One of the biggest challenges new ostomates face after surgery is dealing with an altered body image that can affect your confidence.
Having an ostomy is life-changing surgery, however, it does not need to stop you from living your life. It takes time to adapt and adjust to your stoma and different ostomates will be at different stages in this process. Some may have accepted it straight away and continue doing what they did before surgery but others may take a little while to find their confidence to do the things they did before.
From my own experience when I had low body confidence it impacted every area of my life. At times I didn’t leave my home, I couldn’t get intimate with my ex-partner, I pushed everybody away and I became depressed. It felt like a downward spiral that stemmed from how I viewed my body with a stoma. I realised I did not want to stay in this place; hating my body so I worked really hard on improving the way I viewed myself and finding ways to improve my self-esteem. In next week’s post I will write about ‘10 ways to help improve your body confidence with a stoma’. I will cover some of the techniques that I have used that have helped me view my body differently.
So to help write today’s post I thought it was important to not just have my view on body confidence with a stoma but to ask fellow ostomates ‘How they felt about their body with an ostomy?” I conducted a poll on Facebook where 260 people took part and this started a great discussion. Later on in this post, I will share the results and some examples of the comments I received (with their permission)
My Body, confidence with a stoma
In order to talk about my body confidence with a stoma I feel like I need to touch on how I felt about my body as a teenager (before I got ill):
My confidence in my body growing up was poor. I was very thin in my teens but I wanted to be thinner and curvier. When I did start to develop I thought my hips were too big and the way I spoke about my body to myself was horrific. I felt at the time everybody was trying to change their bodies, to look better and I guess like a sheep I joined in with society thinking my body was not good enough compared to peers and celebrities. The media does not help with this along with the fashion/beauty industry playing on the fact that ‘we are not good enough’ and need products or items to improve ourselves.
At the time I could not see what I was part of. A generation with negative body image and even if I became what I wanted to look like, I still don’t think it would have been good enough. This low body image seemed to seep out into every area of my life and I found my self-esteem and confidence as a teenager was low in everything.I believe this had a huge knock-on effect.
Roll on 15 years, I now have an ileostomy formed in 2012, my urostomy formed in 2015, 25+ operations and numerous hospital stays I feel like I have finally woken up! I look back at the ‘teenage Rachel’ and I wish I had appreciated my health more than I did instead of slating the way I looked.
It has taken ill health and all these surgeries on my body to realise how RESILIENT and PRECIOUS my body is! I have learnt to respect it because it is miracle that I am still here typing this now.
When I first had my ileostomy I struggled to accept this ‘thing’ on my tummy. I could see I was putting on weight and my pain was slightly better but I struggled with accepting it and liking my stoma. I was in a dark place with my ileostomy and at the time I had an SPC. I became quite isolated and very much had the ‘victim’ mentality. I was not yet at the place to realise what my ileostomy had given me. What did not help for me was my ileostomy had prolapsed a year after surgery and was about 8 inches long. Having a prolapse is difficult and can be painful adding to the overall‘dislike’ of my stoma. I had to have 8 full abdominal surgeries to fix the prolapse and they have all failed. This was a hard pill to swallow and being on the surgery rollercoaster. The day I was told they would not fix my surgery anymore was the day I realised I would have to accept this card I have been dealt with and try to live life to the fullest with my prolapse and stoma.
Another time that was significant in changing the way I viewed my body was in 2015 after a routine cystoscopy showed that the cells in my bladder had mutated and within 2 weeks I had to have another stoma formed (a urostomy) and my bladder removed. I remember looking in the mirror the night I was told the news thinking ‘How on earth will I cope with 2 stomas? To cut a long story short my surgery went well but I was admitted for 3 months due to complications (here is a Post I wrote about my urostomy surgery) I came out of the hospital and I started to see the miracle that was my urostomy and how awesome it was compared to my SPC. I generally had gratitude for this stoma and I was glad in a way that the cells had mutated. This was a new concept and in finding some gratitude for my urostomy It seeped over to gratitude for my ileostomy. Even with the prolapse, I started to remember what life was like before my stomas and something clicked...I decided I would no longer see myself as a ‘victim’ and instead see the miracle my stomas are and how they have saved my life. In changing the way I perceived my stomas allowed me to start loving my body again. I realised my scar and bags were beautiful because it shows how far I have come and that I would not be here without them. I worked hard saying affirmations daily in the mirror for example ‘I love my body’ and ‘I am grateful for my stomas and the life I lead'’ slowly I felt the confidence building.
