My story part 8 – 8/10 “nine months of hell…”

08/25/2013

This post is also available in: Norwegian Bokmål

As many of you might know I was admitted to St. Olav’s hospital for 9 months in 2010/2011, away from my kids and away from Daniel…

As many of you might know I was admitted to St. Olav’s hospital for 9 months in 2010/2011.

In spring 2010 I was admitted to Levanger hospital with very sick intestines, the disease was living its own life. I had enormous pains and lost several kilos. We were in Turkey when I realised something was wrong. Nearly over night I could see a bulge on my stomach next to the stoma. It kept growing and growing and was red and hot. I understood it right away, but I didn’t want to understand! I thought, no not again… I endured through our whole holiday and never told Daniel how much pain I was in because I didn’t want to ruin our first overseas holiday as a family. It wasn’t very easy, I had no energy and was in constant pain, so just “being there” and helping out with the kids was difficult. I think Daniel was slightly unamused that all I wanted to do was lie in the sun… But I had no energy and this was a great excuse to avoid suspicion. I could just pretend I wanted to get a tan! The fact was I was in massive pain and was scared to death of being admitted to hospital in Turkey.

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For a while I had had feeling that the doctors at the hospital in Levanger didn’t quite know what to do with me. I also didn’t get much follow-up in regards to check-ups etc. after my first doctor at the hospital left. Now I arrived with severe pains and very sick intestines. I could almost see the fear in the doctors’ faces. We had now reached a point where the doctors had “given up” on me and didn’t want to risk more surgeries on me, they were scared to. After consultation with the doctor and Daniel we agreed that I would be moved to St. Olav. I had very little intestines left and Levanger wanted to send me somewhere they could look at me with fresh eyes. That was completely fine with me as I felt Levanger had made enough mistakes by now! Retrospectively I have realised I probably had too many surgeries. They should’ve transferred me to St. Olav a few years earlier. But enough about that… I am going to try and share some of what happened during these 9 months at St. Olav. I can’t tell you everything because then PART 8 would be a whole book. I had so many episodes I feel nauseous thinking back on it.

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It became clear early on that this was serious, something I already knew but didn’t want to know. They admitted me to St Olav and put me on heavy medications to try and turn the disease. I had many tests and X-rays done. The X-ray pictures were unclear and didn’t give a good enough answer, so they wanted to do an ultrasound as well. That is when they found a fistula (an abscess from the colon to the abdomen) and they wanted to try and drain it hoping it would seal itself up when drained. Unfortunately the drain didn’t sit very long, so they had to operate another one in – a “wave drain”. This was a complicated procedure and required a lot of changing and care. I had so many needles put into arm (apparently my veins are difficult to find) that in the end I had to get a CVC (Central venous catheter) into a vein in my neck. I had to be sedated to do that, so I had quite a few rounds down to surgery and under sedation in the first weeks there! 

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The doctors decided they would wait for as long as they could before doing surgery on my sick intestines. They could see from the X-rays that from the stoma and 13cm into my colon were infected. I didn’t have much colon to go on to start with, so they waited for as long as they could before removing more of it. In addition I was struggling with an infection they couldn’t quite figure out. The weeks passed and it started to become both physically and mentally draining. The worst part was to be away from my kids and not being able to get away from the hospital. It all felt so never-ending… Always in pain and with the drain sticking out of my stomach with blood, slime and stomach content coming out of. The skin around the drain was burning and I dreaded every time they tended to it. They had to rinse the drain every other hour. That made it feel like the nurses were always in my room as it took quite a while to tend to the drain and the CVC. It was a very long and tiring process, but that’s just how it is.

