Written in
2003-2004
--------------------- about the disease----------------------
Morbus Crohn is an inflammatory bowel disease.
About the disease
What I have experienced with this disease, is intestinal bleeding, diarrhea, fever and stomach pain, which in the last year (sept 2003-2004)went from tolerable to extreme intense.
The disease can develop in the entire gastric system, from the mouth to the anus. At the moment I have it in the last part of the small intestine, and in the transition to the large intestine (the most common way).
Crohn's often leads to narrowing and tight sections in the intestine, but luckily not with me so far (2004).
The degree of inflammation can vary a lot. From barely active, moderate (most common), to severe illness (what I've had the last year).
------------------------my experiences------------
For me it really started with me getting emergency hospitalized last September (2003) because of abdominal pain. During the hospital stay they found out that the sudden pain came from a ruptured ovarian cyst. Because I had experienced intestinal bleeding the last years, they did a colonoscopy and found Crohn's changes in the intestine. This explained the extreme bleeding and mucus from the intestine and the intense abdominal pain I'd been having for over a year... (the doctors just told me I reacted to milk....)
But it was first after I got the diagnose that hell really started...
I was put on 45mg prednisolone a day, and 3grams of pentasa. The prednisolone made me gain almost 10kgs of water weight, and I got almost all the listed side effects, including a couple unknown ones...
I woke up every day for a year with stomach pain and diarrhea, something that really puts a damper on the social part of life.
Every time I tried downgrading the prednisolone I got over 41 degrees fever and was just about bedridden with pain. In addition to the sudden weight gain putting a real damper on my mood. So I went through about 5 different types of medications that could replace the prednisolone, but either they didn't work, or I reacted to them.. so I had to continue prednisolone. Even though I wasn't supposed to because I reacted to it.... but I felt like it was a choice between being alive and giving up for me at that time
After new years (2004) it got worse and worse until recently. The abdominal pains got more and more intense, and I felt them more in the lower right quadrant, just by the appendix, often misleading doctors to think that's the issue.
My specialist put me on Remicade treatments. That's intravenous treatment you get over 4hrs in the hospital, then you have to lay there for about 2hrs for observation in case of allergic reactions.
Remicade works by binding to tumour necrosis factor alpha. TNFα is a chemical messenger (cytokine) and a key part of the autoimmune reaction. It breaks down the immune system to a great degree. (btw. each cure of remicade is at start 2 weeks apart, and each cure costs the hospital around 15000NOK/1663GBP/1929EUROs!!!)
The treatment itself gives an increased risk of infection, and when I got my first dose I already had a severe infection which neither me nor the doctors knew about.... but the Remicade got rid of the generalized abdominal pain at least... but not the intense abdominal pain caused by an abscess into the deep skin.
I was frequently (2-3 times a week) to the doctor for checkups. A CRP test rarely indicated levels below 100mg/L, and was mostly 250-300 and above. Anything above 150 is commonly seen as a severe bacterial infection and require hospitalization and intravenous antibiotics. With Crohn's patients it's no more than 20mg/L with a calm disease. Under 50 is normally virus infections.
It all resulted that from may this year (2004) to october I have been emergency hospitalized 6times. 5 times for pure antibiotics treatments and observation, once on antibiotics and drainage of the abscess. (local anesthesia during the operation.. which didn't work properly!!!!! FUCK that hurt!!!! )
After the drainage I was well for about 3 days before the abdominal pain and the abscess returned...
I was so ill that if my parents were out of town, I had to live with my aunt or others.
So I was constantly on antibiotics between the hospital stays, and after the drainage. But it didn't help.. so when I saw my specialist, he had a surgeon look at me..
The first thing the surgeon said was: "she needs an operation fast!" followed by some serious discussion between the gastroenterologist and the surgeon that I didn't catch much of. The surgeon also said that the abscess originates from a fistula. So I was sent home with notice to wait for the surgery in two weeks.
But about a week or so after seeing the specialist I couldn't stand the pain anymore. Couldn't walk upright, or even get out of bed at all cause of the pain. Had trouble breathing properly too and couldn't eat because the pain got so much worse then and often made me throw it all up.
I woke one night from so intense pain that I eventually didn't feel them anymore...guess I was in shock. It's the only time I have been in so severe pain that I was 100% sure that this is it, I'm dying.
