Page for friends and family
How do you deal with it if your partner, a friend, colleague or a family member receives or has a stoma? Everyone experiences this differently and reacts differently. It also depends on how the ostomist themselves deals with it. If the person with the stoma has a positive outlook, then it is often easier for those around them.
If someone you know gets a stoma
Often someone who gets a stoma is very ill. If you are confronted with an illness in your environment, it can be confusing. What do you do? Some people have trouble knowing how to express their sympathy. They rush in, or withdraw. If you are close you must find out what is the best thing to say or do. This varies from person to person, because every person is unique and reacts differently to grief and the emotions which appear with illness.
But there are some things you should keep in mind:
Many people often feel uncomfortable and do not know what to say to a sick person. You want to reassure someone and sometimes say things like” It’ll be fine”. This can be hard for the sick person: they feel silenced at that moment because they do not want to whine. It is better to say something like “I don’t know what to say, but I am thinking about you a lot” or be honest that you are also scared and worried. This gives the space to talk about it. Often, just listening is very important. Let the other person talk and express their feelings, even if you already know the story. Try to empathise with the sick persons feeling. If he or she sees the situation as very serious, try not to be too optimistic and take them seriously. Be careful with reassurance, you never know how things will go. But do not make the situation more dramatic than it already is, through for example mountains of gifts and attention.
Remain yourself. Do not get upset, pressurise or overly sweet in the presence of the sick person.
Some sick people push away their best friends or relatives away in their grief, anger and other emotions. Do not think: “I shall leave him or her alone” Keep inviting, visiting, but do not push yourself on them. Ask the sick person if he or she would like you to come at a certain time, or if you can come spontaneously. If talking is too difficult, then go and do something nice together. What sometimes works is to offer practical help, naturally depending on your relationship to the sick person. Just ask what help is needed and offer a concrete help. Sometimes it can be something as simple as letting a dog out or doing a job around the house, which could mean a lot to the sick person. Keep in mind, that a sick person, especially in the beginning, may find it difficult to ask for help because he or she has (temporarily) become a bit more dependent. So do not try to take over everything; things that they can do for themselves can give self -confidence. Also just doing nothing can also be a good form of help. Sometimes it helps just being there.
If you have trouble getting to visit, do not make excuses such as “I am too busy”, but be honest. Excuses are far more painful than being honest. Also only promise what you can carry through. If you do go to visit, do it with an open mind. Do not prepare in your head before all the things you want to say, let it all depend on the situation. For a sick person, it is very difficult to see that people avoid you. If you notice this happening it is very good to send an email, card or SMS message and to write therein that you do not know what to day, but that you are thinking of him or her.
A card, SMS or email are very suitable ways of contacting a sick person. The patient can then decide when he or she wishes to answer. When you call ask if it is convenient and do not be disappointed if it isn’t. Things like “if you need me, you can always call” are open and do not always have to be responded to. People who are sick often feel unable to make choices, even in very simple things.
To comfort someone it is necessary to empathise with the experience of the person in pain. In this way you can comfort and give the other person the feeling that they are not alone. The sadness is not over, but the knowledge that someone is with you and that you understand, can be very helpful. Consolation is sharing together with loving attention, such as a shoulder to cry on. Consolation can bring rest in an emotional turmoil and may help to better accept reality.
A smile and a tear are close to each other and can be both. Humour can help someone who is sick, but use it appropriately.
If you are ill, it may be a pleasant distraction to talk about something else, whether it is a difficult problem or something pleasant. A visit to a patient does not have to be one sided. If you have a problem with something, no matter how small, do not try to hide it. Many people think, “yes but it is much worse for him/her”. Suffering can not be compared. By not talking about what is bothering you, you are thinking for the other person and that is disrespectful. IF it is too much for the patient, trust that the subject will drop itself. Or just ask. Try to avoid thinking for another person. A sick person has already lost control over his/her body, and then you take away that last bit of control. Show compassion, not pity.
Try not to compare the complaints of the patient to complaints that you may have had or recognise in someone else. If you are sick then these complaints stand central in your life that if a healthy person also has (had) these complaints, then it seems a denial of the problem the patient is feeling. Comments like “I know exactly how you feel”, or “I know someone who had the same and is not really well (or not...)” are better not said. You are not dealing with the patient then, but yourself. Also try not to make comments such as “Gosh you have gained weight” or “you look really awful”. A patient already feels different to everyone else, so it is not nice to highlight and further setbacks. Try to say something nice such as “your hair looks nice” or “that’s a nice jumper”. But also do not say things like “you’re still looking good”. A patient wants to feel that he or she is being taken seriously. Do not give opinions about treatments or the doctor and try not to give a solution or advice.
