Maud’s 20 percent of her colon — which is about two feet long — is inflamed. “I was prescribed enemas as medication. I had to put it in every night. But that doesn’t make you fitter and it hurts. I did this for months on end, but at a certain point I noticed that it no longer worked.”
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Obstacle
In addition, a daily enema is also a huge hindrance to Maud’s freedom. “I couldn’t just sleep over with my boyfriend or girlfriend.” Since it doesn’t work either, the 20-year-old visits her doctor and asks about new medication.
She is given the anti-inflammatory drug mesalazine – in the form of granules for oral intake. “I started with one sachet of two grams, but that did not provide relief. I still had mucus, cramps and blood. Eventually I was allowed to double the dosage and that is going well so far. It does not mean that I am completely rid of my problems, because the drug also has side effects. For example, I have little energy, still mucus in the stool and lots of cramps. It’s like having menstrual cramps, but more intense stings.”
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Check-up
Due to the medication that Maud is currently taking, she has to go to the hospital every six months for a check-up. “The grain can damage your kidneys. Every six months I have to go for a blood test so that my values can be checked. I also talk to the doctor about how things are going. I always prepare some questions that I want answers to.”
There is little that can be done about the fatigue she experiences every day. “I do yoga and mindfulness, so that I experience less stress. I want to start exercising again soon in the hope that it will give me energy. For now I’m not ready yet and limit my movement to walking and cycling. It’s the only thing I still have a little bit of energy for after a 32-hour work week.”
Invisible disease
The diagnosis did not bother Maud. “I thought, ah, shit – literally. I’m fine, this belongs to me. But that doesn’t mean that sometimes I don’t think: why?”
Ulcerative colitis is not an inflammation that you can get rid of after a few years or that is visible. “Not everyone understands that. I have two girlfriends who know that if I cancel it’s really no different. There are also others who do not understand that or people who say that they sometimes have stomach aches. Trust me, it’s not the same. Before I leave home, I go to the toilet five times for fear of having to leave the house. I’m just much more concerned with how I feel than someone who is just in pain for once.”
Power supply
It is not clear whether certain foods aggravate Maud’s complaints. “I try to stay away from soy, alcohol and fizzy drinks. I don’t like eating too much sugar either. In addition, I don’t eat onions and I’m currently trying out whether tomato does something to my intestines. It’s hard because sometimes I eat something and I don’t know what was in it and it makes me feel bad.”
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Gastroenterology Foundation
Even before Maud knew she was ill, she was walking around with a collection box from the Maagleverdarm Foundation. Since her diagnosis, her contribution has taken on an extra layer. “I enjoy working on it. Recently I raised over 700 euros by walking for the foundation. My involvement has brought me a lot, in a positive way.”
In addition, she is also in a WhatsApp group with other people with an intestinal disorder; Crohn’s or Ulcerative Colitis. “I wanted to connect with people who were going through the same thing.”
Future
“I am afraid of what the future will bring me. It can continue to go well, but it can also get worse. You have a chance of cancer or a stoma, not ideal. But if so, so be it. I just have to learn to deal with that. A stoma can also solve a lot of misery for you.”
For now, that is nothing that Maud has to worry about, because the medication ensures that it is relatively quiet in her intestines. “I have no influence on what happens later, I will see. For now I don’t want to let it hinder me and do what I want to do.”
Advice
In conclusion, Maud would like to give readers some advice. “For me it started as something small, but this turns out to be a chronic inflammation that I will have to live with for the rest of my life. People don’t realize they only have one gut.
So if you have complaints, go to the doctor. Don’t hesitate, even if you feel like you’re acting up. Maybe something is going on and you are much further from home than you had hoped by waiting.”
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2023-08-16 10:25:04
#Maud #chronic #intestinal #inflammation #Ulcerative #Colitis
