mercoledì 24 giugno 2015

Colite Ulcerosa ( EN English version )


MY STORY 


July 2013 (during my lunch time - Italy) 
Dear Friends,
About five million people in thirty-six countries are diagnosed with Crohn's disease  and  ulcerative colitis. We need to talk about our disease with the hope that we can help  each other  .
I decided to write my story and publish the pictures, after I saw the model Bethany Townsend suffering from Crohn's disease posing in bikini with her colostomy. In a few days I' m going to make the surgery of Ostomy in the Department of Surgery of S. Orsola Hospital in Bologna, Italy. It is the center of excellence, the third in Europe, for Crohn's disease and Colitis ulcerative, directed by the Professor Gilberto Poggioli . I have to do the total remove of the colon with a temporary ileostomy packaging.I can not wait that time, to get better and give an end to this nightmare .....
Everything is started 26 years ago, after the birth of my daughter; I was 27 years old. I remember I had a lot of pain, blood  and diarrhea but no doctor had understood what I had, they said maybe it was the appendicitis, hemorrhoids, stomach. I had to go immediately to Greece, in order to control myself, I trusted my country. As soon as I arrived  my dad brought me to our family doctor; the results of the analysis of feces were terrible : only blood, on the other hand the result of the blood exams was : iron almost zero , hemoglobin at  level six. The doctor immediately said: ulcerative colitis .. bring her to the hospital .... it was a general doctor but very competent. I have been  hospitalized to the University Hospital of Ioannina , and it was diagnosed the IBD ( ulcerative colitis). The colonoscopy did not exist at that time, I had a so painful proctoscopy, I still remember it. The doctor put me  on treatment with mesalazine, cortisone and transfusions ( I also have the thalassemia minor and this is a complication with this disease), then the doctor told me that it was a chronic disease that I had brought with me, along my life. I was non able to understand what it was exactly, I thought that I had a bad meal in the past, my bowels had got ulcers?I felt so confused and scared, but 26 years ago the doctors had not explained to me, that this is an autoimmune disease. They told me that this illness , it was a matter of a chronic disease  and I had to stay calm, I do not get excited.  I was so young, I had 2 children and I wanted to play with them, to have fun and to be able to eat everything, but I could not. I had to always be careful about everything I did. I was missing the energy and the quality of my life was horrible.
However I was able to understand that the IBD was an autoimmune disease in these last years 
What does it mean??
The inner working of the immune system is based on the ability of its various components to recognize on the one hand what is part of the body (self) and on the other hand of what is foreign (non-self).  To do this, it is necessary that our defense system learns not to attack their own cells but  to recognize them as harmless. But sometimes when  this ability is lost, our defense system becomes crazy and starts to attack his own cells and tissues of itself.
In these cases we speak of inflammatory and autoimmune diseases IBD ( ulcerative colitis and Crohn's disease), rheumatoid arthritis, ankylosing anchilosante, the systemic lupus erythematosus, psoriasis and type 1 diabetes.
I remember that for about 15 years I was always sick and for four times a  year I  had a worsening  during seasonal changes ; at the beginning I prefered to be hospitalized in the hospital in Greece, but lately my father found a professor at the hospital of Ancona in Italy, who he take care of me for a long time. I was tired all the time and completely worn out; I felt weak because of the Mediterranean anemia  and I had low hemoglobin, tachycardia, iron deficiency, lack of vitamin B12 and folate, pains in the joints, periodontitis, osteoporosis; I had to eat more meat, potatoes, rice, crisp brad and some banana and I was on medication with steroids and mesalazine. I was exhausted ! I had a poor quality of life ( depression and no energy ) and I was compelled to be assisted by my husband, during the worsening. I desired to carry out my daily activities and tasks but it was not possible with the pain and depression. I had no friends, no wish to talk with the others and go out to have fun. I prefered to stay alone with my pain. My husband had helped me a lot during these years with our children. 
Then the disease is gone by making a treatment with l'azathioprine. The professor had told me about this medicine but I do not remember if I have well tolerated it. I remember that I took it for about 6 months and later the disease has calmed down. I did a proctoscopy (I had never done a colonoscopy yet ) my intestine was normal without the disease. I DID NOT BELIEVE IT, but I was wrong, the disease always was there and he was sleeping peacefully and the worst is still to come.
The professor told me that I should continue through all my life the mesalazine and every two years to make a colonoscopy. All the years from 2004  to the present, for almost 10 years, I have never been checked and I had stopped any medications.:-
FRIENDS DO NOT MAKE THIS MISTAKE!! LISTEN TO YOUR DOCTOR,
I believed that I recovered of a IBD, but I did not. There are only moments of seeming wellbeing but the disease is always there. The Mesalazine is taken for all the life for support, even if we feel well and we think that it is get over. The mesalazine prevents the cancer and it needs to be making a colonoscopy every year!!
                                               July 2013 ( Germany Metzingen) Hugo Boss Run ) 
I spent 10 years of well-being, I have eating  very healthy and well, much more organic and natural  food, fruits and vegetables; I created also this site with my recipes. I have started the gym 4 times a week and I have had a very active life, travels, fun and never failed to appointments with my friends to get away to the SPA during the weekends. I was so happy and I no longer thought  about this disease, but one day the month of April 2013 I had a very strong worsening and since then, the acute disease has not stopped. I was so afraid that it was something else, because I had never checked through these years but thankfully after many colonoscopies, biopsies and analysis , he was  my old friend, the ulcerative colitis. She began to destroy the first part of the rectum and sigmoid and then the descending and traverse and then walked up through the entire colon. The doctors have said it is not my fault .. it is the disease itself ... I got back to the hospital in Ancona ( Italy ) and the head doctor Lorenzini and his team, took care of me, great center and excellent doctors . A big Thank you to all of them for their support. They have done the impossible to save my intestine, which already has been destroyed. I have been hospitalized 5 times, within 12 months.The hospital had become my second home. The colonoscopies were made with the pediatric tool in Radiology Dept. because of my intestine has also  a stenosis and it was not possible to be controlled by a normal tool. 
