Is it all worth it?
Surgery and any long term changes to your lifestyle can seem daunting. Both the operation and the recovery will be an ordeal and learning to live with a Ileostomy will take time to adapt to. However, the operation is only advised when it is necessary for reducing your current levels of pain and discomfort from disease or an accident. The ileostomy stoma will not prevent you from undertaking everyday tasks that you enjoy and like you, there are over a million other people who are living healthier lives with a stoma.
Learning how to relax
Our body can experience worsening symptoms and discomfort when we are feeling anxious and stressed. To aid your recovery post-operation, it is important to find ways to relax.
Whilst reading or watching TV can provide a distraction, it is better to find a way to physically relax the body and relieve the build-up of tension. The more we can physically relax, the more you can mentally relax too.
Here are some tips on relaxing:
- Find a quiet place where you won’t be disturbed
- Make sure you are warm, are not hungry and haven’t just eaten
- Get in a comfortable position, for some this will be lying, others sitting
- Use cushions and pillows to support your body and give comfort
- Take time to clear you mind of the thoughts, focusing on your breathing can help
- Closing your eyes can sometimes help
- If your mind wanders, try to bring it back to the task of relaxation
- Take three slow, deep breaths in through your nose and out through your mouth
- Then continue with slow breathing at a rate that is natural to you
- Slow deep breathing comes from your diaphragm, so should raise and lower your rib cage
- Make a commitment to keep practicing, relaxing takes time to learn
Once you have got used to relaxation through breathing, you can add to this techniques, to relax your muscles;
- Start by getting into your relaxed breathing
- Think about your body, from the top of your head down to the tip of your toes to check that it is comfortable
- Shift yourself around to improve your comfort
- You are now going to think about the different muscles in your body one at a time
- Start with your hands, clench your fists to increase the tension, feel the tension, then let go and feel the relaxation. If you find it easier, you can do one hand at a time.
- Take time to focus on your breathing before moving onto the next muscle
- Now your arms, stretch them out as far as the will go, feel the tension, then relax, letting them go limp, feel the relaxation
- Shrug up your shoulder and hold them high, close to your head, feel the tension, now drop your shoulders and feel the relaxation
- Frown and scrunch up your face as tightly as possible, then relax
- Arch your back, hold it taut and then relax
- Tense your stomach muscles, pulling them up and in, as though you were going to blow, relax
- Pull your leg muscles tight and pull your toes up, then relax them all
- Now point your toes away from the body before letting them return to a natural position
- Return to any areas where you can still feel tension
This type of exercise may seem strange if you are not used to it, but it is very beneficial and not strenuous, so can be practiced regularly.
Will there be help available?
In most cases your Stoma Care Nurse will be available to offer your support and advice even when you have left hospital. There is also the Ileostomy Association who can offer help and support.
What will my new ‘normal’ be?
Initially you and your family will be going through a major period of adjustment. Having a stoma will mean that you have to adapt to a new way of life and you may have days when it is difficult to cope. It is important to access the support that is available, particularly at these times.
Remember that other than the way you go to the toilet, you are the same person you were before surgery. Be reassured that over time you will adapt and become more confident and comfortable with your new lifestyle.
Be patient, make use of the support networks that are available, stay active both physically and socially and find techniques that help you to relax.
How do I select an appropriate ileostomy appliance?
There are several Ileostomy bags available and your Stoma Care Nurse will provide you with advice to help you select the most appropriate option. The appliance consists of two main components:
- A bag to collect the faeces, which can be closed end (single use) or drainage
- An adhesive or skin barrier which keeps the bag in place around your stoma. This has been specially produced to be applied and removed without any damage to the stoma
There are products that incorporate the two components in one appliance, these are designed for discretion, simplicity and flexibility. There are also products where the bag is detachable, which allows it to be changed without removal of the skin barrier and also means the skin barrier can be more precisely cut to fit.
As your stoma reduces in size as the wound heals, you are likely to need to change the size of the appliance you are wearing, to ensure a good fit.
Modular skin barriers are also available, which eliminate any gaps between the stoma and your skin, which provides additional comfort and reassurance.
How long will I be in hospital?
On the day after your operation, you are likely to be encouraged to get out of bed. Over the following days, you will start walking about and will usually moving around independently after 3 or 4 days.
Depending on your operation, you could be in hospital for between 7 and 14 days. Whilst in hospital you will have the support of the Stoma Care Nurse, so you feel confident about changing the ileostomy bag and the on-going care when you are home.
You will have no control over the passage of faeces or flatus (wind), which may cause you embarrassment at first, however the nurses specialise in stoma care, so are used to it. Over time your ileostomy stoma will settle down to a more predictable pattern. Flatus will cause the bag to inflate, but they have a filter which will release the excess air without odour.
