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So i've been ill for almost half a year now. Been seeing different doctors and they first found out that i had a fistula somewhere between my ballsack and my anus. A nice little 3rd hole that seemed to like it where it was. I was scheduled for surgery in a different hospital a couple of months ago but when they were going to remove it it had magically disappeared. I still had pain and a couple of weeks after the surgery it started to hurt even more. Now when i was taking a dump. My anus was killing my. Bleeding and making it hard to relax on the toilet because it didn't want to stretch and let the poop come out. I had a MRI-scan and it showed that that little fistula was connected to a abscess (big zit kinda thing) that sat right above my rectum. The hospital that i was attending didn't have the skills to treat those kind of things so the sent my files to another hospital. Then started the waiting ... But first there was thing thing called christmas. I was laying in my bed most of the time. Christmas eve is a really big day in Sweden when everyone goes to see their relatives and then we have "julbord" wich is a big buffet wich have it's roots from old swedish traditions. I've always loved the "julbord" and is one of those things i look forward to ever year. This year i could barely eat anything, i had some had ham, salmon and a few meatballs. I tried sitting as straight as i could but got so exhausted i had to take a break after 1 hour and go lay in a bed for 2 hours. After that was done i took a cab home and my stomach had pretty much given in. Was laying on my bed for about 2 weeks missing out on Christmas day, new years eve and a lot of other event i always attend. During this time i had contacted the hospital that i had been going to and asked what was going on. They said they sent the papers and that the other hospital should have gotten them by that time. So i called the other hospital and they said they haven't gotten any documents. Then i called back the the other hospital and they said they will send them again, i was angry at this point. I got some tips to relax and take 1g paracetamol and 400mg ibuprofen every 6 hours. Great there goes my liver i thought to my self. Tried that for a couple of days. Then one day i got a 39 degree fever so i dragged my infected ass to a emergency center and demanded help. Sat in the emergency center for about 5 minutes. Everyone was looking at me like i was some sort of zombie, that was what i felt like at least.
Then came a nurse(hot) and talked to me, got to describe my symptoms for a doctor and she called a ambulance that sent me to a much bigger hospital. I've been there ever since (now about 6 days) and yesterday i had surgery. They put some thread through that fistula to drain the abscess, i can see it and it looks weird. Then they told me i have something called Chrons disease. I've read some about it on the internet but all the information have been really shallow. Not really explaining the disease and what the fuck it's doing to my asshole! Anyone here that have the disease that can give me any tips what to do? All i pretty much know is that i cannot smoke ...
 
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Er as far as I know Crohn's isn't curable.I don't know where you have been reading about it that you only got shallow information but there is a pretty detailed wiki page explaining it,better yet ask your doctors if you are in the hospital lol.
They will probably tell you soon what lifestyle and diet adjustments you should make in order to reduce the symptoms.
Sucks dude,get better soon.
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Well, you'll be on some type of medication to control it, most likely, and all your life. The doctors could tell you way more than I could. I would say to have your blood tested as frequently as you can to make sure you have good levels of iron, and other things. Don't drink, don't smoke, don't eat greasy foods, or foods that are too spicey. I don't follow that exactly, but I know I should, I just don't eat quite healthy enough. Don't eat things that are hard to digest, either. I'm not actually sure how much of this matters,and if it's all true, honestly.
I have the disease myself, I've known I had it for the last 15 or so years of my life. I've only needed one surgery for it. For each person, the disease can be different. If you do normal things to stay healthy, exercise, good diet, and very importantly, be happy. Depression, or general unhappiness, or stress can be harmful to you, as much as smoking or drinking can. Send me a PM if you have any more questions or wanna talk about it, though I recommend a doctor, or someone more knowledgeable for any important questions.
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I know this may sound very simple but just try and base your diet around whole and plant foods, (as well as listen to every single little thing your doctor says..)
It's amazing how much good a healthy diet does for your immune system and body.
Good luck though man
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Make sure to listen to your doctors advice rather than to advice you get from people on a forum who haven't seen you physically (nor have seen your files) and aren't experts. Even if they are experts, any medical advice after reading an ambiguous paragraph is bad advice compared to what your doctor tells you! Have faith in the people who are treating you!
All the best!
