Families

When my mom was first diagnosed, I remember it being in every conversation and every family gathering for 4 to 5 years. After that, and as I grew older, it was always in our minds but I personally had gotten used to it. I didn’t notice the daily struggles because it had become a part our lifestyle and we had taught ourselves to live together with the disease. When mom was first diagnosed, I didn’t understand what Crohn’s was. I only understood that she would be sick forever. It was in the following years after diagnosis and once I was fully an adult, that I started to understand what it really was, not just the changes it caused. I can still remember times when we were scared and I didn’t want her to go to the hospital again. When I was around the age of 20, I was finally fully aware of what was going on and I wanted to become more involved in treatment conversations and everything regarding my Mom’s decisions around her disease. In general, I can say that I struggled a bit in puberty to come to terms with what was going on in our lives. But thankfully I always had the opportunity to ask questions and have the answers immediately, because my parents were always talking about it and never hid it from the world.

I have to say that it’s everything. It starts from going along with her to the hospital when she has a flare and continues with supporting her in following her dreams and hobbies. Also, I don’t think of her as someone disabled. I include her in every crazy thing that I want to do like going to a protest because I think what matters most is what your closest relatives think of you.

I think we always were normal besides the fact that my mom has Crohn’s. All families have struggles and difficulties. We didn’t have to do anything differently than others. We would still eat together like all families, go to the movies, go shopping etc.

I think that when she got diagnosed, she became even more crazy. She adopted the perspective that we only have one life and she wanted to live every moment. I saw her do amazing things after being diagnosed, like going on vacation to the United States, getting not one but two university degrees and many more things. She never let her disease take control. She was always the fun mom that all my friends liked, the one who would dance with us, watch movies with us, cook dinners for us and take us to fun activities. I hope that I can also adopt this lifestyle as I am getting older and never stop doing things no matter my age or health condition.

I think she helped herself. She always had a strong character and most of the time she got what she wanted even before the disease. She never let anyone decide anything for her and that’s how she managed to get through everything. I am sure that my sister and I played our part. We never described our mom as someone who is sick or treated her any differently. She was still our mom who loved us, celebrated birthdays, danced with us and cooked meals.

It would have made a great difference if we were paying more attention to ourselves and our loved ones. But the government should also inform doctors and hospitals better. If all of this were followed, we would prevent many tough cases like ours.

It is not the end of the world. You still have your family and your life. Make plans with them. They can follow along and do what a healthy person can do. It is usually OK.

My mother has Crohn's disease. She was dealing with it on a regular basis until I was 18 years old and then intermittently after that.

I didn't know much about the disease. Even though I didn't have a very clear idea of how serious it was, I was very relieved that we finally had a diagnosis. The scariest moment of this process was undoubtedly the moment before the diagnosis. I was extremely worried because we didn't know what was happening. I watched my mother lose weight for no apparent reason and thought of the worst-case scenario.

As I said, the biggest challenge was the lack of diagnosis. After the diagnosis, there was the indication that surgery was needed. For someone who has never had surgery, as was the case with my mother, the news that surgery was inevitable was difficult to manage, especially with some of the (more or less probable) risks associated with it. After that, the hard part was realizing that the disease hasn't “gone away” and that relapse and flare ups may arise again.

I thought it might be useful to get involved in the process. I felt that sharing the best and worst moments of the clinical process would be a good way of relieving her. I also tried to create future projects that she could look forward to, such as planning trips.

The hardest part was keeping my mother motivated. Crohn's disease can affect people on a daily basis, creating feelings of frustration in the medium and long term. This is especially the case when crises occur during special moments, such as on a trip or during a family celebration. At such times, I didn't know how to cheer her up. The truth is that food is not only a physical necessity, but also a moment of sharing and celebration between those closest to us. Once you realize that food can be a risk factor and worsen your symptoms, it significantly takes away from these moments.

My mother was diagnosed very late, so there was a lack of information and understanding about what could harm her, particularly in terms of diet. She thought she should eat a healthy diet with fruits, vegetables, etc., but many of these foods are actually not recommended for Chron's patients with small bowel strictures. She could also have avoided the anxiety associated with not knowing about her state of health.

In my opinion, one of the main objectives should be to support Crohn's patients mentally. The disease is very frustrating because of the ups and downs that patients go through. Keeping them psychologically supported is very important to motivate them throughout the process of managing the disease.

I am the mother of two beautiful and strong girls both living with Crohn’s disease. My oldest daughter has had Crohn´s for about five years. My youngest daughter has had it for nearly a year. Both of them were diagnosed in their teenage years, my oldest was 17 and my youngest 16 when they received the diagnosis.

My first reaction when receiving the diagnosis of Crohn’s disease was total shock. I questioned myself. Why did this happen? What did I do wrong? What did I do that could have led to this diagnosis? Is this my fault? I asked myself these questions for a very long time. I eventually learned to accept the diagnosis, but I was also very scared as I learned more about Crohn’s disease. Scared for my baby girls, their future and that they would have to depend on treatments and medication for the rest of their lives. At the same time however, I thanked God and all of the doctors and nurses at the Hospital Beatriz Ângelo who helped them to accept Crohn’s and their diagnosis in a positive and healthy way, with a careful and wise choice of lifestyle.

My biggest challenge emotionally is figuring out how I can best comfort my girls when they are having a hard day with pain, discomfort and when they are in a state of anxiety or stress. Crohn´s disease reacts to the nervous system. When someone is in a state of anxiety it is hard for a mother to always remain calm and to help her daughters to be calm. Somedays are hard. You can feel tired, angry and overwhelmed. I try to help them see that every day is a new day. Maybe today wasn’t a good day but tomorrow will be better.

The way I try to help my daughters is to give them the support they need to organise their lives with treatments, exams etc. I am a stay-at-home mom and do what any other mother would do who loves their children.

The fact that I am unable to take away the pain and suffering that my daughters go through hurts them and our entire family.

In order to be able to detect Crohn’s at an early stage of the illness, it is important to know what Crohn’s is! With my oldest daughter I did not know anything about Crohn´s. Her symptoms were hair and weight loss, lack of appetite, constant stomach pain, diarrhea and thrush in her mouth and throat. She did several exams and finally after a colonoscopy a doctor diagnosed her with Crohn’s. With my youngest daughter I was more prepared and alert. As soon as she started developing the symptoms of hair loss, lack of appetite, thrush in her mouth together with constantly feeling tired and having regular diarrhea I took her immediately to our doctor and started exams. Fecal and colonoscopy examinations led to the diagnosis. Nowadays with treatment and medication both of my girls are healthier than before and can follow their dreams and are surpassing the disease. Once again, I thank our hospital and all the doctors and nurses that helped us through this fight with Crohn’s disease.

The message I have to share with anyone who is dealing with Crohn’s disease, or family members of someone with Crohn’s, is that the reality is that Crohn´s is not a simple short-term diagnosis. It is rather a chronic and long-lasting illness. It is not easy but I have faith in God and in science, most of all in medication that can help my daughters and anyone who is suffering with the symptoms of Crohn’s to overcome and live a life with less pain and suffering. I believe in all the doctors and staff that study Crohn´s disease and hope for a better future for all.

Last but not least it is very important to please take a moment, stop, listen and pay attention to your loved ones. If they don't feel good or are having any long-lasting pains go and ask for a checkup. Talk to your doctors and see what's happening with them. This disease might seem “invisible” at first with many varieties of manifestations that can confuse you, but please don’t dismiss any red flags.