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Hola everybody

I've been reading across this forum for about 3 weeks and you guys helped me so much in a mental way to rise up my head. Thank you for this virtual support.

I would like to share my case because I haven't found any single patient similar to me. So here it goes:

I'm mexican, 25 years old and white (my parents are from Jalisco and Sinaloa, a lot of blondes can be spotted there). At the end of November 2015 I was riding my bike every day to my school, 11 km, across the most polluted street in Europe: Av. Diagonal in Barcelona. I started to note blood in every evacuation I had. NO DIARRHEA, NO PAIN, just normal stool with blood. I thought it was an internal hemorrhoid due to the use of the bike.
I was like that the whole december, got a bit worse by stress from my school and by planning the trip back to Mexico for holidays... when everything went down.
And when I say down, I mean I was progressively dying. I arrived to Mexico January 17th of this year, ate a good mexican dish and diarrhea striked like never before.

I got a sigmoidoscopy. From the 20th of January to the 29th I was under treatment and took a lot of pills. This Dr. couldn't establish if it was 'CUCI' (Colitis Ulcerativa Crónica Inespecifica (UC in english)) or just a treatable and simple proctitis. Nothing improved. With 7 diarrheic and bloody evacuations a day, I lost 9 kg (20 pounds) in 2 weeks! My mom couldn't stand it anymore and got me in the hospital.

5 days later I was on Ramicade, prescribed by my OBVIOUSLY NEW DOCTOR and specialist. He later introduced me to a Surgeon for precaution, and not even 12 hours later, with 15 kg (33 pounds) lost already and not responding to the anemia, dying albumin, dying protein and white cells levels on the sky, they literally saved my life by removing that nasty colon.

 

My Dr. told me the disease was activated by high levels of stress and high levels of contamination in the environment. I was finally diagnosed with FULMINANT COLITIS , which is extremely rare, and is the chronic state of the disease (UC) that usually kills the patient... 

After a month in a hospital bed, I could be labelled as a survivor boy... for sure. 

 

Through the year I got my terminal Ileostomy, my takedown, and then my closure just last month. This whole year has been adaptation towards adaptation. I'm still under suppositories of PENTASA (1gr) due to a painful Cuffitis that has been slowly fading out. I'm finally trying to be fully independent once again but it's still hard to mentally manage my life on top of the toilet. I'm planning to return to Barcelona to finish my Master in January, and I'm a bit worried to start the whole adventure again, although I won't live, for sure, in the same part of the city anymore. Also my girlfriend is obligating me to take acupuncture lessons (encouraged by my Dr.) to comfort, yoga lessons to comfort, and taking care of my dog to... MENTAL COMFORT. I have to state that I'm a very apprehensive man and it's hard dealing with all this nightmare that suddenly awaked.

but anyway... pasito a pasito.

 

I don't know if there's someone with a similar case... it will be nice to know if there is anybody out there like me. 

Thanks for reading and warm cheers to all pouchers from Mexico. 

Original Post

I also had fulminant colitis, but just out of the blue with no identifiable trigger. I responded well to treatment though, and did not need surgery for over 20 years.

Extreme stress could be a possible trigger, but not a cause of UC. Bacterial infection in the gut can be too, so I guess that can be seen as environmental. 

Hopefully things continue to improve for you.

Jan

Carlos, your story is very similar to mine. Stress, however, does not cause UC, which is generally thought to be a auto immune disease, or else an extreme immune reaction to an environmental trigger such as a virus or bacterial. Stress can, however, make existing UC worse, but it it is erroneous to say it is the cause.

I also became acutely ill very quickly and developed fulminant pancolitis. Prior to that, I had never had any indication of colitis or even IBS. I was a very active person,  healthy, ate well, etc. No indication I might become ill, let alone life threateningly ill. In early May of 2005, I had a mild cold after taking a trip to the west coast. About a week later, I developed diarrhea and very soon thereafter, bloody BMs. From there, I went downhill quickly.  I was having up to 20 bloody BMs daily. I lost 10 pounds in a week. After numerous trips to the ER and to my doctor (I was sent home each time), I was finally admitted to hospital and diagnosed with UC on June 14, 2005.  My colon was removed on an emergency basis on July 6, 2005 after I did not respond to any conventional treatment (Remicade was not tried, however) and a CT showed "air bubbles" in the colon wall which my GI felt put me at a significant risk of perforation.  

Like you, it was a life or death situation. In 3 weeks, I had lost 37 pounds (I had previously weighed 120), I was anemic, hypokalemic (which resulted in an arrhythmia), and severely malnourished. I had post operative complications including paralytic ileus, obstruction, required 2 blood transfusions, and I had to be on TPN for 8 days. I was in the hospital for 5 weeks.

The good news is, like you, I am now doing very well now.  Unfortunately neither of us will likely every know why we became ill nor what triggered it.  I also went through a period of anxiety after my surgery, which I understand was a natural reaction. I did eventually see a therapist for a few sessions who counsels people dealing with chronic illness, and that was helpful. Maybe that is something you can look into. These days, I like to keep myself busy with yoga, running, horseback riding, sports... I think focusing on improving my fitness has done wonders for my mental health too. 

I hope you continue to improve in your wellness. This surgery isn't easy. It's life changing and a long journey.

Last edited by Spooky

Hello! old thread but I'm looking for possible causes for UC, I also had a very fast, very ill UC, went from living my best life to having no colon in less than 2 months, struggling for my life, living in a hospital, watching my body and mind degrade fast, it is, like many people have said, a living nightmare. I was humbled by this disease in ways I didn't think possible. But that's not the point, the point is that every person I have spoken about the disease asks me the same. WHY DID YOU GET SICK? and I am sick of trying to make people understand there isn't a cause, I can see in their eyes they don't believe me, they think is something genetic, or something I ate, or something I did. Or something. And I thought so too for a while, it would keep me up at night, it would make me cry for hours, what had I done to make this to myself? how can my own immune system attack itself? I have to have some sort of guilt in this. Now I think is not like that, is like some types of cancer, that some people get, for no reason. But there still a little voice on the back of my head sometimes that says... "or is there a reason?"

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