Before you leave hospital, you will also be given advice on how soon you can expect to get back to doing everyday activities such as driving, returning to work or playing sport. There is no standard time for returning to these activities, as each case is individual, however follow the advice you are given and don’t push yourself too much too soon. Expect not to undertake any strenuous activity for at least six weeks after surgery.
When you leave hospital your GP will be sent a letter detailing any on-going treatment you may require. You will also receive an outpatient appointment that you will need to attend. This check-up is usually a few weeks after your operation and can be a good time to raise any issues that you are experiencing.
No need to be alarmed
Following surgery, you are likely to come round from your general anaesthetic in an intensive care unit and remain there for a couple of days after your surgery, so the medical team can keep a close eye on you in the early days of your recovery. You are likely to have a heart monitor connected to you and an intravenous drip to provide you with fluids until you are able to eat and drink again. You may also have additional tubes to support your recovery.
There is no need to be alarmed if any of the following occur:
- You have one or more tube in the operated area. These are wound drains that remove excess fluid that collects
- There is a tube down your nose, as this will drain fluid and prevent you from feeling sick
- There is a tube going into your back. This (epidural) is providing pain killers into the fluid around your spinal cord
- A catheter is fitted to drain urine away
- Your stoma is covered by a ileostomy bag
Be aware that initially your ileostomy stoma won’t work, as your stomach recovers from the operation. It usually starts to work after 2 to 3 days. It will be swollen following surgery, but will get smaller as it heals.
At first thick white mucus will be produced and will collect in your ileostomy bag. This is normal and the mucus will reduce, you will then begin to produce faeces which will collect in your ileostomy bag. At first the Stoma Care Nurse will manage this, then they will show you how to do it.
Suggested questions to ask
When you are pre or post operation, it can be difficult to think of the questions you need to ask when the opportunity arises. Write down any questions that come to you when you have time to think. We have compiled a list of common questions, which may also help you to get the information you need.
- Where will my ileostomy be?
- What will my ileostomy look like?
- How will it work?
- What will be the output?
- How often will it discharge?
- How will I know that it has discharged?
- How do I clean the ileostomy?
- Can I go in the bath?
- Will it be visible under my clothes?
- What does the pouch look like?
- How do I change the pouch?
- Does the pouch leak?
- Where can I get supplies?
- How much will they cost?
- Will I need to change my diet?
- When can I go back to work?
- Will I need to make any changes to go out socially?
- Will there be any restriction on travel?
- How will it affect my sex life?
- Where can I get support and advice?
Will my medical insurance cover any care costs?
What is a stoma nurse?
- When you are in hospital for an operation there will be a team of people responsible for your health. For ileostomy patients, one of this team will be a Stoma Care Nurse. They are responsible for helping you to learn to cope with your stoma, making you aware of care routines, as well as guiding you in choosing the supplies you will need and where you can purchase them.
- Stoma Nurses (also known as Enterestomal or ET Nurses) are specialists who will help you pre and post op. They will be able to answer any questions that you have. Prior to surgery, they will also ask you lots of questions about your lifestyle and needs, as this information may influence the best position for your ileostomy stoma. The position is important for you future comfort and ability to properly care for your stoma. The nurse may mark your abdomen so the surgeon can see where to form the stoma.
- If you would like to meet with someone who is currently living with a stoma, so you can discuss issues such as what measures they have employed to best cope, your Stoma Care Nurse can arrange this for you.
Why do I need an Ileostomy?
- The most common reason for a Ileostomy is in the treatment of bowel (colo-rectal) cancer, which usually develops inside the colon or rectum. The surgery will remove the part of the colon or rectum where the cancer is situated, along with some surrounding bowel.
- An Ileostomy may also be necessary if you have a condition called diverticulitis, where small pouches in the wall of the colon become infected and inflamed. On occasion an Ileostomy is necessary to treat inflammatory bowel disease due to conditions such as Crohn’s disease or ulcerative colitis.
- Serious chronic bowel conditions, such as intractable constipation or diarrhoea may also make an ileostomy a necessity. An emergency ileostomy formation may be required in the event of abdominal, perineal or pelvic trauma or bowel obstruction.
Ileostomy stoma aftercare
- It is vital that you take good care of your ileostomy stoma. This app provides you with details on how best to care for your stoma and support services.
- Your ileostomy stoma will look like a small spout sticking out of your abdomen and is red, like the inside of your mouth. The stoma has no nerve supply, so it will not hurt, but you need to take extra care not to injure it, as you will be unable to feel if you do any damage.