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this is hard news.
chron disease is basically chronical inflamations in random portions of your digestive system, those inflamations can happen all the way from your mouth to you anus. The gravity of the disease and responsiveness to treatements is different from patient to patient, but seeing you got fistula (one of the most severe complication) you should go see a gastroenterologist specialised in the disease asap.
Not everything is known about the disease, there are some treatements available, lots of diferent medications and research is still being done. However responsiveness is diferent depending on the patient. What is widely accepted tho is that it has an environmental factor (air polution, alimentation), a stress factor and an autoimnune reaction factor to it.
Again, this is mainly case to case, but the disease work in 2 fases that alternate, an active fase and a pasive fase. In the pasive fase, you can lead a somewhat normal life, you cant smoke, avoid certain type of foods and alchool but it's relatively normal. The active is when random portions of the digestive system inflamate, and this is when you feel like shit. I won't go in the detail of what happen, just know that it sucks.
Usually the accepted medical treatements consist of medication that you will take regularly for the rest of your life, these aim to keep you in the pasive state of the illness. What is working for me right now are immunosuppressive drugs, i can live a somewhat normal life with a fragilized immuno system, just know that there are other options. When i was diagnostiqued that I started on other medication, didn't work, then went to another. I would give names but remembering + translating is too much of a pain.
When you hit an active fase of the disease, there are medication to control it and revert it to pasive. Just know that these are extremely powerfull and will tax your body if you take alot of those. But they are necessary too.
Also there are alot of side disease that can come with this, some of them really not good, altoughth the % of getting those is kinda low, it's good to check.. which is something a specialist will be testing for anyway.
I guess i should talk about surgery. There is no surgery "cure" to this disease, this is because the inflamation is not centralised in a single point, various parts of the system can be, and will be inflamated at the same time, cutting those is done when they are so fucked up there's no helping it, but inflamation can come back in other parts.
So what you should definetly do is find a specialist as soon as you can, ask the hospital if they know any. Talk to this guy, tell him about everything that feel wrong in your body, as i said there can be complications in other parts. What you are looking towards is being carefull with your alimentation, and testing a bit for a treatement that works, if you find one then it's just a matter of taking the medication everyday and your life should be normal. avoid smoking and alchool as much as you can tho.
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All posts in this thread has actually been excellent responses:
Crohn's disease is inflammatory bowel disease that may affect any part of the gastrointestinal tract from mouth to anus, in other words any part of your digestive system. The reason behind it is that your bodys immune system overacts when it senes dangers and attacks everything, including your gastrointestinal tract, and like someone metioned, since you already got fistula it's one of the more severe symptons of this.
Exactly what other symptons you might experiece is hard to determine since its incredible individual for each person, only way for you to find is to actuall face them, no doctor will be able to predict them by 100%. Same goes for the correct treatment, in some cases eating right and healthy might be enough to keep it in check without any other form of medication, or maybe you might need some kind of medication, again it's impossible to tell, even for a doctor you just have enroll into a program and see what treatments that gives you the best remedy.
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United States7488 Posts
Please see a doctor rather than take advice from the internet on any medical matters.
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this guy's writing style.. so blunt, I love it
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Thanks for all the advice <3. I know that you shouldn't really ask for medical advice through forums and other information centers where anybody can say whatever they want. The main reason why i wrote here was because i was scared. It's actually pretty scary to be told that you suffer from a desease wich have such a destinct tone to it as Crohns.
I wanted a place to seek comfort and see how people with the same interests as me coped with the desease. It actually helped me calm down.
I've been reading up on the desease and think i'm starting to accept what i'm facing. It's not the worst desease to have and i dont think i'm on the bad end of the scale when it comes to the symptoms. When i laid in the hospital i was in a special clinic where pretty much everyone suffered from either ulcerus colitis or Crohns. Most of them had stomas wich i thought would be what i was going to get in a couple of days. Turns out my condition wasn't that bad.
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So, it turns out that i have a quite aggressive form of crohns and have to start with a pretty strong medication. Sigh. Anyone tried Remicade? My doctor said it is a very expensive treatment. Good for me i'm not living in USA and the my medication is payd for with the tax payers money =)
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Remicade is one of the strongest treatments you can get for this disease. Altought it is very strong, i havent found it too taxing on the body so you should be ok.
The "good part" about this is you only need it to be given to you each months or so (at least it was for me), so the effect on your daily life is 1 trip to the hospital per months, but no daily medication that you may forget!
Cheers, hope you get better!
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EPT