Do not try to avoid the disease, but try to find out if the patient wants to talk about it or not. Let the patient know that if they want to, they can always talk to you. But do not try to impose. It is a normal human phenomenon that we want to help people in need. This usually means we want to do something. But doing can also mean leaving: Leave someone in peace or do not try to immediately take over things.
An event such as an illness can change relationships between people. A relationship can be closer, but also (temporarily) shift more into the background. Remember that a disease often involves fatigue, making it difficult for the sick to be active and alert. So certainly in the beginning do not expect any gratitude for your help or attention.
Are you aware that during a hospital stay a SMS, card, call or visit can often be especially appreciated? Especially do not forget to give attention to the partner, family and friends of the patient.
If your baby or child gets a stoma
If your baby or child gets a stoma it can be shocking. You are still in the flush of the birth and something appears to be wrong, or your child who deserves a happy life, has already been sick for a while. A baby or child with a disease and/or a stoma can be taxing for the whole family; it can have an enormous impact. Certainly for the parents, who have to face many extra tasks and responsibilities. The effects can significantly mean more energy, time and thought and can thereby have a deep effect on the daily life, which suddenly looks very different to that of a “normal” family. Parents sometimes make enormous efforts to try to improve the quality of life as much as possible, because they want their child to be as normal and as happy as possible. In a family with several children the parents are sometimes afraid that the rest of the family is short of something due to the extra attention that is given to the child with the sickness and/or stoma. It is very important to find a balance. Children are very loyal and feel much more than you think. You are better off involving your other child(ren) with everything about the child that has the disease and/or stoma than trying to protect them. Naturally, this depends on the age and capabilities of your children. However children are naturally willing helpers and it gives them a good feeling to have a practical involvement. It sometimes feels as if you have to split yourself to help all sides, because your partner also needs attention from you. So keep on talking and think about yourself as well.
If your partner is ill and gets a stoma
If you have just met, you are not aware that your partner can get sick. When that does happen, life for the healthy partner revolves around the patient and the disease. What is often forgotten that the disease (and the consequences such as a stoma) can also have an enormous impact for you, the healthy partner. A lot of cares can fall on the shoulders of the healthy partner. Be careful this does not take over and the balance changes so that you are more a carer and the relationship is no longer equal. On the other hand a strong bond can be formed, and you feel extremely connected by the struggle you are making together. Share your thoughts and needs with your partner, so that there no misunderstandings can arise. You cannot read each others thoughts, so it is important to ask questions and to talk to each other. The way you process things of you and your partner will almost never sync, everyone handles things in their own way. It is also an interaction between you both. Partners can enhance each others feelings and then it is difficult not to get into a negative spiral. Therefore share your feelings with each other.
Anger or fear after surgery can play a role, which is very normal because you often have a kind of mourning process; you are saying goodbye to the ‘intact’ body and must get used to the new one. Consider that sometimes these sorts of feelings react against those closest to you. Some people who get a stoma think: “it’s my body that is faulty, so I must solve it myself”. But of course that is not how it works. You must get used to the stoma bag that is suddenly hanging between you together. The scar and the stoma bag, which is something you and your partner will have to get used to. There is suddenly something strange between you that cannot just be laid on the bedside table. The advice: take time to adjust. When one of two partners becomes sick or has a n operation, it is always necessary for you to adapt to the limitations or the consequences this brings with it. And don’t be afraid to ask a professional for help if it gets too much.
If someone around you has got a stoma
It is very understandable that you are afraid to bother someone and do not dare to ask quickly about the stoma. But you can hurt someone more if you ignore it. If you have just got a stoma you feel very uncertain about many things, and is people begin t avoid you, it only makes things worse. If you want to help the ostomist to accept their stoma, you should treat them as you did before the operation. Don’t ask for all the details but be interested and listen. Give them the room to find their way in life again. Stay interested, even now the operation is over.