The scary part was that I felt at peace... I felt like now I can finally rest. It's over, I can be free. Even though I called for help all I could,. the words wouldn't come out.. my body was completely paralyzed. I couldn't even whisper or move.
It is without a doubt the moment in my life I've been the most terrified ever.. but also so at peace at the same time..
Eventually I fainted from the pain, and awoke a few hours later in just as intense pain... but this time I managed to crawl in to the bathroom and call my mother for help, after measuring my fever to 42,3degrees celsius... so my mother rushed me to the emergency room where they measured the CRP to way above 400mg/L. Needless to say I got acutely hospitalized with notice of immediate surgery and pain relief. If I hadn't been so in pain the blue lights probably would have been fun :p
Got isolated at the hospital, and laid there drugged down on about 20mgs morphine under constant observation for 1-2 days i think cause they had to call in an abdominal surgeon from Tromsø. So the moment he arrived I got operated on. Don't remember much from the time between the ambulance and after the surgery tbh... I just was..
They removed 10cm of the small intestine, the right side of the large intestine and two fistulas, whereof one of them ended up as an abscess. Was hospitalized for five days after the surgery.
After that It was antibiotics for a while, and had to make sure I didn't lift anything for about a month. Have a 20cm long scar on my stomach as a souvenir. :-P
Not to mention all the stretch marks from the prednisolone.
picture taken in march 2014:
There were many days in this year that I was in so intense pain that I couldn't get out of bed before taking codeine... but seeing as I hate taking meds that can cause addiction I often avoided taking them and suffered through the days.
Luckily I'm much better now :) and can live a near to normal life. Sadly the operation only removed the inflamed area, and not the cause of the inflammation.. So there is no guarantee for a long lasting remission. Thank god there is no rule saying they would be just as bad if it happens. Got to drop the prednisone after the surgery, and lost 12kgs in two weeks...
But I'm alive !! :D
-------------------------------------------------------------------------------------------------------------------
2006
I've been quite a bit in and out of hospitals the last years... because if I eat normal food (f.ex 2 slices of bread) the food gets stuck... and I end up in the hospital under observation diagnosed with subileus (temporary blockage of the intestines)... I often lay there on high doses of morphine (15mgs I think it was) to combat the pain... After x-rays and the on-call surgeon checking me out that is.... which often takes a while in the intense pain... I have to stay hospitalized because the subileus can become a full ileus... which can be life-threatening quickly. After the acute faze is over it still takes 3-4 days before the after effects are gone... by after-effects I mean feeling like someone lit a torch inside your intestines... and used your stomach as a boxing-bag... and the constipation diarrhea..
The pain of an acute subileus attack is something I hope you NEVER have to experience... there are no words for how bad the pain is.
Because I also have hospital anxiety when I get this ill (not afraid of hospitals at all normally) I often suffer through these attacks at home... even though it could become life-threatening.
They have now blocked out narrow areas in my intestines from where they performed the surgery... seeing as the scar-tissue had caused narrowing of it. And I can hopefully start eating more normal without fearing that it will land me in the hospital on morphine and observation. I still get fevers from time to time.. low grade.. like 38.5.. but that's another normal side effect of crohn's disease so.
------------------------------------------------------
2010
One thing living with this disease, and staying in hospitals constantly has taught me is that I am strong... and I will fight... and one day I will help others cope with their worst days... prednisolone has ruined my dream of becoming a surgeon seeing as I have tremors in my hands from 1.5years on that medicine...
but I will keep fighting and I will get some sort of education within medicine.
"Sometimes you shoot for the moon, but land among the stars" :) I will be among the stars. I will never become a doctor, but I can become a paramedic or biologist.... and I will keep studying and learning everything I can about medicine.
For now I have to focus on my growing belly and in a few years I can start studying for real :) I have to probably redo high school seeing as being ill screwed up my grades from 5/6 to 2/3 :/ but in time I'll get there :)
Things may be 10 years late and then put on hold, but my growing child takes nr1 priority. I'll make sure he/she gets as good an upbringing as I can possibly give.
I've been through hell, and have rheumatic pain or something in addition to the crohns, but I'm still here. I'm still fighting. We all don't get an easy life, but I believe it's what we make of what we get.
I've felt like I almost died, beaten eating disorders, anxiety, depression.., been bullied all my life, had an (mentally mostly) abusive bf, and I'm still here going strong. One day my time to shine will come and I will show that even the broken flower can blossom! !
I will fight!
