My story: downhills

I will pick up were I left off..

The open wound

When visiting hour was over the nurse came to my bed to take a look at the open wound. It was wrapt with a lot of bandages and a drain was sticking out that was tied to a plastic bag and that bag was tied to my hospitalbed. There was a lot of blood and pink smelly fluid when the nurse removed the bandages. That was the first time I smelt pus. And let me tell you, it's not a pleasant smell. The nurse told me it was a very deep large open wound about 3 cm away from my ano. She also told me they were going to clean the wound twice a day. I thought she was talking about the outside of the wound, but when she came back with catheters and all I started to suspect it was going to be inside the wound. She told me to lay on my side and she started to stick a catheter inside the open wound, next to the drain that was already there, and started to spray water through the cathether into the wound. OMG that hurt!!! I just screamed and grabbed the side of my bed and was holding it so tight untill she was finished. I never scream, so it was so weird that sound was coming out of my own mouth. Then she told me she was going to put gauze into the wound. I just grabbed my bed in advance and she started pushing the gauze in. That was even worse! I was bagging her to please stop. But she told me it was absolutely necesarry and I had to try to lay still. Ones the gauze was in I was given very charming panties and a large sanitary towel..hmm.. My hospitalroomies asked if I was oké and they felt sorry for me I had to go through that twice a day.

My most critical moment

I was feeling very sorry for myself too:( Besides the pain of the wound terror I also started to feel the after surgery pain, so the nurse gave me some painkillers, that helped a little bit. I was really tired after all of this and just wanted to sleep. Maybe the pain would be better the next morning. During that night I started to get really cold, so I asked the nurse for an extra blanket. That didn't help so I asked for another one because I was shivering. I tried to sleep again and I woke up feeling so warm and just not well. I pushed the red button again to call a nurse. She took my temperature and it was extremely high. They called the doctor in and he wanted to check my blood. So my blood was checked and they came back about an hour later to tell me it was going dowhill with me. From what I can remember I made some kind of joke and the doctor told me there was nothing to joke about because I was having a sepsis and I could die.. I remember they were drawing blood from me every half hour. I was beeing checked and monitored constantly and given antibiotics and more liquids through my IV. My mom told me that I had called her to say I could die, and that's it, but that's the only thing I can remember. I guess I was to sick to really comprehend what situation I was in.
The following days are very blurry to me. I'am told I was sleeping a lot. The good part is that the antiobiotics did what it was suppose to do, and in the following days my temperature and bloodlevels started to decrease. Yeeeeh!:) A nurse showed me my bloodresults a week later from the night I had the sepsis. I guess she still had the feeling I was so calm about it, I was just babbling with my roomies and didn't get that I could have died that night. My CRP level was 370, normally they are between the 0-10, when you're not feeling to well they are about 20. Also my leukocytes(white blood cells) were sky high. I guess it's when she showed me this I came to realize I had been very lucky.

The aftershock

Till today I still can't really be sad, scared, mad or extremely happy about it. I think it's because I was sort of 'away' when it al happend and I wouldn't be the one to know it if I had died, because I would be the one who was dead.. It did scare the shit out of my family and friends. My mom told me she had made a phonecall to the doctors office who had let me walk around with my symptoms for more than a month. She told them crying and angry that I could die because of their incompetence. If they would have just believed me.. That's so not like my mom, but I'm so proud of her! She and my dad switched to another doctors office soon after.
I was feeling really weak and couldn't walk without help, or I would just fell over or faint. I was overwhelmed with flowers and presents and good luck cards, so sweet. I do take life somewhat more relaxed now. I think that's due to this experience and also because of me being sick for more than a year now. The things that you normally dont't even think about are not so normal to me anymore. I can be very happy when doing my own groceries or just sit on a sofa instead of lying on my side all day.

