Childhood and Adolescent Encopresis Alliance
Supporting children, accompanying families
Experiences of families on the path of Encopresis
This space is for mothers and fathers who are currently experiencing encopresis with their children. We know how difficult, lonely, and exhausting this journey can be. Here we share real stories, told from the heart, with the intention of offering support, a virtual hug, and reminding you that you are not alone and that, with support and understanding, you can get through this.
Reaching Adolescence with Encopresis:
Testimony of a family from Bolivia with a son who reached adolescence with encopresis
Our Family's Experience with Encopresis: I want to share something very personal because I know how difficult it is to talk about this. Perhaps it will help some people, perhaps someone will feel less alone reading it, because when you go through this, you feel very alone. We are the parents of a 13-year-old boy who has dealt with encopresis practically since he was a baby. It's a strange, little-known word, and it's incredibly difficult to talk about it, even with close friends and family. But here I go, with complete honesty and from the bottom of my heart. Ever since our son was a baby, he had trouble defecating. Sometimes 10 days would go by, we would see him uncomfortable, suffering, and the pediatricians would tell us it was normal because he was breastfed, that there was nothing to worry about. So we got used to it. But everything worsened when he had to switch to formula and, especially, when he started daycare. That's when we noticed significant changes. He was about to turn two, and his brother was born. I had to stop breastfeeding during my pregnancy, we started formula, expenses multiplied… and at daycare they told us it was time to potty train him. Our inexperience made it seem like a good idea at the time, for logistical reasons, for financial reasons, because of everything that was going on. The problem is that the method they used there was very abrupt. A teacher assured us that he would be diaper-free in a week, and that if they took him off, they would never put him back on. And between that, the arrival of his brother, the changes at home, the new environment… we felt it was all too much for him. He started to be afraid of sitting on the potty and going into the bathroom. He would hide, hold it in for days on end, cry. We did what we could: suppositories, glycerin, special diets, papaya, prunes, olive oil, water… Some doctors didn't think it was serious and told us it would pass. Years went by like that. Years of pediatricians, gastroenterologists, x-rays, diets, suspected celiac disease… and nothing. The accidents became daily. And then came the hardest part: the emotional toll. Sometimes we parents were patient and understanding, and other times exhaustion overwhelmed us. We didn't understand what was happening. We said things to him that now, with a calmer heart, hurt me. We thought he "didn't want to," that it was neglect. But no. It wasn't that. And as the years went by, he suffered a lot. And so did we. I often locked myself in my room to cry, not knowing what to do, feeling like there was no way out. I searched online, read testimonials, tried to understand… but I still felt lost. Until one day I found the Alianza Encopresis website. And that's where what I feel was a turning point began. The beautiful thing was that as soon as I started following them, they contacted me. They asked me who I was, how I had found the website. I hesitated to respond because it was such a personal matter, but I did. And I received such warm, such heartfelt messages… that I felt someone, for the first time, truly understood what we were going through. We talked, shared stories, cried… And Luisa, from Alianza Encopresis, offered me help. She helped me contact an incredible doctor who, although she didn't live in my city, supported us virtually for months. She took the time to learn about my son's case, to care about him, to truly guide us. She ordered x-rays of his abdomen, and we had to give him enemas—which weren't easy at all, because he was already a preteen and felt very uncomfortable—but they were necessary to understand what was happening inside, to empty his bowels, and to start over. From there, we began a treatment: daily bowel movements and the use of a natural laxative (sennosides). And since then, he goes to the bathroom every day. We've been gradually reducing the dose, and although he still depends on those laxatives, our lives have completely changed. Today, I see my son happy, more confident, without the emotional and physical burden he carried for so many years. He's no longer afraid to travel, go to sleepovers, go to school… and we can breathe a sigh of relief too. This past year has been the first with true peace of mind. This week, after months of virtual consultations, we'll finally meet the doctor in person. It's exciting. She, Luisa, and the entire Alianza Encopresis community have been a beacon of hope for us. That's why I want to tell you, from the bottom of my heart: you are not alone. This problem affects the whole family; it's very difficult, but you can overcome it. Find a community, talk, share what you and your children are feeling. Keep seeking emotional and professional support. We suffered for many years, and only now are we seeing the light. But it has arrived. And that's why I truly believe that it is possible and that we must never lose faith.