Daniel and the kids drove from Hegra to St Olav to visit me every day. That felt nice for me, but must have been incredibly tiresome for them. I could see already then that it had quite an impact that mum wasn’t home. That I chose to be at the hospital instead of coming home to them. I could walk, so why are you here mum? Why don’t you want to come home? I cried from happiness every time they arrived and cried from sadness every time they left. It was incredibly painful, worse than everything else I had experienced before. But slowly but surely I got used to it 🙁

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The drain had to stay there until my body was ready for surgery planned for the 17th of August 2010. I was home for 2 weeks that summer while waiting for my operation. It was a massive process to get a nurse at home to look after my wound/drain. But after a lot of back and forth I finally got help. The local council was not willing to help, but a resourceful doctor at St Olav took care of it. I managed to go home. It was nice, but also scary to “lose” the safety of the hospital that had become such a huge part of my life for the last few months. There they were used to the procedure of tending to wounds like this… The home nurses from the council on the other hand, had never done anything like it… It turned into quite the battle to make sure things sat on properly, and the wounds became bigger and it was painful. I was dreading every time they came to visit. I developed a good relationship with some of the nurses and managed to get them every day so I didn’t have to get a new nurse every day. But that wasn’t enough… We needed a stoma nurse. That wasn’t normal, they told me at the local doctor. I couldn’t be bothered anymore then, and called her directly. Can you come help me? She came on the day. Two of the nurses chose to stay there and got training from the specialist and set up a proper schedule for me. The stoma nurse eventually managed to find the correct equipment, but I had to pay for that out of my own pocket when outside of the hospital… I hadn’t had this wound for long enough to get it covered by “the healthcare system”. The rules say you have to have a wound for over 3 months for this to get into the correct category to get covered! It is really tiring and disheartening that you have to fight so hard and having to spend the time meant to be spent getting well to instead trying to figure out what you’re entitled to and not!!!

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I almost managed to finish my time waiting at home, but sadly it didn’t work out. The painkilling tablets they gave me came out whole through the stoma. I didn’t see that at first but was just lying in bed twisting in pain, hallucinating and being certain Daniel would leave me. I was having horrible nightmares that my kids were killed and I died. In the end I didn’t know up from down. I had gone from many doses of morphine straight into my blood to oxycontin and oxynorm in tablet form. High dosages and amounts, but to no avail. My colon was too sick and too short for this to have any effect whatsoever. In the end Daniel chose to take me back to St Olav because it was really hard on him. I wasn’t myself and it couldn’t go on like that. I was no help and just a burden for the ones at home. I got back to the hospital and back on morphine which helped a bit. But my mind was at home with my kids and everything Daniel had to do ALONE!

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 I was in enormous pains and had bad infections and no-one wanted to operate on me yet. They wanted to wait and see how much the medications could calm the infection. I waited all the way through summer and the kids were starting school. My twins! Of course my date for surgery was the day before they started school.

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I wasn’t there for the girls’ first day at school – it was hard to be a mum that day and the days before!

I was so down that they had to give me sedatives so I could stand it. Mum, Daniel and my aunt shared the kids between them that day, so it all went well. The kids weren’t alone at least. That Daniel has managed all this is amazing. I’m so lucky to have the world’s best husband, boyfriend and best friend in Daniel <3

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I wasn’t just fighting against pains and illness. I was watching my kids slowly but surely slipping away from me… This became a dark and tough period for all of us. Not at least for the kids that got conflicting messages all the time, that mum is doing well now, she’ll be home soon! Then I don’t come home – new infection or bad test results or new operations. Bleeding or other things setting me back again. It isn’t everything you can tell your kids either, some things just have to be “sugar coated”. That back-fired completely… They didn’t trust me anymore! That really hurt a mother’s heart. You sit there and watch your kids become so disappointed in you day after day, week after week. It wasn’t my fault, but they punished me. I wasn’t there for their first day of school, I wasn’t there when they won their first sports award… Where were you mum?

Could you feel any smaller and more like a failure as a mum?