Below you can read some personal stories of people who knew someone who got a stoma:
Personal story of Miek, her sister got a stoma
Personal story of Margo, her mother got a stoma
Personal story of Linda, her partner got a stoma
The story of Miek, her sister got a stoma:
"I am Miek, 31 years old, the younger sister of Lynda, who got an ileostomy on January 13, 2006. She is my everything, my friend, my buddy. In 1997 my sister underwent an operation due to endometriosis. After this operation she had many intestinal problems, She could not go to the toilet, causing massive constipation. Medicine, clysters, high clysters and rinsing of the intestines went on for 8 and a half years. At one time it just couldn’t go on. She couldn’t eat any more, and lost a lot of weight. Eventually she was admitted in an emergency to hospital and two days later got her stoma. Just what the doctors had always opposed, because she “only” had constipation.
Actually in the beginning I did not know that my sister couldn’t go to the toilet, medicines actually seemed “normal” with my sister. Passing wind, well she could do that a lot. But if you suddenly notice that she has lost a lot of weight, feels ill and as if she has been poisoned, then you start to worry. I was afraid that I might lose my sister, it was all quite frightening. Especially when the doctors do not seem very bothered. The last check up that Lynda had before her emergency admittance, I was with her. The doctor was very nice and seemed a bit more inclined to give Lynda a stoma. However he found her too young for a stoma. Frankly I wanted to pull this man over his desk and say ”Look at her! She may well be a beautiful young woman but she is skinny and will die if you don’t do something.” When Lynda asked me a week later on to take her to the doctors, I was a little relieved; finally my sister would get some help. But after she was sent to the emergency and they, after giving her an enema , sent her home again, I was completely undone; surely not?? Fortunately she called the surgeon the next day and was immediately admitted.
My first thought when I heard that my sister was getting a stoma was: HAPPINESS! She was finally getting help and would get better and will grow old. When she finally had “it”, I rode with trembling knees to the hospital, wondering what I would find. But when I arrived, she was lying asleep with a smile on her face, it was just beautiful to see. Each day she made great progress, and within a few days she could already go home. It was not annoying to go to the hospital, because she called me every day and she always sounded cheerful. My first impression on seeing the stoma was; “ well Lynda, now you have to shit in a bag, never again the normal way”. That realisation made me feel a bit strange. I believe that I first saw the stoma in the hospital. Lynda was almost proud to let me see it. Shortly afterwards she had to be cleaned up, because she immediately had a leak, and I watched. I found it a very strange thing. When I was 17 I had seen and cared for a urostomy in a nursing home, but that was very different according to my memory. There no red “thing” was sticking out. At first I though that it was due to the operation and would go away for Lynda, but that was not the case.
I am a talker, so I don’t keep it to myself that my sister has a stoma. In the beginning I kept it from people we vaguely knew (for example the people of the Hazes Choir), because I did not want to embarrass Lynda. Later on Lynda became more open about it herself, so I don’t have to keep it to myself any more. Everyone who knows me, knows that my sister has a stoma, which I find fine, because then I can also talk about it openly.
I believe she rarely has problems with her intestines now. It is good for her that she can have a pleasant life in this way. Annoyingly she often feels sick, but if this is due to the stoma, I don’t know. She must now ensure she does not sit out in the sun too much, because naturally she loses a lot of fluid and salt. She cannot go spontaneously to the beach. She should always have water with her, wet wipes and changes of material, but I don’t think that causes her many problems. I think the biggest stumbling block for Lynda is the mental side, which only appeared after a half year. For the rest I just see my sister as Lynda, and not a Lynda with a stoma.
My tip for people who have to deal with an ostomist in their environment: be open. It is no disgrace to have stoma. I sometimes still feel there is a taboo about it. As a non-ostomist I cannot say much about it, but I think that for most people a stoma is a relief. If you see how people respond it to, then you can only think one thing, it is good that stomas exist! Otherwise things can often go wrong.
I just want to say one thing. I am the proud sister of a brave, tough girl, who is trying to pick up her life again thanks to her stoma."
The story of Margo, her mother got a stoma:
"My mother got her stoma on 20 May 2004, when I was 13 years old. The reason for her stoma was an ileus (closure of the intestine) which she got following an operation on 30 January 2004 with a short session of radiotherapy prior to the operation. The irradiation and operations were necessary because my mother had rectum cancer.
I remember well that it appeared to me my mother was much more often tired than previously. She already had a little blood in her stool but we were not really concerned. My mother went to the doctor who referred her to the hospital for investigations. The day before the investigation, one week later, it became too much for my mother and her feelings came out that she feared it wasn’t good (the word cancer had not yet been used). The following day it took a long time before she came home again. I remember well that we were sitting watching the TV and asking ourselves where she was. My father was on the verge of cycling to meet her but when he went outside she arrived. When my parents came in together I could see on their faces that there was something the matter, my mother had been crying. They quietly told me that there was not much known yet, just that an operation was necessary. I immediately linked the cancer to death.
