Once you have settled into a routine and have adjusted to your feeding thenafter agreement with your nutrition team there is no reason why you should be able to return to work should you feel able to. You may feel better than you have done for some time now that you are well nourished. With portable pumps now available you should also be able to feed while on the move. If you are unable to cope with work then it is important to accept this as part of your illness and you should not feel a failure.
Your ability to cope with your treatment should have been carefully assessed by your nutrition team, dietician or nurse prior to your discharge from hospital. You will only have been allowed home because the doctors and nurses have confidence in either you or your carer being able to provide the treatment you need. The procedures are relatively simple and repetitious and another family member will normally be taught the procedures to help you if necessary. It is important that if you feel unable to cope, you relay your fears to your hospital or GP who can provide support. Nearly all patients feel anxious and frightened when first discharged home.
There are a number of benefits that people on enteral nutrition who are unable to work are entitled to and these include incapacity benefit and disability living allowance, or attendants allowance and tax credits. It is important to remember that these benefits are not awarded because you are dependent on enteral nutrition, but are given because of your underlying health condition makes you unable to work. For this reason these benefits are not given automatically to people on artificial nutrition. It is worth speaking to your health care team and social services to see what benefits are available to you.
If you have a nasogastric or NG tube, then as this tube comes out through the nose, it will be visible to others. They may without thinking look or stare at you as they try to work out what it is. Whilst this is not always pleasant for the person with the tube, it is rarely meant as an insult, more human curiosity. If you feel comfortable telling others what the tube is can be helpful. Some people do remove their NG tube when they are not feeding, but this should only be done with consent from your healthcare professional as reinsertion for feeding needs to be done appropriately and safely, so it is not advised to remove and replace your NG tube without permission and training.
If you have a gastrostomy or jejunostomy tube then this will come out of the body in the abdomen, so it easily hidden underneath clothing, although individuals may notice the giving set if you are connected to your feed where they come out of your clothing.
By the time you leave hospital, your family and friends would have had time to adapt to your new lifestyle. Once you are at home it is up to you how much or how little you want to tell people about your illness. Most people are quite relieved to know that your new treatment is doing you good. Support from your family and friends can make all the difference to your acceptance of the therapy. Make time to discuss your feelings. Sometimes family members may feel guilty about eating and drinking in front of you.
When your child leaves hospital you will told about the “Homecare” company that you local health authority uses. These will take over the responsibility for ensuring that your child has everything that you need to be able to administer the feed and do so in a safe manner. Typically you will receive a phone call from the company about 7 days prior to your scheduled delivery date, to check on what stock your child have left and what they will require to cover the next period. After the stock check and order is processed you are given the opportunity to discuss any issues with deliveries, such as alternate address if you are not going to be at home. It is important to remember that it is your responsibility to ensure that you are able to collect the delivery; after all it is your child’s medication that you are receiving. You cannot expect the courier to wait around for you or make repeat visits to your home to see if you are in to take the delivery, so it is recommended that you have someone wait in for the courier or arrange for an alternate delivery address before hand, if you know that you will not be available to collect the delivery.
It is important to explain the reason for needing this type of nutritional therapy in a way that is appropriate for your child. No one knows your child better than you do and you will know how to explain things to him/her. It is therefore recommended that you make sure that you are fully informed with the situation, with how things stand at the moment and the reasons for the treatment being given and how things are likely to progress in the future. When you are more informed with things then you will find a way to explain them to your child.
How you go about telling them is something that cannot be planned, children are unpredictable and naturally curious and question things around them. Use your instincts as a parent to know when and how to inform them. With so many reasons behind the need for enteral nutrition it can be confusing to explain the entire condition and the mechanics behind nutritional requirements. It may therefore be useful to remember that despite the physiological reasons behind the need for enteral feeding, it comes down to the basic necessities for all life. In order to grow and develop we need to give our bodies the ingredients to do the job. Whether the ingredients come from food or from the feed, the body will get what it needs to grow big and strong. It may be possible to seek support from your child's healthcare professionals if you are unsure how to broach the subject. The hospital or unit may have child friendly resources to explain it to your child.
Body image issues are a frequently encountered issue, but need not be a problem. It is normal to find it difficult to adjust to your body when you have a tube in place. After all it is something that you are not accustomed to. It is advisable to talk about your feelings with your nutrition team and your family or friends who will help and support you to accept yourself. You certainly would not be the first to have a period of low body image, but with time and support you can overcome it.
NO, there is no reason at all why you will not be able to be involved in a committed relationship with someone. It is a misconception that people will not understand and they will turn away from your because of your medical condition and extra needs. Many patients with NG, NJ, PEG or PEJ have found themselves involved in serious committed relationships and often report that it is when they accept themselves and the facts of their nutritional requirements that people begin to take an interest in them.
If you feel well enough then there are many sporting activities you can enjoy. Very physical contact sports may be best avoided if you have a gastrostomy or jejunostomy tube in place in case it gets dislodged. If you are undertaking any strenuous activity you may need some extra water to prevent dehydration
If you feel well enough it is important to continue with social activities. You may find the time taken up with feeding is a little restricting – but you can stop and start your feeding around your social activities as long as you are sensible. It is important that you are master of your treatment and not it of you. Remember that your underlying illness may cause some limitations which have nothing to do with nutrition.
A normal sex life can be maintained. You should try to minimize the presence of the tube and not let it inhibit you. Discuss your feelings about your treatment with your partner and any anxieties you may have. Adjusting to your new body image may take time, it depends on the individual. If you are already in a relationship this too may need time for adjustment, again it depends on the individuals concerned. Progress at a pace you feel comfortable with. It is therefore advisable to discuss these feelings with your partner and that should allow for a deeper understanding between the two of you, avoiding any misinterpretation of the situations and they can support you. Remember you are not the only one involved in this situation, so you don't have to deal with it alone. In some cases you may find that your medical condition affectes your energy levels and your interest in sex may not be as great as the average person, but remember that this is something that is perfectly normal in people who are fit and healthy. There is no typical level of sexual interest, so do not be hard on yourself for your lack of interest. talk about this with your partner. It can be helpful to talk to a third party about such matters and if youor your partner have views or emotions that you wish to discuss with people in similar situations, PINNT is there to help.
If you are a woman on enteral nutrition and would like to have children it is important to discuss this with your hospital doctor. It is not impossible for people on artificial nutrition to have well nourished babies but it does require some planning and consultation to make sure you receive all the necessary nutrients needed for the baby to develop normally. It will be essentially to ensure you are nutritionally well.
Everyone needs a holiday and your treatment should not prevent you from travelling. Holidays at home or abroad may need some special organisation but this should not defer you. Supplies can be arranged from home. Speak to your hospital, home care provider or PINNT who may be able to help you with the necessary arrangements.
If you have a naso-gastric tube this is not a problem. If you have a gastrostomy or jejunostomy tube there is also nothing to prevent you enjoying showering, swimming or water sports, once the stoma is fully healed. Indeed it is a good form of exercise as long as the exit site is well healed, your skin is in good condition and your tube is clamped or capped off.
If your doctor believes that you are well enough to drive then there should be no problem with it, although you may have to inform the DVLA of your current medical status and they may request written confirmation from your doctor to state that he declares you fit to drive, but in general many people on enteral feeding can drive.