporary stoma

The following comments are from some wonderful  people who agreed for me to publish them so that they could tell everyone how life with a stoma is for them, they belong to a group on Facebook called ” Making ostomies cool”. I have then added my own thoughts on body image. I have also added a gallery to my website featuring some of the following.

” I have had my bag for almost 10 years, have had two babies with it ( I am a mom of five), met the love of my life with it….I definitely will always struggle with my self confidence but I am learning. This is the second photo i have ever taken and shown with my bag. I just want people to know you can be sexy, feminine, masculine or whatever you want. The bag doesn’t define you.” Sheri

 

 

 

” I cried my eyes out, even though I’d had years of knowing it could happen one day. When I saw it for the first time it was no better truth behind my smile, I hate it ” Melanie

 

” I adore my stoma. It has given me a chance to start living in ways I didn’t think possible. I have had crohns for 10 years and other health problems too so never had the chance to have friends or have sleepovers. Missed most of my education due to this horrid disease. Now I have my bag I couldn’t be happier tbh, Iv’e never felt so attractive.” Rebecca

 

” I don’t mind my stoma, I hate my body. I have lost so much weight, gone from 9st 6lbs to 5st 4lbs.” Lynda

 

 

” I am quite open about my stoma and how much I hate it, but this photo is probably when I felt most confident, was a night out for my friends birthday.”

Hayley

 

” I  had my stoma op on the 30/03/2017 and it is all good as I was in pain 24/7, and I am not in pain as much now so I don’t mind my stoma as I feel better day by day” Joe

 

“I love my stoma, it saved my life 3 times. Although for some,a stoma can alleviate symptoms and give the person their life back after many years of suffering, where as for me, my health has only declined since my original stoma surgery 4 years ago.” Robyn

 

I love my Stoma it’s given me my life back but I do not like to see myself naked. I’m not the slimmest of people and the medication I take keeps me fat. I have a high Stoma so I the bag when out and unless I tell people nobody knows I have one” Sue

 

” I have my life since my stoma.Even when I have issues, still wouldn’t do back” Krista

I got my life back. It was planned surgery due to Crohns Colitis. I suffered terrible continence issues for years, recurring perianal abscesses and fistula which refused to clear, despite Seton drains being stitched in. I had my Colostomy in January 2010 and by November 2011, the abscesses cleared, the last drain was removed and the fistula plugged. The photo is taken on board Ventura for our daughter’s wedding October last year. It was an amazing experience and I would have had to miss it if I hadn’t had my Colostomy.”

Hazel 

 

 

“I told my surgeon I’d rather die than have a stoma. Then the first time I saw it after surgery I cried and told the nurses I hated that they’d given me a slimy red penis thing sticking out my tummy, I was only diagnosed with UC ten days before surgery. The day before I found out I needed surgery I was told by a different consultant that I’d avoided surgery. Then my usual consultant told me the following day that if I didn’t have surgery in the next 24 hours I’d be dead in 48 😔 Was a bit of a whirlwind” Hayley

 

” Hated it mines was emergency surgery but getting there now x” Karen

” I hated my colostomy. Refused to look at it. Then after 6 yrs I got used to Stan. Now I have a Ileostomy and hate it lol. Have asked surgeon if my reversal doesn’t work can I please have a Colostomy again lol.
I had mine because of radiotherapy damage, so it was a shock. Hubby has been nothing but supportive, it’s me who gets embarrassed when it farts etc.”Mary Anne

“I’m pretty confident with my stoma. I never really experienced any body image issues that had to do with my stoma (who is named mt. Vesuvius, icky Vicky for short). The way I see it, my body is the way doctors made it. I had no say in the matter. Why should I feel bad for something I had no control over? It also helps that I’ve never given a flying fuck what other people think of me. It’s like they say, “you can be the ripest, juiciest peach in the world and there will still be someone who doesn’t like peaches” so I wear my bag out all of the time. If someone asks me about my bag then I have no problem answering their questions. It’s better that it happens to me than someone else with a bag who may not feel so comfortable with talking about it. I think of it as me doing my little part to raise awareness.
Feel free to use my name and pic. ”

 

Haylee 

 

 

 

“Mine was emergency but I’ve learned to embrace it and raise awareness for IBD and ostomy life”

Leelo

 

” I love mine! Had to be told about it four times (it was emergency surgery for septic shock so they only told me after the fact, and being on sedation in ICU meant I kept forgetting). I think it’s cute though and my scars make my tummy soft. I hated my body before but it seems wrong now for me to hate something I was so close to losing.”