In one week there were a lot of investigations done to know precisely where we were, and what should happen. In front of the family we kept everything quiet until we knew with more certainty that there was no reason to panic. Then it was waiting for irradiation and operations. I also went once to the irradiation. You cannot see anything of it but it is good to have a presentation of what is going on. She was operated on January 30th 2004. The day before the operation I visited with my father. It was very hard to say goodbye, it was the first time that someone close to me had had to have surgery. I was afraid of what it was and how things would work out. On the day of the operation I went to school, I still remember that I was watching the clock all the time to see if “they must surely be almost done now”. The recovery went well, there was just one set back (fever). In the hospital every day for 15 days another piece of equipment was removed. When she returned home it had been several months. I then thought: it is over, the cancer is gone and nothing can go wrong now. Within 6 weeks of the surgery chemotherapy began (6 x 1 week).
Because my mother never complained we did not realise something was wrong. She lay in bed and was very sick; she had a belly as if she was 9 months pregnant and had a lot of pain. After a couple of times of contact with the doctor he came along and immediately sent her to the hospital. She was admitted on May 14, 2004. I still remember visiting that evening and my mother had a stomach tube. Then there were lots of investigations and also one emergency operation to try to let the stool run/press out, but that did not succeed. Eventually on May 20th (Ascension Day) was the stoma operation. When I heard that mother was getting a stoma, I had no idea what it was. Mother then explained it and drew a small diagram to give me a picture. I was not really shocked, I think because it was so unexpected and because mother already had a lot of pain, anything is better than pain. When we heard that mother had cancer, the blow was much harder than when we heard that mother was going to get a stoma. We just thought then that it would be a temporary stoma, but meanwhile it has become a permanent double looped stoma.
I did not see the hospital period as a scary time, because my mother was getting better every day. We went every day to the hospital. I didn’t find the ride up and down so bad, although it was a rush: leave school, eat quickly and then immediately to the hospital. But you don’t think about that at the time. I didn’t find the stoma scary, you could see it well because it had a clear bag over it. I also think so because I had seen my mother lying there in January with all the bells and whistles. The first days heard/worked the stoma not at all, then it was funny, especially when I heard it fart for the first time.
Meanwhile I have seen the stoma many times. I saw it already on the day of the operation, although it looked strange the because everything was newly made and very swollen. I found and find now the stoma is not scary. It is normal and we know nothing else. Even now when mother cares for the stoma and I am also in the bathroom then I sometimes look or mother asks if it is on correctly.
In the beginning when mother had just got the stoma only the people closest to me knew, so only my closest friend and my class mentor. If people ask me what is the matter with my mother, then I explain it, but I won’t just blurt it out. I am not ashamed of it but some people take against it sometimes. The positive thing is that the closure was resolved with the arrival of the stoma, without the stoma mother had no life. There are actually no negative things for me, because with a stoma you can have a good life and do nice things. For those who have a stoma, it is always important to make sure you have your things with you.
My tip for people near to those who have to get a stoma is: just remain yourself and certainly do not lose your sense of humour, a stoma is not the end of the world. Be open and to not be afraid to ask things of the stoma patients."
The story of Linda, her partner
got a stoma:
"My partner with whom I had been for 15 years, got a stoma in August 2004. I was then 28 years old. We live together with our 2 children, 2 cats and an aquarium full of fish. The reason for the construction of his stoma was that there were hundreds of polyps in his intestines and rectum, which were not removable from the intestines. There was also a tumour the size of an orange in the area of his small bowel. A large amount of small bowel had to be removed as well.
He did not have a long sickness period, apart from complaints similar to irritable bowel syndrome. When he suddenly began to lose weight (5 kilos in a very short time) and began to look gaunt in his face, he went to visit the doctor. When we finally got to hear he had a disease, everything went so fast, that I had little time to stand and think about it. In February we heard that he had FAP (Polyposis coli), and he had already been operated on in August. Those months were very difficult and intense, because we were constantly being told yet more should be removed. First the GP said it would be a piece of large intestine. The internist said that the whole large intestine would have to go, but the rectum would remain. Then from the surgeon we heard that the rectum also had to go. The investigations were all very significant and annoying, as a partner you can do very little apart from be there for him. I often felt powerless and sad.