I believe starting this blog and meeting other ostomates helped me build on this confidence more. I started to realise that my stoma bags really don’t need to hold me back. Even though my friends and family had been saying this for years, I had to come to this conclusion myself. I started putting myself out there more with pictures showing my bags and even partaking in a photo shoot for Jasmine Stacey Collection (you can read here) which I would never have done before my illness.
I can honestly say that through hard work and wanting to feel better about my body and stomas I am now more confident about my body than I ever was before I got ill. Yes, I have 2 bags, a stretched scar, a hernia and a prolapse but I embrace all flaws and imperfections because they are part of me.
Being close to death numerous times helps put life in perspective.
What is important to me now is living life to the fullest with my stomas and not allowing them to hold me back. Being open about my life and help empower other ostomates to find that acceptance and empowerment in themselves.
When I was younger I expected at 31 I would have my career in Radiotherapy, be married and have children. This did not go to plan and I do not have any of these things HOWEVER what I do have now is a deep sense of understanding of myself and the privilege of finding out how amazing my body is and my strength. I say privilege because this has allowed me to find new layers in myself and subsequently be the happiest and most content I have ever felt in my life.
I still get some days that are harder than others especially when the prolapse is being troublesome but I try not to stay in that place for too long. I try to list what I am grateful for which helps to not hold on to the bad day and to live one day at a time.
I truly see that my stomas are a gift that have given me back my life. In viewing them like this, I believe this has helped view my body differently.
Results from the poll
As mentioned earlier I run a poll on my Facebook page a few weeks ago asking:
“How do you feel about your body with an ostomy?”
260 people took part and the results were:
41% Good body confidence with a stoma
59% Low body confidence with a stoma
I felt quite sad when the results came in and started thinking what could change and what was available to help with body confidence with a stoma.
Some ideas I came up with were:
- Offering Councilling to ostomates post op as part of the rehabilitation process.
In 2017 a study was published: ‘Physchological adaption to alteration of body image among stoma patients. A descriptive study” that wanted to identify the factors that influence adaption to altered body image. 41 ostomy patients took part in a Body Image Disturbance Questionnaire (BIDQ) to assess the perception of body image. The study found that the body image disturbance was significantly associated with younger age ostomates and prevalence of body image disturbance was high among overweight patients and with a temporary stoma.
The findings were very interesting and I felt surprised that this study found poor adaption with the younger ostomates. The study was very small and more studies need to be done with a bigger selection but this study highlighted the importance of counselling before and after surgery.
In the future, it would be great to see that councilling or CBT can be offered as part of the rehabilitation process for every new ostomate. Not everybody will want it but knowing it is available may help ostomates who are struggling with accepting their stomas.
- Identification with other ostomates.
This is really important and for me, this was the best thing that happened to me when I found the online community. The online community is great but sometimes having that face to face identification is priceless and there are many support groups around the UK and charities available, for example:
Purple Wings Charity - provide grants to ostomates to help build confidence back up again.
- Spreading the awareness and breaking the stigmas associated with all stoma bags
Over the last 5 years, there has been an enormous influx of brave ostomates sharing their stories in the newspaper, online magazines, blogs and on tv. This helps not feel so alone and seeing some other ostomates being brave and baring all can help others have the permission to find the confidence in themselves.