My story: my first surgery

October 2011

I will start where I left off.. I was going home with a lot of pain medicine to wait 4 days for the appointment with this specialized surgeon. I had mixed feelings about an upcoming surgery. If they would have operated on me days before, I wouldn't have been able to get really nervous about it. Now I knew it was still going to take place, but I didn't know when. So I didn't really get much sleep those days, also because the pain was still killing me. After 4 days me and my mom went to the appoinment at the hospital. The first thing the surgeon asked me is why I was still sitting on one side of my butt? Well, because we were waiting for you to perform surgery on me, as discussed with this ER surgeon.. My mom and I were looking kind of proud when I told her this, I mean, I have waited 4 more days in so much pain, I thought it was quite an accomplishment. But the surgeon started to look really pissed off. She looked me straight in the eye and told me this was a very serious very dangerous situation I was in. That abscess should have been drained immediately. And she told me because of what she had seen on the MRI, it wasn't going to be just one surgery, she would probably have to operate on me numerous times to get this under control. She was very angry with this ER surgeon, he had made a mistake by not operating on me and letting me go home. Whoops.. My mom and I looked at each other and didn't really know what to say. I guess we were both flabbergasted. I thought it was just a matter of draining this stupid bumb and that would have been it.

The surgeon told me she was going to change her agenda that day because I needed to go in surgery as soon as possible. I wasn't allowed to eat or drink anything from that point on and had to check in to the hospital again. About 3 hours later, they told me I was going to the operating room. I had to put on this blue long shirt with buttons that was open in the back. And had to take everything else off. The nurses wheeled me in my bed to a pre-operating room. I had make-up on which they were trying to remove (It's good make-up) and I had to wear some weard thing to cover my hair. They gave me a very nice warm blanket and then I was wheeled to the operating room. Because I was going to have an epidural I was going to be alert during surgery.

The operating room looked a lot smaller than what I've had seen on tv. I have this sick interest in surgeries, so eventhough I was nervous I was also exited to be in such a room myself. You see a lot of equipment monitors and a big lamp. And now I knew why they give you this warm blanket, it's freezing there! I had to switch from my bed to the small operating table. The anesthetist stuck a needle in a vane in my arm for the anesthesia. And then I had to sit up straight for the epidural. This was the part I was most scared of. I had seen epidural needles on tv and the idea of them sticking that enormous thing in my spine was just terrifying. So I just squeezed the hand of a really nice assistent-anesthetist untill they told me it was done. I had to lay down again and they were installing some sort of thing to put my legs up. Like I was going to have a baby.. At that moment I really wished I was there to give birth instead of that stupid abscess. My legs started to feel numb. When they lifted up my legs to place them in these standerds I couldn't feel a thing. That's just so weird. I felt my belly and I couldn't feel my hand till just beneath my breasts. My surgeon and some of her assistents came in. They placed a green sheet as a curtain between my upper and lower half of my body so I couldn't see what they were doing down there. I also had stickers with wires on my chest and a thing on my finger. The assistent-anesthesist was sitting next to me to monitor everything. Because I couldn't see what they were doing and I was really nervous I just started babbling to him. I could hear my surgeon teaching some of her students, I could also hear what she needed next from the tooltable. After about 45 minutes she was done. She told me the surgery went well. My legs were layed down and I was switched from the operating table to the hospitalbed and wheeled to the recovery room.

