Emotional support after stoma surgery

Coping with the changes after ostomy surgery can be a bumpy ride with many ups and downs along the way. There's no short cut, but in time you will achieve balance and happiness in your life - just like others who have been through similar challenges have done.

You may have felt relief following surgery, as it may have helped to alleviate any symptoms you had previously experienced as part of a chronic condition.

But as you begin to return to daily life, feelings of confusion and frustration might start to emerge. While there's no universal solution for dealing with these feelings, there are certain things you can do to regain balance in your life.

Take control

It is not uncommon to experience a loss of control over your situation. If that's the case you should take an active part in every decision concerning your stoma, from choosing your products to setting the boundaries for what you are and aren't ready for. This will give you a greater sense of control – and that will without a doubt make you feel stronger.

It is also quite natural to feel a certain sense of identity loss, as if somehow you became someone different after the surgery.

With that in mind it's important, where possible, to continue to keep doing the same things you used to do and enjoy before.

Try not to be nostalgic about life before surgery, but to remind yourself of all the positive experiences you can still enjoy.

Make a list of all the things you used to do and enjoy before, and make sure that you continue to do at least a few of these things each month. And remember: It is only your physical circumstances that have changed. Not who you are as a person.

Going through the changes you have been through is not just a physical, but an emotional challenge as well.

Going through any big change in your life can be a shock. This is true for everyone – not just for people with a stoma. Many people associate the way they look with who they are, and when that changes radically, as with stoma surgery, it can shake up your understanding of yourself.

A change, like having a stoma formed, can spark feelings of isolation. Many people will have some level of struggle coming to terms with their stoma.

With time the feeling of isolation will go away, but until it does, it is important that you allow yourself to grieve over the changes. This process is a natural way of coming to terms with the changes that have happened to your body, and is a positive and necessary part of the process – and not something you need to suppress or fear.

Of course, if you are experiencing extreme stress or a feeling of hopelessness, you must seek help immediately. Start with your family and friends. If you are unsure of what to do, call your doctor or stoma care nurse and let them know as honestly as possible how you feel.

Will I be a burden?

A common worry for people with a stoma is that they will be a burden to everyone, leading some to keep their stoma secret. However, letting people who care about you in, and allowing them to help you, will likely make things much easier.

Your friends and family are probably looking for ways to support you - so never feel bad about letting them, as they will want to be included.

Will I ever be myself again?

When you are going through the healing process, it is very normal to begin to wonder if you will ever come to terms with this new version of you.

Try to allow yourself some mental rest by not putting pressure on yourself to feel a certain way. People adjust in different ways and at different speeds. There are things you cannot simply rush through or will into happening.

The mind is a strong and beautiful thing, and it can heal in extraordinary ways if we let it. But just as the physical healing process after surgery took its time, so does the emotional healing. You will be yourself again – albeit a slightly different version, perhaps even stronger than before.

Feel like you're stuck?

If you feel you have waited a long time and are still struggling, do not shy away from seeking professional help. Your doctor or stoma nurse can no doubt help point you in the right direction.

When my Crohn's disease became uncontrollable, I decided to take some time off work. I was a courier at a family-run firm and didn't want to have to let them down at the last minute, as it was becoming increasingly difficult to carry out my duties.

My boss was quite understanding, but obviously the situation couldn't go on forever, so I had to make the decision to give up my job.

I had made some good friends in my thirteen years with the company and one in particular always came to visit me at home, and also when I had various stays in hospital. My office boss came to visit me at home and we still meet up from time to time. I call into the office for chats sometimes, as he only does a couple of days a week now since his retirement.

Those visits were very important to me as I was feeling very cut off from everything, and all I ever saw was the four walls of my house. It helped me get through those difficult times.

My family was my rock

My family throughout my illness was essential to me. My wife especially, who became my carer through all of this as, a lot of the time, I had to have help in the bathroom, getting in and out of bed, and getting dressed. This sounds pathetic, I know, but anyone with this illness will know how debilitating it can be. I am very lucky to have five wonderful children; although all grown up now, they were all my rock.

On the morning of my operation, my eldest stepdaughter took me into hospital along with my wife and youngest daughter. They came up to the pre-operative suite with me but when it was time to go in there I wanted them to go, as I feared it would have gotten quite emotional for all of us, and I needed to keep it together before this daunting operation.

My daughters stayed with my wife all day and ten hours later when I awoke from my operation, my wife and eldest stepdaughter were there as I came round. All of them came into see me every day I was in there, and also my friend whom I met in hospital.

