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Dealing with a stoma as a young person

10th February 2021

One of the many myths associated with having a stoma is age and the assumption that only older people have a stoma. Stomas can affect people of any age groups as bowel and bladder disease, dysfunction or continence issues have no boundaries! Coming to terms with having a stoma when you are a young child, teenager or a young adult, can feel a very lonely and an isolating journey. But remember there are lots of support groups which enable you to talk and get the support you need. Many young people have turned to blogging about their stoma journey and use their experiences to help others overcome their frustrations and emotions of having a stoma.

For most people Valentine’s Day signifies a day of love and kindness, sending messages of affection, romantic gestures such as the giving of flowers and chocolates. But for some ostomates it may bring worries about new relationships, body issues, concerns about being intimate and where the future will take you with a stoma. Don’t let having a stoma get in the way of having fun, dating or being intimate with a loved one. Remember, self-love and acceptance can be the important means to finding love with others….

Who should know you have a stoma?

The big question is who do you tell that you now have a stoma? Your family will no doubt be fully aware so that they can support you through your stoma surgery and recovery.  But do you tell your friends and your boyfriend/girlfriend? It can be scary thought for anyone in a new relationship to disclose something so personal. Although it may feel like a weight has been lifted by telling people close to you, don’t feel you have to, there is no shame in keeping it to yourself. While you are fully clothed, no one will know either! As long as you have someone close to talk to about it all and you make sure you are not completely alone.

If you have close friends who are trustworthy and/or a close loving relationship where you can rely on them to support you, then why not share this new knowledge, you might be surprised at how supportive people can be. You may also feel relieved, as it gives you someone to confide in the future.

New relationships bring the question of how and when to tell a new partner about your stoma and whether you tell them straight away or wait. This is such a personal decision. Sometimes honestly is the best policy and you may find that people are not as scared off as you expected.

Keeping your confidence:

Having stoma surgery is a big deal and often involves major surgery! It takes a good 6 weeks before you are feeling back to your old self and up to 12 weeks before you are returning to activities you might have been doing before your surgery. You may feel by this stage, the surgery has actually given you new lease of life! Depending on why you had your surgery, you may be feeling more energised and positive as the worries of constantly running to the toilet are over. The pain and cramps you may have been experiencing before, may now have eased now that your bowel is settling down. You may also feel liberated that you now have some control over your visits to the toilet.

Body image is a huge worry for most ostomates. How will my stoma look? How will I ever get changed in public? How will I manage my stoma when I am out with friends? What can I wear to disguise my stoma? Will I ever get a boyfriend/girlfriend now? Take the time to read some blogs online, they are written by ostomates who have gone through all the experiences you may be worried about yourself. The National Stoma Associations are extremely valuable and have a plethora of leaflets and information on a range of topics regarding intimacy and sex. They can also put you in touch with another ostomate of a similar age, to talk to over the phone.

Speak with your stoma care nurse and they will be able to answer a range of questions you may have open and honestly, providing you with tips given from other patients, where to buy tailor made underwear and swimming costumes, stoma appliances for intimate moments, in addition to ongoing support with your stoma and pouches.

Dating with a stoma:

Dating in general is very tricky in today’s world with the Covid-19 pandemic all around us. Staying within your bubble and social distancing makes dating almost impossible! Current guidelines allow you to meet up with one person in an outside space as long as you are 2 meters apart, so take this time to go for long outdoor walks and really get to know each other. Or talk online, it’s perfectly acceptable for long talks via facetime or zoom call keep the romance going!

Sex and Intimacy:

It’s a good idea to check with your stoma nurse when it is safe to resume sexual relations following your stoma surgery. You may feel a little worried about resuming an active sex life, so start slowly to enable you to feel happy and secure with your partner.

For those in a long term relationship, you may have already told your partner about your illness and  surgery so they can support you through this time. They may have already seen a stoma pouch and therefore it should not come as a great shock to them. However, it may feel very different after surgery when you are actually wearing the pouch, you may feel more self-conscious.

It may be worth discussing your pouch before you get physical with a new boyfriend/girlfriend or existing partner, so that you feel more relaxed about how your pouch looks. Showing your partner, a clean pouch and allowing them to handle it and ask questions can help alleviate some of the ‘mystery’ and help put both you and them at ease. The newness of the pouch soon will soon fade.

It is worth taking the time to empty your pouch before intimate moments.  There are options of using stoma caps, or a smaller pouche which can be rolled up and clipped, both can be worn for a short period of time. You may want to change your clear pouch for an opaque one for these occasions. Pouches can also be covered with cotton material, there are bespoke pouch covers available in a variety of designs l, to become more discreet. There are also attractive lacey underwear garments which can be worn to cover your pouch, as well as underwear options for men.

Speak to your Stoma Care Nurse for guidance and product information.

Support Groups:

The ileostomy & Internal Pouch support group: 0800 0184724

Colostomy Association: 0800 328 4257 

Junior Ostomy Association: via Colostomy association

Urostomy Association: 01386 430140  

Breakaway Foundation: 012832 40253  

Mitrofanoff Support: 01202 674336 

 

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