Hi ya'll. I'm new to this. I was diagnosed with Crohns Disease in January 2014. My doctor said it's one of the worse cases he's ever seen in someone my age.
Hi there. Very sorry to here that you are not doing well, but great that you found this forum and really want to inform yourself about Crohn's disease. From my own experience, information and really knowing what this disease is about is key to managing it effectively.
Oh and by the way, don't take docs seriously who say something like "you are one of the worst cases" etc. I have lived in quite a few countries in the past and had thus had the pleasure to talk to quite a few GIs and the good ones would never say something like this - the bad ones said stuff from "you got mild Crohn's" (ignoring my 2003 surgery...) to "you probably have severe Crohn's". Fact is, everybody has Crohn's and for most people it is manageable if the right long term mix of treatment (drugs, lifestyle, diet, supplements, stress relief etc.) has been found.
I went to the ER more times than I could count and all anyone would tell me is that I had 4 fissures. 2 of which were very deep. They didn't tell me why I had them or how I even got them. Finally on Christmas Eve I blacked out at work and they called the life squad. I had no idea where I was going, nor what hospital I was at. The top level of my blood pressure was 80. That I do remember. I finally found a great doctor, but I'm still not in remission. He keeps wanting me to go on Remicade. I'm on 100 mg of 6MP, Balazide, steriods and something else I can't remember off top of my head.
A few questions to the above. Where are the 4 fissures? How did they find them? Did you do an MRI?
You do not seem to have started on Remicade. What is the reason? Biologics (remicade, humira, cimzia etc.) are after all the most effective treatment and it is debateable which have the potentially bigger side effects, 6mp or biologics (the good thing to note is that for the vast majority of patients, both immunosuppressives like 6mp/aza and biologics work just fine without side effects).
What steriods are you on? Prednisone? For how long? If there is something that is dangerous to take long-term, it is definitely steroids. They help with inflammation, but long-term (many months or even years) they can get people into big trouble.
Well as of last few weeks I've been in a increasing flair up. Just today 2 times the bowl has been filled with lots of blood. I'm not in pain as with the fissures, but am FREAKED OUT by what this is. I'm also having discharge that is slightly yellow and mucusy. I also believe I have 2 fistulas which is where I feel the discharge and blood is coming from and need to get myself to the doctor asap. However, I am a full time college student,working 25-30hrs a week. I just needed to get this off my chest. Anyone have any comments or help they can give me will be appreciated. I can't take this anymore. I just want to crawl up in a ball and not leave my home. It's a sad way of living and I am tired.
Again, so sorry that you are not doing well at all. Many people have been there, I as well, especially during my time at university when I couldn't manage my Crohn's at all.
All I can say is, talk to your doctor about biologics such as remicade (or better, ask about Humira, which is the standard biologic drug now, as you can administer it yourself at home). Are you on a special diet? Have you tried a special liquid medical diet? I can only reiterate it, try to check out the different sections of this forum and just read people's posts and topics for a while to get a better feeling of what people usually do to get Crohn's under control. The fissures you mention are of course worrisome, but biologics can have an effect on them as well initially.
All the best,
A
