Even if you are unable to eat or drink anything, it is very important that you maintain good oral and dental hygiene. Continuing to brush your teeth at regular intervals and to routinely use mouthwashes are important as the mouth contains natural bacteria and plague can quickly build up, especially if your mouth is dry.
There is no reason why being on PN will prevent you from working. Working will very much be dependent upon other factors such as why you are being fed and how your underlying condition affects you. Once you have settled into a routine and have adjusted to your feeding you may be ready to return or start seeking employment. You may feel better able to cope with work than you have for some time. Portable equipment make it possible to feed whilst you are working although this will depend on your occupation and personal ability. If you are unable to return to work it may be difficult to accept so consider retraining or voluntary work within your means.
Lots of patients on PN have pets and they are perfectly safe to do so. There are obvious precautions if you do own pets and have a central line, etc. but they are really about being sensible and protecting your line and always washing your hands after you are in contact with them. If you have a guinea pig, hamster, or other little animal that like to nibble on anything and everything, then it is advisable to ensure that they never get close to the central line or giving sets.
Your ability to cope will have been carefully assessed by your nutrition team prior to you leaving hospital, and you will only have been allowed home because the doctors and nurses have confidence in your ability to look after yourself. If you have been trained at home you will still have access to all the usual support networks and should let people know if you do not feel you are coping or if things change. It is important that any fears you may have are relayed to your nutrition team who will provide support whenever you need it. If you have nurses coming to your home then you can chat to them if anything worries or concerns you.
Nearly all patients feel anxious and frightened when they are discharged home and the hospital staff are used to patients contacting them after discharge. You may receive the support of a homecare nurse who can be especially supportive to new patients. Your ability to cope may also change depending on how your underlying condition affects you on a day to day basis. It is not unusual for people to have mixed emotions even after a long time on HPN.
It is widely known that people who are managing complex/chronic health conditions experience an impact on their psychological wellbeing and therefore it is important to be open and honest with your team and family about how you are feeling. It is common for our mood to drop over time, especially if our condition(s) goes through periods where it is more demanding on us. Seek support for your psychological health when needed, as you would for your physical health.
Children generally seem to adapt well to anything that they encounter and it is often best to keep them informed and let them know what’s happening. The amount you tell them will be dependent upon their age and ability to understand, but by including them you are helping to dispel the worries that they will be experiencing.
Most people tend to carry on wearing exactly the same clothes as they did before all of the surgery, including jeans. It is important that whatever you wear you feel comfortable in and there is no reason why you cannot be fashionable and wear the latest trends because you have a line/stoma.
This will depend on the symptoms of your underlying illness. However many patients say that they feel stronger than they have for some time due to being well nourished and hydrated and therefore more able to cope with life.
When disconnected from your feed it will not be obvious to anyone that you require artificial nutrition as the catheter will be concealed underneath clothing. If for any reason you need to infuse their PN in the company of other people it is entirely your decision as to how much information they share. Some people share the basic information as to what it is and why, others are happy to go into greater detail. The key factor is to tell people as much as is needed in order to ensure you are comfortable being in their presence. Depending where and why, if there is a need to consider safety, then it is best to tell others around you so you remain safe.
The feeding is organised to cause as little disruption as possible to the lives of both you and your family. By the time you leave hospital, your family and friends will have had some time to adapt to your new lifestyle. Once at home you can decide how much or how little you want to tell people about your therapy. It is advisable that at least one relative or friends should be familiar with the practicalities of HPN. It is natural for people close to you to want to care for you and protect you, but it is far more beneficial to receive encouragement and support rather than sympathy to help you regain your independence to the best of your ability.
If you are a women on home PN and would like to have children, please discuss it with your hospital doctor first. It is possible for women on PN to have normal well nourished children. It will be important to ensure you are nutritionally well and all aspects of your medical condition have been considered.
If you feel well enough then there are many sporting activities you can enjoy. Common sense should prevail at all times. Avoid discomfort or harm occurring to yourself and your catheter. You should talk to your nutrition team before undertaking water sports or any activity which is very strenuous.
Normal life and social activities should not be restricted by your feeding regimen. You may wish to fit your feeding around your activities but be sensible. It is important that you are the master of your treatment and not it of you! Remember that your underlying illness may cause limitations which have nothing to do with your HPN. Social interaction is important if this causes you any concerns then discuss your fears with a friend or family members so they can assist you to overcome any issues.
If you want to - yes. It is advisable that your line should be securely taped in place to avoid displacement. Discuss any feelings or anxieties you may have with your partner, a period of adjustment may be necessary for both parties. Adjustments to altered body image may take time to come to terms with. There is no set time limit because each person is an individual and will therefore respond differently. Underlying medical conditions may affect energy levels therefore interest in sex will vary just like a normal person. If you or your partner have views or emotions that you wish to discuss with people in similar situation PINNT is there to help. Many women find that irregular or absent menstrual periods are restored to a regular monthly cycle when on PN. It is also important to remember that women with absorption problem should not rely on oral contraception as a method of birth control.
Everyone needs a holiday and your treatment should not prevent you from travelling. Holidays at home or abroad may need special arrangements but this should not deter you. Speak to your hospital, homecare provider or to PINNT who may be able to help you consider your options and talk you through what preparations and planning is advisable.
The PINNT Holiday Guidelines are a good place to start, these are free for all PINNT members, non-members can join up here (include link to membership page).
It is always recommended that people aspire to their own goals and not to be influenced into...