In the recovery room they hook you up to monitors again and check on you like every 10 minutes. I asked the nurse what all the lines on the monitor were standing for. They check your heartrate, your oxigyn level and your bloodpressure. They take your temperature from time to time and they also check your bladder with an echo to see if it is full. If so, they will stick a catheter in it. Luckily mine was almost empty.. I hoped it stayed that way because I saw my IV therapy dripping really fast. They also had some liquid pain medicine hooked up to my IV. Next to me people were sleeping and snoring really loud, some were in pain, some were confused, some were pucking, some were crying. And I was just watching all of this, meanwhile constantly feeling my legs if I would start to feel them again. I think after an hour I could wiggle my toes again:) The nurses told me that when I could wiggle my toes I would be brought back to the hospital room, so I proudly showed them my wiggling toes. I also wanted to get back to the room because I was starving, I really wanted to eat something, anything. I was wheeled back to my room shortly after that and my parents were allready waiting there. Later on also one of my sister's and some friends came to visit me, sweet:) I was feeling really weak but no pain and I wasn't nauseous. So I babbled along about the surgery and all till visiting hours was over, then the nurse came to my bed to check up on me and told me she was going to take a look at the wound and clean the wound. I thought oké, you do that, I was kind of curious myself about what my surgeon had done and what the damage was. I didn't know my happy-after-surgery mood would go downhills pretty soon after..

My story: abscess

August 2011

It started with pain in my butt. It was difficult to sit and my bowell started to hurt. It was such a discomfort that eventhough I didn't really want to, I had to go see my doctor. He told me he had to feel on the inside of my butt, exactly the reason I didn't wanted to go to the doctor;) But the pain was so bad, that I thought: well just do it then and make me better. He said I had a fissure that was causing the pain. I had to use a ISDN cream that gave me a terrible headache and in about 3 weeks it should be healed.

After 2 weeks the pain was still the same, so again I went to the doctor's office. This time I had a female doctor who thought it might be hemorrhoids and my IBS (Irritable Bowle Syndrome), so I had to take pills and it would all go away. But again, the pain started to increase.

The third time I went to the doctor I was asked if maybe I was depressed.. (?!!) Yes ofcourse, I'm imagining the pain, just crave for attention and I just love people to stick their finger in my butt.. No, I'm in a lot of pain! She said it maybe was time to make an appointment for me at the hospital to have a better look inside my rectum, I was scheduled for 2 months later! How was I suppose to do that? I couldn't sit, couldn't go to work, had so much pain and was feeling sicker and sicker. I started to have a fever and a couple of days later felt a bumb in my butt, near my rectum. So I called the doctors office again, and the doctor said: 'oh am I glad you're feeling a bumb, because that's how I know what it is now, you have an abscess. Just wait a couple of days because it needs to grow ripe and then I can make a little hole in it and drain it'.

Hmm.. Oké an abscess, that sounds gross. Especially the riping part. Like I have a big pimple in my butt that they have to squeeze out.. But it also meant that I finally knew what was causing all this pain!:)

However, in the following days my fever started to rise and my mom was really worried about me. She went to the doctors office and talked to another doctor about me. That doctor wanted to see me at the doctos office the same day. When she saw me, she told me she could tell I was in a lot of pain for a very long time. And while she said that, I broke down and cried. Finally someone who believed me.. She told me I had to go to the emergency room of the hospital immediately.

So I called my mom and dad and we were in the emergency room about two hours later. A very handsome assistent-surgeon first had to feel on the inside of my butt (ofcourse:-/) and than stuck a needle in the bumb. There was no pus coming out.. He walked out of the room and came back with another surgeon. She also stuck a needle in the bumb and pushed really hard. Oh that hurt so much! She did manage to get pus out of the bumb. So yes this was a fully ripe abscess an they told the nursus to prepare a surgery room, because they were going to operate on me to drain the abscess. Huh? I guess I looked kind of shocked when they told me this.. I only had a surgery ones, and it's not like my favorite thing to do..

After that it all happened so fast. I had to go to anesthetics first. There they told me I was going to have an epidural, which I didn't liked. I wanted to be very much asleep during surgery. But that was not up for discussion. First of all, I ate a cracker 3 hours earlier and secondly the pain reduction after the surgery works much longer because half of my body would be numb for a couple of hours.

I had to check in to the hospital, they showed me my bed, got my nametag bracelet, like I was checking into a resort. And I had absolutely nothing with me. I was still wearing my dress and high heels, haha..

