Thanks to her stoma, Inga can now live a largely normal life – free and without pain. She can go out with her dog, swim and soon do other sports again. But she had to fight hard for this and overcome many hurdles. She tells REHACARE.com what these were and where she still experiences discrimination in public today.
Name: Inga H. Age: 26 City: Duisburg, Germany Occupation: Gymnastics teacher, aspiring social worker Impairment: Familial Adenomatous Polyposis (FAP), Endometriosis, Adenomyosis and Post Traumatic Stress Disorder (PTSD) and more
Inga H.: Difficult question, because a good day is determined by so many different things and moments. I enjoy sunny, not too warm weather, but equally love rainy days when I can walk my dog in peace. Pain-free days are wonderful. Spending time with friends, eating good food, laughing a lot, observing small successes in "getting better". At the moment, I am enjoying every day that I can walk again. It is still like a miracle for me!
Which auxiliary means or daily living aids are indispensable for you?
Inga H.: I depend on my stoma care. So the bag on my stomach and a few additional products to protect my skin or to have an ideal supply. Products like skin protection spray, special powders and pastes. As I have an artificial bowel outlet, my stoma care is indispensable and allows me to live a "normal" life. I can go out, swim and soon do sports again. I don't have any other aids at the moment, but due to my limitations I depend on help from friends and family.
What would you like to see from society and your fellow people in dealing with people with disabilities?
Inga H.: I would like to see more openness, acceptance and inclusion from society, and ideally more engagement with the diversity of disabilities and limitations.
Especially invisible disabilities are difficult to understand or incomprehensible for many people because they are not "tangible". I walk through the world looking healthy. Then when I go into a disabled toilet, I am often looked at with wide eyes. In education, I experience discrimination again and again, and fellow students may ostracise me because of my absences. In the leisure sector and even in rehabilitation clinics, discrimination against stoma users is more frequent, for example, when they are denied access to swimming pools. All this and much more would be reduced by openness and information.
I wish that access to various shops, doctors etc. would also be granted to people who are dependent on an assistance dog and that there would no longer be any access problems.
Furthermore, I wish that fellow human beings would no longer behave in an encroaching manner towards people with disabilities. One may and should offer help if one has the feeling that a person with a walker, for example, could use help. But no one should simply intervene – emergency situations excluded. Respectful interaction is the be-all and end-all and should be a social goal!
Which assistive device would urgently need to be invented and/or improved?
Inga H.: I think wheelchairs that can overcome any obstacle would be a brilliant invention. On the subject of stoma care, a filter that really gets all the air (odourless) out of the bag would be brilliant. Otherwise, I would like to see assistance dogs funded for anyone with needs. Aids, whether living or material, are too often dependent on the wallet.
Inga H. wears her stoma openly – like here at the beach. Because it gives her back a quality of life that she lacked for a long time. And so she can once again lead a largely self-determined life and even go swimming in the North Sea in December if she wants to.
What has been your biggest challenge so far that you have mastered – and what has helped you?
Inga H.: It feels like my whole life is one big challenge. I have already fought for my life and fought my way back into life through operations with many complications. I am currently on this path again, although my life is characterized by change. At the moment I'm in a bit of limbo – due to illness, inability to work and uncertainty about how I can finish my studies.
What helps me on my way? My social environment, voluntary work in self-help, animals, nature as well as great doctors and the knowledge I acquired during my studies (especially knowledge of social law).
If nothing would be impossible: Who would you like to meet one day and why?
Inga H.: Jürgen Dusel (Federal Government Commissioner for Matters relating to Persons with Disabilities), to talk to him about a few grievances and possibly move something forward together.
What I wanted to say ...
Inga H.: For many people, living with a stoma is unimaginable. For some it is even an absolute horror. Therefore, I would like to invite you to a short change of perspective by telling you my desired stoma story:
I got my stoma last year on request, because I had unbelievable pain when going to the toilet as a result of an operation. I was almost keeling over in pain about 15 times a day – and I am not a pain-sensitive person. If I hadn't made it to bed in time, I would have passed out too. It took time for my circulation to recover from the pain each time. On top of that, I had faecal incontinence. Due to the operation and the very liquid stool (I live without a large intestine and part of the small intestine is also missing), I couldn't hold my bowel movements properly. It just ran down my pants in bed or on the way to the toilet.
I didn't want to be discharged from hospital like that. I was finally forced to refuse all food and liquids, because this was the only way to reduce my pain. Pain management? Didn't really exist in this hospital –hence the PTSD, among other things. I cried a lot and didn't really want to feel my life anymore. Without a stoma, I could no longer see a future because of the discomfort. Crying, I said to the doctors for the first time, "I want a stoma". I could hardly get any more words out. A few days later I got my desired stoma: no more incontinence, no more pain, no more sore bottom. Freedom and mobility. Participation in life!