I swore to myself that I would manage to participate in some small things. I had to get leave from the hospital so I could be a part of their lives! At first I got a straight NO. CVC outside the hospital… no no, they’d rather not. No fucking way, I’m going to see my kids. I’m sure I can manage for 3 hours at Elias’ soccer cup if they gave me morphine when I left and again when I got back! I WILL manage!!!! I was really excited to tell Elias when he next came to visit that this weekend I’m coming to watch you play in the cup 🙂 Elias and the rest of the gang came for their daily visit so I forgot to tell him straight away. But when I saw how sad they were when they were leaving I told him… Elias, mum is coming to the cup this weekend 🙂 Elias is standing in the doorway with tears in his eyes… He answers that you always say that, but you’ll probably get sick again. Then he walks out the door! I understand the boy is sick of hospitals and things not happening as planned. I fight the tears and put on the “smile” and hug the others and say goodbye! The moment the door closes I break down crying. Or sobbing… It is so obvious how this is affecting the whole family and that they’re not doing well! They are silently suffering too! I AM going to the cup if it’s the last thing I ever do!!!

The weekend arrives and Elias doesn’t believe his own eyes when he sees his mum arriving at the cup. They drive me all the way to the field. I get a “camp bed” and I’m lying there ready to watch the cup. They are playing 3 games, and I can feel I’m in pain before the games even start. But Elias is smiling from ear to ear and I’m thinking, you can manage – think positive! I smile to everyone around me and “pretend it doesn’t hurt that much”. Elias comes over and tells me, mum, I’m going to score a goal for you and do a somersault like “Mini”. My first thought was hoping he wouldn’t score, because I was worried he would hurt himself! The cup has started, Elias is playing well and Blink is easily winning the first two games. Elias hasn’t scored a goal yet. By the time the last game comes around it has become almost unbearable for me to be there. The pains take over and I’m considering going back to the hospital. But no, I clench my teeth. It’s a while into the game but no goals yet. Then Elias makes an incredible run, he dribbles his way forwards and scores a beautiful goal, the “Messi-goal” of all times in my eyes! Elias turns around after having done a “Messi” thing with his hands. Runs straight towards me and the rest of the parents on the sideline. He looks at me, picks up speed and does a somersault. He lands steadily on his feet. All the parents are holding their breath while the boy is in the air! Then Elias says – “I did it just for you mum” <3 Elias <3

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“I did it just for you mum” Elias

They drove me straight back to the hospital with insane amounts of pain and the wound really in dire need of tending, but it was worth all the pain and I would never have forgiven myself had I not been at that cup. Just because the doctor’s didn’t want me to! I arrived at the hospital and since I refuse to use elevators I had to walk up the stairs to the fourth floor. My little sister Sara was with me in the stairs, mum was taking the lift up to let them know I needed painkillers as soon as I got to my room. We manage to get past the second floor, nearly to the third when all I could say to Sara was; get help, I’m passing out… I was laying there in the stairs when mum and the nurses came down to get me. Sara hadn’t left my side, mum understood what had happened when we never came up. Because she had to park the car and pay before she took the lift, she knew we’d get up at about the same time. I had used all my strength, and it cost me a bit after. The nurse took good care of me and got me fixed up and on painkillers right away!

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I was fresh out of surgery and everything seemed to be going to plan. They had removed the sick part of the colon and fixed the fistula problem. I was just lying in my room for a long time afterwards… I didn’t quite recover like I had after my other operations. I was halting and in a lot of pain! I had several friends visiting me that didn’t recognise me. I wasn’t my usual self. Anita, a friend that is a nurse herself, was reacting to me being so “sick” almost 2 weeks after surgery. But it went the way it goes and they sent me home with an insane amount of medications etc. I went home with an infection that sounded like a toilet bacteria. One that is really rare but of course I managed to get it.

I was home for two days, then straight back to the hospital….. I had managed to go for a small walk with my kids. I used a long time to cover a very small distance, but I was out with the kids!!! That was the most important.

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That night I was in massive pain and a large dark blood clot came out of the stoma. The new stoma. I got terrified and had to go straight back to St Olav again…