What I particularly had a lot of trouble with was that out daughter was only 5 months old when the disease was discovered. I wasn’t so well after the first 2 months after her birth, and then we had 3 months of being on cloud nine, until after the diagnosis falling back into a black hole. I found the two separate feeling so difficult; to be so happy and pleased with our daughter, and then so scared and sad for what had happened and was happening for my partner. I lived on automatic pilot those months, and discounted myself to be there for my partner and child.
The intention was that he would get a pouch. Maybe a temporary stoma to relieve the pouch, but there was never talk of a permanent stoma. However during the operation the say the large tumour in his small bowel, so it was decided on the spot that he would have a permanent ileostomy. Therefore we had no preparation for this, had read nothing about it, we were totally unprepared for a possible stoma. Therefore before the operation I had not thought about a stoma.
I found the hospital admission day one of the hardest days. My parents in law went with us to take him to Amsterdam, which was an hour and a half drive away. I was so nervous that day, and also very scared and sad, because I was also afraid that he would not wake up, and I would remain alone with our little girl. The farewell was quite heart rending. His parents had already gone down, and we stood by the lift to say goodbye. I shall never forget how he stood there alone when I stepped into the lift, the look in his eyes and then the lift doors closed. You feel so powerless then, that you cannot stay with him that day and during the operation, and I cried a great deal. My daughter and I stayed that night with my parents (our son was not around then), and then on the day of the operation went home again.
EThen began the long wait. The operation lasted much longer than planned, so we had to wait much longer for the revealing call from the surgeon. Then you know that something has gone wrong. I also found it difficult to see him with all the tubes and apparatus, and so tired. I also found it hard to watch the complications. He remained sick and in much pain for the 10 days afterwards, but he was still sent home after 10 days (we heard later on that the inflammation values in his blood were too high). In the 10 days that he was at home, he just felt worse and worse and lost 20 kilos. It appeared he had a leak inside. He was admitted to hospital again for another 10 days, and 1.5 litres of fluid, blood and dirt was removed through a drain. I slept by his side for 3 nights because he was physically and mentally exhausted. Then I had to go home to my daughter, and had to leave him behind again. I also found it very intense. Fortunately he recovered in that 10 days, and so he came home again, so that he could finally recover.
Actually I accepted the stoma straight away. We had already been together for 15 years, and by then an outer appearance does not matter much. Another factor was that I worried more about all the complications that he had. That he was ill, and he wasn’t well emotionally, because he was upset about his work, played a role in the months before his operation. The only thing that recovered well and worked properly was his stoma, so that certainly helped with the acceptance. The difficulties with the stoma were the leakage moments, and the times when everything he drank went into his stoma bag rather than his bladder, causing dehydration a couple of times, and had to have an infusion again.
That he got a stoma was a big shock, and I had to tell him the day after the operation because the doctors had no time to come and visit. That was a difficult task. I did not want to tell him crying because he would be more scared, so I had to fight against the tears. But we both thought: okay that’s how it is and we will try to make the best of it.
I have seen the stoma a number of times. It was just getting used to it in the beginning, a piece of intestine from his abdomen. I was allowed to watch in the hospital how the base-plate and bag were cleaned, so that I could help him. I helped him a couple of times at home, and slowed gained confidence. Now it is just a part of him, and he cares for it totally by himself.
I have always been open about it if people ask or want to know something, but I don’t tell strangers. Not for myself but for my partner. I think he must decide for himself if they should know or not. But I have been open with out family, friends and colleagues; they can ask anything and get an honest answer.
The positive thing about his stoma is that he is no longer sick after eating certain food stuffs. In the beginning he was sick after eating too spicy or too fatty foods, but over time he also became sick eating other ordinary foods. In principle he can now eat everything without problems. Negative changes are the occasional leaks (especially in public) and once he had a bad obstruction, or 2 days with nothing but water in his stoma bag if he had eaten something different. Then you start to worry again, because he gets very sick form both of these.
My tips for people who have an ostomist in their neighbourhood are: try not to see people with a stoma as different as if they didn’t have a stoma. Or if you meet someone with a stoma, try to find out some information from the person themselves, or the internet. A stoma is not dirty, so I hope that ostomists themselves try to be a little open, to bring it out of the taboo area. Certainly you should look further than the stoma; otherwise you could miss out on a great friendship or love. Just ask about it, most people prefer you to ask, then quietly ignore it and create a tense atmosphere. Humour is often the key to open doors!
I could write a book about everything that has happened but this is just a bit for global consumption."