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.

What is a perianal abscess?

First of I will start by telling you what an abscess is: an abscess is a collection of pus. It has some resemblance with for instance a pimple. Except an abscess can grow really big and it's more like a capsule filled with pus due to an infection process. It can be caused by an infection, bacteria or even a splinter.

And what is pus? I know this can gross some of you out, but I really had no idea what I had to picture myself when they were talking about pus. In my mind it had some resemblance with the white stuff from pimples. Don't worry I'm not gonna show you any pictures (you just youtube 'abscess drainage' and you know why not;)). I think I can describe pus best as a light pinkish milky fluid with a particular smell that I recognize immediately.

Back to the abscesses.. As I said earlier I have had several perianal abscesses.

A perianal abscess can be formed when for instance a hair has grown into your butt and started to infect. It can also be caused by an anal infection, fissure or STD. I've had three male hospitalroomies with an abscess due to ingrowing hair. That's the most common abscess. That's also why more men than woman have abscesses. My abscesses are caused by the fistula as a symptom of Crohn's.

When you have a perinanal abscess you start to feel a horrific pain in your ano, in your butt, near your butt, etc. Especially when you sit down or walk. I once asked my surgeon why it hurts so badly, I mean, it's in my butt and that's mostly contains fat. How can something in fat hurt? She told me, that it hurts simply because the abscess creates a whole in a space where there's no space to make a whole. It keeps growing and growing, trying to make a way out. And that way out is usually the skin on your butt. That's when you start feeling a bumb. Besides the pain you can start feeling sick, get a fever, chills and the bumb can turn red.

Sometimes an abscess can burst by itself. But most of the time you really have to go see a doctor who then will drain the abscess. With a 'simple' abscess it can be done without any anesthetics. I've read blogs with people telling they just drain an abscess themselves. (Un)fortunately my abscesses can only be drained in the hospital by a good surgeon.

As soon as the abscess is drained you will feel the worst pain is gone. What's usually left is the pain of the surgery itself. You will come out of the surgery with an open wound. When the abscess wasn't to deep you can leave the hospital the next day. They will probably let you choose between taking care of the open wound yourself by showering the wound twice a day or get homecare. Homecare means that you get a nurse twice a day who will clean out the open wound with (salty)water. The nurses will use a drain or catheter to get into the wound so it can be flushed properly. I've had some bad experiences with the catheters and flushing because it just kept hurting so much. Eventually they gave me a morfine injection half hour before they were gonna clean the wound(s). When the wound is cleaned you get a bandage that will protect the wound from outside infections.

Sometimes they also use gauze that they will stuff into the open wound, just to keep it from closing. When a wound is still not infection free when it closes you will soon be having another infection. The problem with gauze is, that it has happened numerous times that someone forgot to take it out while taking care of the wound. In that case the pain will increase and the wound will get infected again. I've had that ones, omg that started to hurt after a few days, after that my surgeon decided not to use homecare anymore but wanted me to shower the wound myself.

I've also had surgeries were they drained the abscess and left the wound open with a drain in it. I guess it's different each time depending on the place, severity and size of the abscess.

In my experience the open wounds will heal in about a month, depending on the size. With a drain and all inside it takes longer. I still wasn't able to sit for a long time, but that's because my fistula keeps producing pus and the wounds can't heal properly.

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 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.