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There was a lot of back and forth from there. I was in a lot of pain. I also got the feeling there were talks in the hallways about how much of this was related to my illness… I knew very well that this was illness related, but I wasn’t believed. I had several instances where I experienced arrogance and disrespectful comments, and after a while they decided to slow down the intravenous morphine and get me back onto painkillers in tablet form! I was strongly against this as I knew they didn’t work. But I just had to do what the doctors/nurses told me. It was coming towards the weekend and I felt like something serious was going on, but as mentioned I wasn’t believed! I screamed for help and tried to explain that only intravenous painkillers straight to my blood would help with the pain… “No you have to get off that type of medications; you have to remember many become drug addicts after such a long time in hospital”. I got furious… “Do you actually think I want to be away from my kids to get morphine?” It’s nothing nice about it, it makes you sick and unwell… but the pains go away and they are unbearable now! I asked to see a doctor… they wouldn’t let me. It was the weekend and I got given a clear message that this wasn’t related to my illness, this was just my brain wanting morphine. “It will pass….” I was laying there the whole weekend with this nurse at work that didn’t want to help me. She nearly managed to convince me that this was all in my head. I was wondering if this is what it was like to turn insane. Am I about to go completely mad? I was in incredible amounts of pain and something was wrong with my stomach! I wrote a diary throughout this whole period, and reading back I can see I was sure this was the end. I called Daniel and told him he had to come see me as I thought I was about to die. It was so painful I had to get help. “You have to come talk to the nurse…” I could hear her in the hallway when I called… “Is she asking for morphine again?” Daniel was fighting a losing battle for me to get help. Daniel was yelling at her and demanding a doctor to see me and painkillers as agreed with the team responsible for pain relief that St. Olav. They were the ones responsible for the painkillers. He had his own bed in my room and stayed overnight till Sunday. Sunday arrived and the nurse we had been struggling with wasn’t there. A “lifesaver” arrived at work. She called the doctor, and they revealed I had an abscess in my abdominal wall and a fistula out to the operation wound. I was so relieved and so angry at the same time that I refused to be taken down to surgery in the lift. “I’m walking!” No-one got to even touch me because I was so angry no-one had believed me before now! I was walked down by nurses and Daniel because I had so many cables and various stuff attached to me. When I had a few steps left the whole wound tore open and the abscess emptied… Believe you me it was painful. A massive abscess putting pressure on and it went so far it tore a hole in my skin. At this point it had gone way too far in my eyes. I don’t remember much of the situation after this happened, but I was completely certain this was my last day on this earth. How could no-one have seen this earlier… I should’ve been taken seriously and to surgery on Friday. This could’ve gone really bad. That they accused me of being a “drug addict” and not being in real pain is so painful to think about I struggle with it even today!

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The hospital journal says the following about what happened…

“The patient has known Morbus Crohn, and was sent to incision of a bulging abscess approximated to the umbilicus. On the way to surgery the abscess burst. It emptied of quite a bit of pus. Since the patient was crying and in pain it was decided to sedate her. Surgery was then performed.”

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So it’s normal that patients walk down the stairs themselves to surgery and wounds bursting in the stairs at St Olav since they wrote it the way they did in the journal… What about everything that happened beforehand? Why was I crying in pain? Why didn’t I get help so this could’ve been avoided? I’m still very traumatised about this situation.

Is there any wonder people die in Norwegian hospitals from getting the wrong treatment?

Undermanned and a large turnaround of nurses.

Weekend staff from staffing agencies that can only open the door to confirm they heard the alarm, but that aren’t educated so the patient has to wait for an actual nurse. 

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If it wasn’t for the nurses that actually worked hard for me I wouldn’t be on my feet today!

All it takes is one bad doctor or nurse for things to go horribly wrong in a hospital… They ruin so much for all the other skilled and caring professionals, and most importantly for the patients.

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All of autumn was spent treating infections riddling my body. I was given a lot of medications to try and get on top of my problems. But it was only medications through the CVC that worked. I was stabbed to pieces by all the needles and there was no way to even take a blood test or anything anymore on my weak body. I had a CVC inserted twice, and late in autumn I got a Hickman line inserted between my collarbone and my breast on the left side. This was necessary because I had to get medications and food into my body somehow. Before Christmas I lost about 10 kilos, so I was probably around 45 kilos as that point. Not a pretty sight!

Read part 9 for the rest of my stay at St. Olav…

See part 1, 2, 3, 4, 5, 6 and 7 earlier in my blog <3

http://www.youtube.com/watch?v=bwOHWMm8tug