I would like to say thank you to everybody that got involved who voted and left a comment. Here are some of the comments from ostomates with low body confidence with a stoma:
I will admit after 33 years I still hate it. The support and the acceptance just wasn’t there in the 80s and as a 13-year-old it virtually destroyed me. I was bullied at school and there was a lack of understanding from the teachers. Then there was Yeovil council who refused me to go swimming with a t-shirt on. Last year was the first time I went swimming (at Disneyland Paris) and with some help ignored the stares and pointing fingers. I know my stoma saved my life and I'm grateful for that but boy its has been a struggle. [Barry]
I struggle massively at the moment with my body confidence due to my parastomal hernia. I find it so difficult to find clothes to wear that have the right waistline. Now I have started to wear maternity clothes which makes me feel sad because I can’t have any more children. [Georgina]
Here are some of the comments of ostomates with good body confidence:
I see it this way if it wasn’t for those scars and my stoma I wouldn’t be here! It means life! If it wasn’t for the surgeries in this day and age we would have died, stoma represents life. [Janet]
My confidence is great, not only do I have a stoma but I also wear hearing aids and recently lost sight in my left eye (currently having bespoke lens made) I have been travelling all over the world with my ostomy and do not let it hold me back, this is ME! Love and accept me for who I am not what I am! [Julie]
I think everyone who becomes an ostomate struggles accepting ones body image. The first days after surgery is a challenge looking at your body in front of the mirror but as the days turn to weeks pass by you start becoming more used to it. For me I had no options since I had the surgery I knew I would be an ostomate for the rest of my life, and having many complications and having my body shape altered, it was difficult to accept. Once I realised that the best way was to accept the situation and make the most of it, things changed and I still keep thinking myself as a sexy lady I used to be. My husband says that nothing has changed for him, the bag hasn’t changed the love and desire he has for me. [Luciana]
Here are some of the comments from some ostomates who had low body confidence but now their confidence in their bodies is better:
There are some days I struggle with my body confidence. I was a gymnast when I was younger and was always thin and muscular. Even when I was sick with Crohn's I was still slim (too slim...like unhealthily scrawny) I had my emergency surgery 5 years ago and then a second permanent surgery three years ago. I have put on weight and I have to wear a support belt but I find I can’t wear as many clothes as I once did. However, none of those things have lessened my tremendous love for life or my appreciation for the surgeons that saved my life so I can watch my daughter grow up. So I don’t look the same in a bikini as I once did...that’s ok with me because I am here, I am healthy and my husband of 21 years still thinks I am sexy. I have done more physically in the last five years than the 20 previous years. We have travelled, camped, done yoga, ate new foods, bike, hiked, hit the gym. I love it all but I am most thankful for my amazing husband and daughter who have been my biggest supporters and always lift my confidence when it gets low. [Kelly]
I struggled at first when I got my ostomy and I have had lots of surgeries over the years to refashion my stoma. Recently last October I had to have emergency surgery, not my Crohns but on my gallbladder and for pancreatitis only to find I couldn't have a camera due to adhesions inside. The surgeon cut me open above my stoma area. 26 staples later I have been recovering slowly. I thought oh no not another scar but like the rest of them, it has saved my life. I'm looking forward to going away this year abroad, scars are nothing. Having Alfie my stoma is part of me and all my scar, I am glad to be alive [Pauline]
As a lifelong double ostomate, I had low body confidence for many years, partly because of myself but also how other people made me feel, even my first husband. It wasn’t until my late thirties that my confidence started to improve when I was on my own. I then met my husband and he is so different from my first husband in how he expected my stomas as part of the person he loved. I now have no problems with confidence in regards to my stomas [Janet]
For myself, the knowledge that I was to have a colostomy came completely out of the blue. I had sent off my 2 yearly bowel check in January 2016. Blood was detected and I went in to have a colonoscopy that discovered a cancerous polyp in the colon. I had an 8-hour operation in April but unfortunately, my stoma necrotised. 3 days later I was in theatre for a 5-hour operation to remove the offending part. I must admit I was pretty ill and lost over 3 stone as I was constantly sick. When allowed home I had a nurse that came in every day to tend to my bottom as it was not healing too well. Anyway, after a good 3 months, I was much stronger and set out living a normal life. In those 3 months of recovery, I had ample time to come to terms with this huge change in my life. Possibly because I was a nurse and have a fairly easy going personality, the stoma did not phase me, thankfully. Also, I am not in the first flush of youth at 73 years young. However, body image has always been fairly important to me. I enjoy fashion and try to dress stylishly as possible. Therefore having my stoma made me wonder if my style would have to change. It has not, I'm happy to say. I still wear the same clothes, smart or casual and other than my nearest and dearest no one would guess what lies beneath...I am just thankful that my cancer was caught in the early stages due to having the bowel test here in Scotland. This is a small price to pay for peace of mind and I don’t fancy the alternative. [Mary]
There are many factors that affect body confidence in the general population let alone adding a stoma to the mix.
From the results and talking to ostomates it takes time to adjust to having a stoma and to gain confidence again. I believe it starts with finding the right pouch that fits you well that you feel confident wearing. Gaining confidence in your body takes time and this has to be in your time. It is easy to compare yourself to other ostomates who may have had their stoma after you but you feel are handling the recovery better. Try not to judge yourself to somebody else because their situation may be completely different. Try setting small goals to help build your confidence back up with your body. Don’t miss my post next Friday about how to improve your body confidence with a stoma.
Thank you for reading and I would love to hear from you.