Our experience with Encopresis:
Testimony of a family with a daughter who was diagnosed with encopresis at age 4
I am the mother of a girl who began showing behaviors of not going to the bathroom at the age of 4. She had stopped using diapers without any difficulty at 3 and a half years old, in less than two months. Everything seemed fine, but a year later, when she was 4 and a few months old, behaviors began that had no clear explanation: she wouldn’t go to the bathroom, she would soil herself, cross her legs, and sit on the toilet stretched out. She started having bowel accidents many times a day. At first it was 4 or 5 times, until there was a day when she soiled herself 17 times in a single day. I didn’t have enough underwear to keep changing her. All of this happened in the middle of the COVID pandemic, in a context where no doctor prioritized our case. As parents, we didn’t understand what was happening. Our daughter would soil herself several times a day; sometimes she wouldn’t go to the bathroom for days and then suddenly would pass a very large fecal impaction. Her primary care doctor ordered general tests and celiac disease testing, but no clear cause appeared. She was prescribed laxatives, but we didn’t see any results. We also did food elimination trials to rule out intolerances, without getting any clear answers. Months went by and we were still without a diagnosis. The situation was getting out of control. We didn’t know if she didn’t want to go to the bathroom, if she was doing it on purpose, or if there was something else going on. She would soil herself and stay that way, sitting, without being bothered. She didn’t feel the smell or the discomfort of being dirty. She told us she couldn’t feel it, and that confused and distressed us even more. The uncertainty as parents was overwhelming: how could she soil herself and not feel anything? And above all, the constant fear that it might be something more serious. A year later, still without a diagnosis, she started school. We didn’t know how to handle the situation, but thankfully the school supported us from the very beginning: they took her to the bathroom, changed her when necessary, and asked us to send extra clothes in case there was more than one accident. When the diagnosis finally came—one and a half years after the symptoms and overflow began—we were referred to a specialist. However, there was a waiting list. We sought private care, but we couldn’t get appointments there either. We spent almost two years without appropriate medical treatment, and it was desperate. Two years after this situation began, we finally managed to have a medical consultation. There we were told what encopresis was and started treatment. Although at first it seemed to be going well, over time we didn’t see real progress. We stayed with that medical team for two years, and at the same time we began looking for second opinions, especially because our daughter was extremely exhausted and stressed by the whole process. She also began therapy with a psychologist to help address her fears, reduce shame, and support her emotionally. We were given a letter for the school so they could help with the bathroom routine. As a family, we learned how to better support her and understand what she was going through. However, since we were not seeing results and noticed that our daughter no longer felt comfortable with that medical team, we decided to look for a new professional. It wasn’t until January 2025—five years after encopresis began and three years after starting treatments—that we found a doctor who truly understood our daughter. He explained the processes clearly, the importance of a bathroom routine, and the gastrocolic reflex. He warned us that the process would be long because her colon was dilated and that there could be staining until everything returned to normal, but he also gave us reassurance, clear information, and concrete tools. Thanks to that doctor, the correct information, and our family’s commitment to following the treatment and bathroom routine, our daughter began to improve. In the very first month we saw very positive results: not only was she able to go to the bathroom and have bowel movements in the toilet, but she also felt emotionally better and much less stressed by the process. One year later, she no longer takes medication and no longer has accidents. It was a turning point. Today we continue to support her with the routine after meals, but she also goes to the bathroom on her own when she feels the need. Today my daughter does not have encopresis. I especially want to thank the last doctor we saw, because he was key in helping us move forward. I also want to thank the school, which from day one was an enormous support and became our second family, helping in everything related to my daughter and her encopresis. And above all, I want to thank my little girl who, despite living with this problem for five years, was able to express what was happening to her and how she felt. We listened to her, and together we moved forward. Even though my daughter is well today, I don’t know if I will ever fully recover from this experience. Encopresis is lived by our children, but it affects the entire family. It is a taboo subject: people don’t talk about poop, there is little clear information, and many times parents feel helpless. It is difficult to find doctors who truly understand encopresis, who provide accurate information, and who can empathetically support families and young children. Family and social environments often don’t understand, which causes social circles to shrink. Even though my daughter is well today, I still feel fear when she has a stomachache or diarrhea. It’s hard for me to fully relax. I wish there were more conversations about encopresis, more information available, and truly multidisciplinary treatments, with medical specialists, psychologists, schools, and families working together, so that there is more support and containment throughout the process. It is a hard, lonely path with many setbacks, but I want to say it clearly: it is possible to move forward, and it is possible to improve our children’s quality of life.