Getting help at home

On the day I came home my wife and daughter picked me up and took me home. My family all rallied round to help during my recovery, my wife especially with help getting dressed and so on... it's a good job she used to be a nurse!

Talking to others about your stoma can be a daunting task. It is generally helpful to have a fairly strategic approach - especially in the beginning.

How to prepare for conversation

Start by thinking what you want to get out of the conversation. Do you want to be able to talk openly with the other person or do you wish to show that nothing has really changed?

This will help you address the feelings, needs or concerns in the particular situation instead of "just" talking about your stoma - and have a much better chance to avoid getting disappointed or feeling exposed.

Write the beginning of the conversation down

This may seem silly, but often it is only the beginning of a conversation that is actually difficult. So by knowing exactly what you want to start with, you make it easier to approach it.

Have a positive attitude

How you act and how you say what you want to say will greatly influence the outcome of the conversation. So even though you may be nervous, take a deep breath and remain positive. Your listener will most likely copy this position and feel more relaxed.

A bit of well-placed humour can also help ease any awkwardness for both you and those around you, as well, and helps you control the tone of the conversation.

Your listener most likely has not had the benefit of being prepared for the conversation. They may not know anything about life with a stoma, and may be concerned about how, or if, this will impact your relationship.

Sometimes people struggle with the news, and may also need to take a moment to understand the changes. Especially if your stoma surgery had not been planned. They will need time to adjust, in the same way that you do.

Talk together to understand the common worries you might have, and build on what you share to create an understanding. This is the best way to get a constructive, giving conversation.

There is more to you than your stoma

It's easy to become obsessed with talking about your stoma and focusing on it. Shifting focus away from your stoma from time to time to resume conversations about your passions, hobbies and interests will help reassure friends and family that your relationship has not changed.

You don't need to include everybody

When discussing your condition with anyone, you put yourself in a deeply vulnerable position. And with the exception of any children or grandchildren, you should have these conversations for your sake, not for others.

If someone is not giving you the opportunity to express your thoughts and feelings but rather bombarding you with advice, however well-meaning, feel free to close down the conversation.

If there are young children or grandchildren in your life, your first thought might be that they are too young to understand.

But hiding the truth from them can make them think a situation is more serious than it really is, and children tend to cope well if they are given the information in a simple and honest way.

How to tell teenagers

It is not uncommon for teenagers or even older children that they react with anger or withdrawal when confronted with a parent's health condition or surgery.

Some parents choose to tell their teenagers only key points about their surgery, but remember that in spite of their reactions, it is still important for them to hear your open and honest answers to their questions. Also keep in mind that any emotion is an expression of their love and concern for you.

Many find comfort in talking to their family or close friends, but it can also be tremendously helpful to talk to someone with similar experiences about life with an ostomy. Ask your stoma care nurse if it might be possible to put you in contact with others in your situation.

• The Ileostomy & Internal Pouch Support Group www.iasupport.org
  
  IA (The Ileostomy & Internal pouch Support Group) is a registered charity which specialises in supporting people living with an ileostomy or an internal pouch, their families, friends and carers.
  Established in 1956 by the surgeon who developed the ‘spouted stoma’ – a surgical technique still used today, IA works very closely with the surgical and nursing communities to provide independent support in the form of patient-focussed literature, quarterly magazine, IA’s patient visiting service -putting patient and visitor in touch – and a network of local support throughout the UK and Ireland. IA’s volunteers have themselves undergone surgery so guidance and support comes from personal experience.
  Why not get in touch with us today on 0800 0184 724, email info@iasupport.org or online at www.iasupport.org.
  
  
• Colostomy UK www.colostomyuk.org
  
  Colostomy UK is a national charity that provides support, reassurance and practical advice to anyone who has or is about to have a colostomy in the UK. We believe that everyone with a stoma should be able to live a full and active life. We are here to help and support you, your family and carers. Our 24/7 helpline offers advice and support and our volunteers, who all have a colostomy, will listen and provide reassurance. Our wide range of informative booklets, quarterly magazine and Facebook group provide support to anyone affected by stoma surgery.
  
  
• The Urostomy Association www.urostomyassociation.org.uk
  
  The Urostomy Association provides information and support for people who have, or are about to have a urinary diversion of any kind, including urostomy, continent diversion and bladder reconstruction.  We have information leaflets available on many of the issues which will affect patients before and after surgery, along with a DVD and regular magazine. Our local Branches offer a chance to meet people in a similar situation, and our trained volunteers are available to assist on an individual level. Membership is free of charge for the first year, via our website, by post or telephone.