Amy

 

“Here I am on holiday 😘” 

Linda

 

” I hated mine and still do. I wouldn’t deal with it for the first 3 months so my husband was the one who would clean it and do the bag changes. I’m finally doing it on my own now but i still hate having “Henry””Mary

 

“I was in the hospital for four weeks while they tried to save my colon. Then they came and told me they were going to have to remove it. I had no clue what it was all about. I just knew I was very sick and in extreme pain. I had a perforated colon, diverticulitis, and extremely inflammed colitis. I had colitis all my life and wasn’t diagnosed till now. Then one of my nurses told me she had an ileostomy. I was surprised. She was beautifuI, looked healthy, and didn’t seem to have any issues with it. It was because of her, that made me accept my fate immediately. I think the doctors were quite surprised when I told them “let’s get er done”. I never had an issue with it then and still don’t. Most of the time, I don’t even realize I have it. Gotta watch that. LOL I look at it as something I really needed to save my life. And that is quite okay. I’m single and if I was to ever be in a relationship again, he better be very accepting of it and I think many would anyway if they love you.” Wanda

 

“I suffered for 29 years with chronic constipation before having my iliosomy 8 months ago it is reversible but I am not having it reversed because now I am not in and of hospital every couple of weeks in pain through not having my bowels opened for weeks at a time then getting it stuck so hospital had to keep clearing me out I think if I had it reversed I would be back to square one I have my good days and my bad days but more good than bad xx” Lynda

 

“I hate mine and the condition I am in. 

 

“Do not let the bag stop you…. it came into your life so make it live your life.”

Celia

 

 

” I’m free when I’m riding.”

Tiffany

 

“I was looking at it thinking it my stoma equals life and not living in the bathroom then I’m all in!!! I thought I’ll deal with the rest as it comes. Meaning relationships, accidents, kids. I was 27 and didn’t have any of those then. I had almost died twice and didn’t care that I had a bag!” Shana

 

 

This is probably the most difficult hurdle of stoma surgery. Even if you had chance to talk about it before hand, it is not the same as actually having this thing protruding from your tummy that you actually poo from.

If you had emergency surgery you don’t even get much chance beforehand to get used to the idea. What you thought it might be like and what it is actually like is a million miles away. The shock can kick in months after surgery when you are suddenly alone with IT. You will go through  loss because yes you have lost a part of your body and it has been changed to something alien. There are the scars to contend with too, they can be very large and the shape of your tummy can alter dramatically. Will you be able to cope? will others think it gross? do I tell or do I not?

The thought of managing it on your own forever ( if permanent) or for many months (if temporary) is a very scary prospect. You don’t know if IT will behave at work or when you are out and about. You may have other complications that you are coping with at the same time.

Will your relationship with your partner change? will they find it hideous? You like to think that the answer would be no of course not if they love you, but I can assure you that I have seen posts on forums where the partners cannot cope with the idea of the stoma and the relationship fails. So in reality there has to be some post surgery counselling and I find it strange that this doesn’t happen.

For some people, they can cope because they see it as something that has made their life better, or saved their life, others cannot get their heads around that and need help with their thoughts.

Things you used to wear may not feel right anymore. I struggled for months with jeans as they felt like they pulled the stoma bag down. I can see mine protrude through some clothes and this does bother me, especially when the bag starts to fill. Some people may avoid swimwear altogether and might even decide not to go away at all because they feel their body is not good enough to show.

Counselling would help with this. They could help with the questions on body image and what your thoughts were when you first saw your stoma. It is good to talk to others too, especially the open ones who manage very well and don’t really care what people think. They can talk about why think that way and how they think that way. Some patients will avoid stoma surgery for years until they really are so ill that they have to have it, Avoidance to surgery and to even speaking about it is common. Things are slightly easier if the stoma is definitely temporary, as patients can then see light at the end of the tunnel and know they haven’t got to live forever like that.

Coping with the news that you need a stoma, or in some instances you woke up with one, can be so different for everyone. Why the surgery was performed in the first place, because it’s not all about IBD , can determine how you are able to adjust. Same for your age, not forgetting that young children have stomas too and their parents are the ones learning to cope.

You can rediscover your body after stoma surgery, it takes time and your whole life is revolving around this new body, but like everything in life, you get used to it, you may not totally like it or even accept it but it is there and only you can deal with it,

The awareness of stoma surgery has increased dramatically over the years with blogging and TV appearances by ostomates. The  #GetYourBellyOut campaign has a big impact on the way stomas are viewed now too, and all these things help people to see that their bodies are actually ok and nothing to be ashamed of. It doesn’t mean you want to be a stripper or belly dancer any time soon, but it does mean you don’t need to hide yourself away.

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