Then they wanted to make an echo to see the exact size and location of the abscess. When they made the echo I was also able to look at the monitor. On the screen I saw a lot of white clouds. The man who was making the echo stopped and seemed very worried. I'm not a doctor, but even I could tell this wasn't just a tiny abscess. The abscess had the size of an orange and the whole area around it, till my bowel was infected. The surgeons didn't want to take any risk and therefor also wanted to make a MRI before operating on me. I was scheduled for the MRI the next morning (I will tell you more about MRI's in another post). A surgeon came to my hospitalbed with the result of the MRI and told me it was going to be a difficult surgery because it was near my sphincters. If they were to make any mistake I could become incontinent. What?! He told me he could try to drain the abscess that day or I could wait a couple of days because there was a female surgeon specialized in this kind of surgeries. She was going to be at the hospital 4 days later. Ofcourse I wanted to wait, I've managed the pain for more than a month so 4 more days shouldn't be that hard. It was like making a decision between diapers and pain. I choose pain. He also told me I could choose to stay in the hospital or wait at home and come back 4 days later. Because of my fever and all the bacteria in a hospital I went home. The appointment with this specialized surgeon was scheduled for the next tuesday.

My Story

On this page I will keep you updated on my story. I will tell you my story from the moment I was diagnosed with Crohn's disease in december 2011 and I will start the story by going back in time to tell you how it all began.

I believe staying positive and keep smiling and joking, helps. So I tend to have some sort of black humor that you will also find in my writing. That's just my way of dealing with this terrible illness. And I have to say that sometimes due to my Crohn's, I end up in situations that are so embarrassing, the only way to cope with it, is some humor. Otherwise I would have gone crazy.

xoxo Barbara

My first symptoms

I think I was 15 years old when I started to have bowel problems: pain, diarrhea, feeling sick, feeling tired, my belly would swell up and shock from time to time. I have been to my doctor many times and she had all kinds of explanations: you may have a virus, you may have a lactose intollerance 'I will send you to a dietistion', you may be stressed, it might be your period, etc.

I think I was 18 years old when she finally gave it a name: Irritable Bowel Syndrome (IBS). I wasn't really sure if I was happy with this diagnose, I still think it's a made up name for symptoms they can't name. 'Oh it's something with your bowel? Well than we know what you have, IBS'. An easy way on how to put people at ease because we tend to need names for our symptoms to cope with it.

But even I never thought that I would have something like Crohn's disease, because in my mind those people where really sick and as I mentioned earlier, very skinny and I was a normal size girl, and if I would eat everything that I liked, I could grow pretty fast. I couldn't eat anything I liked, my bowel would protest, but I never compromised on food, I would eat what I liked, even if it would mean my bowel would hurt or I had to find the nearest bathroom really quick. I just thought this was semi-normal and I just had to deal with it.

About 4 years ago my bowel really started to hurt, swell up, I felt sick and it just wouldn't stop. We even thought that I might be pregnant, but the test was negative. So again I went to see my doctor. She wanted me to draw some blood. The result came in a few days later and it showed an infection. So my doctor prescriped me some antibiotics and after almost 3 months I started to feel better.

When I would go on holidays I always made sure I had pill's against diarrhea with me and was hoping I wasn't going to be to sick this time. Not like I can't do anything sick, but just not feeling very well.

It was the same with going away by car. Unconsciously I know every gas station with a toilet along the roads. I thought everybody knows that, but when I ask people, they don't. They even start to laugh when I tell them this. Guess it's not that normal.. haha.

So I have had al sorts of symptoms and discomforts since I was a teenager, but I just didn't really know any better. That was just part of me, and everybody has stomic pains from time to time, right?

When I was diagnosed with Crohn's it all fell in to place. Maybe I wasn't just a lazy teenager, I just needed the extra sleep. And maybe that's why I had the flu more often than other people. And more obviously that's why I had the bowel problems and pain.