From uncertainty to answers:
The journey of a family from Spain and the importance of finding the right treatment and feeling supported.
We want to share our story because we know how difficult it is to talk about encopresis and how alone we can feel when we experience it up close. We hope that our testimony can help other families feel understood and supported. Our son is currently 11 years old. The first symptoms began when he was around 4 years old. What was most confusing for us was that he had stopped wearing diapers some time before, and until then everything seemed to be going well. So when the problems started, we didn’t understand what was happening. We couldn’t put a name to what was going on, and that caused us a great deal of confusion and worry. For a long time, we went through very difficult moments. We visited all kinds of doctors, underwent every test that was recommended to us—neurological, psychological, food intolerances—and searched for answers in every possible way. However, time went by and we were still unable to find the real origin of the problem. It was only years later that we began to hear about encopresis. Although we were finally able to put a name to what was happening to our son, the treatments and recommendations we received did not fully work. This caused even more frustration. There were times when everything seemed to improve, when we felt we were finally moving forward, but shortly afterward the situation would worsen again. We felt as though we were constantly taking steps forward and backward. Over time, we realized that much of this difficulty came from not having proper guidance to show us the correct steps to follow. No one had really taught us how to face this problem in a comprehensive way, either from a medical or an emotional perspective. At one of our most frustrating moments, when we no longer knew who to turn to, we found the alliance. We contacted them immediately, and there we found something we had not had until then: understanding, clear information, and the testimonies of other families who were going through the same situation. Listening to their experiences helped us feel less alone and understand that we were not the only ones facing this challenge. Through the alliance, we were also able to connect with medical professionals specialized in encopresis, who helped guide us along the right path and, above all, helped us let go of many of the fears we carried within us. One concern was always on our minds: what would happen if our son continued to grow without overcoming this problem? How would it affect his social relationships? His self-esteem? His happiness? These were questions that kept us awake at night. Thanks to the support we received, we began to better understand encopresis and to face it without guilt, without blame, and with greater calm. We learned that our son was not doing this on purpose, that it was not a lack of willpower, and that he needed understanding, support, and appropriate routines. Today we can say that the situation has improved tremendously. We are finally beginning to see the light at the end of the tunnel. The implementation of healthy habits and proper routines has allowed us to make significant progress in recent months, and we feel very positive about the future. Seeing our son calmer, more confident, and happier is, without a doubt, the greatest reward after so many years of uncertainty and silent suffering. Our message to all the families who are going through this is, above all, one of encouragement and hope. We know how hard it is. We know the exhaustion, frustration, and fear that come with it. But with proper guidance, reliable information, and emotional support, it is possible to move forward and improve significantly. You are not alone. Asking for help is not a failure; it is an act of love toward your children and toward yourselves. And that help is what we found in the alliance. We have learned that, even though the road may be long, it is possible to move forward.