"I was hospitalised from the start of September to the middle of January.." Navigating an extreme medical journey - finding the good amidst chaos. - Lovisa's story.

I’m Lovisa, I’m 18 years old and this is my story. 

I was completely healthy until one day when I wasn’t. I presented with a stomach bleed followed by extreme nausea, pain and vomiting after food intake. No doctors could understand what it was. I had so many tests and examinations done but everything looked normal to them. My condition slowly progressed and two years after my first symptoms I was unable to eat or drink anything. I went into the ED and I got admitted. Thankfully for me there was a doctor at the ward who thought that this wasn’t normal and she sent me got a CTA. On the CTA they saw that two of my arteries were too close together and was compressing my duodenum. My extreme pain and nausea and vomiting after I had eaten wasn’t strange. It wasn’t all in my head. There was actually something wrong with me. 

The condition they diagnosed me with is called Superior Mesenteric Artery Syndrome (SMAS) and it’s a very rare condition. My doctor came up to me and said that they needed to place a tube into my small intestine and feed me that way to help me gain weight. The hopes were that the compression would solve on its own if I gained weight. I got a surgical tube they went into my stomach and had a long tube that they placed down my intestines. It allowed me to drain my stomach and to get fed into my small intestine. For 6 months I had this tube but the problem was that I wasn’t gaining any weight, I was loosing weight rapidly and the doctors couldn’t figure out why. 

Instead of trying to find out why, contact other doctors or refer me to someone else…They accused me and my mum of manipulating them and causing this by ourselves. They basically locked me in at the ward, I wasn’t allowed to go to the bathroom by myself, I wasn’t allowed to take a walk or anything. They had the same results, I kept loosing weight. I thought the torture would end here but it didn’t. They decided to feed me into my stomach, I was crying and screaming in pain and constantly throwing up. For a week they kept doing this to me until a nurse told them to stop torturing me. I contacted the surgeon who had placed my surgical tube and had replaced it a few times and asked her for help. I knew she had seen how compressed my duodenum was from inside so I was hoping maybe her words would be taken seriously but I was wrong. They did though agree to that this surgeon could place a new so called GJ tube on me. When she was doing that she noticed that my stomach contained food and so did the forts portion of my duodenum even though I had been fasting for over 27 hours. She said to my doctor that that wasn’t normal and it needed to be looked further into. I had a test done to determine how my stomach emptied. The results on that one showed severe gastroparesis.

Gastroparesis is a condition where your stomach is partly or fully paralysed, in my case it is almost entirely paralysed. My doctors refused of course to take this for what it was and they said I only had a slow gastrointestinal motility…they removed my tube and I was forced to eat. They also sent a report to the child protective services where they accused my mum of having Münchhausen by proxy (child abuse by faking and/or cause real symptoms to make the child look sick). The child protective services took me away from my mum. And for 2,5 months I was forced to live with strangers. I was also forced to eat which resulted in pain and vomiting. I got really ill and I fainted and wasn’t feeling well at all but they refused to take my to hospital since they believed either me or my mum was making me sick. Eventually I got to move back home after they had ruled out that my mum was making me sick. For 8 months I was forced to eat and throw up, I lost around 20kg and I was just skin and bones. 

I got to see a professor in gastroenterology who believed me and told me I most likely have SMAS and he was convinced I had other vascular compressions as well. When I showed him my body after a few appointments with him he compared me to the children in concentration camps, that’s how skinny I was. He decided I needed to be put on Total Parenteral Nutriton (TPN) that’s basically getting fed through your blood stream and I had a subcutaneous veinport put in. He also sent me to a vascular surgeon. He wanted to do an ultrasound to look for more compressions. On the ultrasound they found two more compressions. One of the celiac artery and one of the left renal vein. I was put on TPN in June to gain weight to see if the compression of my duodenum would resolve on its own if I gained weight.

In September I got a fever and it turned out that I had sepsis. They needed to quickly remove the subcutaneous veinport. They treated me with antibiotics and after a few weeks they put in a Hickman line which if another form of a central line. I had it for a week before I once again had a fever. I went into the hospital and they found bacteria’s in my blood. I had another sepsis. This sepsis turned out much worse than the first one. I went into septic shock, my organs were failing, my bone marrow was completely out, the infection level in my bloodstream was up to the roof, my lungs filled with septic embolisms and fluid. I couldn’t breathe. I was spiking a fever so high that I multiple times a day started cramping. After that no one dared to put in a new central line. Instead I got a GJ button placed. There was only one problem, since I was forced to eat and throw up during those 8 months I mentioned before, my stomach has dilated so much that the tube would only flip back up in my stomach. They had to place a separate J tube. 

There was so much troubles with it. I developed infection after infection. While I was admitted they performed a new CTA and also a barium study to see how bad the obstruction of my duodenum is. Since I had gained weight and had reach my goal weight the wanted to see if the compression of my duodenum and my renal vein had dissolved. Unfortunately it looked the same on the CTA and the barium study showed no passage while standing up and minimal while laying down. This meant that I need to have surgery to correct the compressions. I was hospitalised from the start of September to the middle of January. Now I am home, I have hospital appointments multiple times a week but at least I get to sleep at home. I’m waiting for major abdominal surgery to correct all of the compressions. The only problem is that this is so rare that the surgeons here in Sweden don’t have the experience. So the question is, can they perform a surgery like this? 

My experience of the health system and interactions with the people who work in the healthcare system has been really mixed. I have met incredible people who have gone above and beyond for me. Who have done things for me that’s been far more than their jobs. I will forever be grateful to those. I have also met the most awful people who have treated me like I’m not worth anything. People who have created trauma within me that I will never be free from. But I’m trying to focus on the good ones I’ve met. 

My best advice to cope with being chronically ill, is to:

1. Reach out to other people who are going through something similar. It will make you feel less alone and you will learn from each other. 

2. Try to find joy in the little things. The world is a beautiful place, sometimes you just need to open your eyes a bit more. 

3. Focus on what is best for you. Don’t feel bad for cancelling plans or not having the energy to do things you said you would do. 

4. Surround yourself with people who love you for you. 

But most importantly of all is to always remember that no matter what you’re going through or what your life now may look like, is that your worth hasn’t changed. A lot about your life might have changed and will change but your worth remains the same. You’re worthy of love, of care, of kindness and of respect. And if anyone treats you as if you weren’t worth more, tell them goodbye. You don’t need them. And remember that it’s okay to rest. Did you know that butterflies rest when it rains because it damages their wings? It’s okay to rest during the storms of your life. You’ll always fly again once it’s over. Don’t damage your wings. Just keep on being the beautiful and amazing you! 

Sincerely and with love,

Lovisa