Here the result;  the worst form of PANCOLITIS and then all the various analysis and exams Entero TAC, RM etc.... I was scared of the yellow shirts,employees that they bring you to do several tests, when they were coming into the room, then the white shirts with all these infusions bottles of all the colors, then the blood bags, then the doctors dressed in green, but during the morning I was happy with the OS, I called them the red shirts, always so kind to take parameters, help you to take a shower, wash your hair, make up the bed.
                                                     February 2014 ( Ancona hospital) 
This acute worsening has brought me in a deep depression and from then I have been on medical-treatment with psychotropic drugs, mesalazine, steroids and  azathioprine but nothing to do... every time I went back home, I had to return to the hospital with a acute disease stronger than before.
After all the medications  I have tested, I received a treatment with a biological agent anti-TNF ( Remicade). I was so afraid to try it, because I had read on the forums, possible side effects, but at the same time I was happy because it was perhaps the cure for this disease. The head doctor  of the Hospital had told to my husband that the BIological agent ( Humira and Infliximab) works at 70% of cases, but in my case I had a chance that would work only 40%, if I had  have no allergy.
FRIENDS IF  THE anti-TNF WORKS  ON YOU  ... DO NOT EVER STOP!. HAS NO SIDE EFFECTS. The first treatment worked immediately without any reaction, every five weeks I went to the hospital for treatments and I was fine.  I arrived  at 9:00 am,  and then the nurse got the parameters, blood etc. and then while waiting for the preparation of the medication, she made me a intravenous feeding of cortisone and another one of antihistaminic, then the infusion of Remicade going on for 4 hours. The infunsion had to go very slowly, every 30 minutes the nurse came into the room to check how it  proceeded; I always slept and dreamed. By the end  I had another intravenous feeding to clean the vein, and then about the 17.00 the therapy was over . My blood test were very bad even if the diarrhea , mucus and blood  were gone. The calcoprotectina test was at the 500 level and the  hemoglobin weekly test was lower. After the third anti-TNF treatment, I had diarrhoea mixed with blood again, and  was worried about it, because I was aware  that after the anti-TNF therapy the only solution was the surgery. The leader of the division of  Gastroenterology suggest  to anticipate  the  fourth therapy in order to check if my body gives an response to the treatment but nothing to do. Maybe my immune system has made antibodies against the biologic agent, who knows ??? No one knows; the doctors have said that the anti- TNF does not work on about 30% of patients and I was in that 30% . I had the worst relapse of my life ( the symptoms of diarrhoea at 25 times a day along with the blood, mucus, nausea and intense pain). I have hospitalized urgently, I could not walking, talking,eating,sleeping. I immediately had two blood transfusions just to get over and walk ; at this point the only medication was the high-dose of steroid, that caused me the hair loss  at 50% and the muscle loss. I will not go into details because at this point, I can be understood only by people suffering from IBD. I look at the mirror and see myself, I was not me; 
                                                         ( May 2014 -in my home)
I started to cry, I was puffy with few hairs and depressed. My husband was very upset for me, he was day and night very close to me, he suffered along with me, he wanted to take away my pain,my illness.I asked my doctor if it was possible to try  a new therapy  called : granulocyte/monocyte apheresis . I had read on a scientific journal  INFORMA A.M.I.C.I , about  the therapy discovered  in Japan with great success. My doctor told me that I could not do it, I also wrote to a scientific newspaper and a competent doctor told the same thing; to leave aside this therapy and go ahead with the total colectomy. At this moment, I am on medication with very high doses of cortisone, mesalazine and intravenous feeding, in my home, trying to stop the bleeding.Unfortunately I can not take other medicines. The fever does not stop, every night increase up to 38,5. I feel so suffering, the level of PCR increased to 92 and I am in risk of bowel perforation, which would kill me, but missing only a few days to arrive the time of surgery. I was a bit scared and worried for this surgery,I was terrified of having an ostomy pouch, it seemed to me the end of the world, but after speaking with il Prof Poggioli, my surgeon,he has made me feel more relaxed and calm, in order to face this experience with optimism.  He reassured me that everything will be fine and i will feel immediately better.
                                
                                                             ( July 2014 -in my home) 
How it will be the things after surgery ??
I do not know yet, you will be updated after my surgery, when I will get  back home and I will be able to sit in front of  my Mac. How it will be my life with the ostomy packing and for how long ?? I do not Know yet , I hope not more than  five months. 
Do you know what I think ???
I do not want this organ in my body, that gave me all these problems and  then all these treatments  and medications  could destroy other organs and carry many side effects.
Now I feel so Positive and Hopeful.
No  more medicine, my body will start to  detoxify, I will begin to eat everything, get out, go to the restaurant, super market, take a walk, go to the SPA  with my husband , that has always been my passion.  
I am sure , that I'll get it over  and I 'll get back to my old self , smiling as before.

I  will get back in shape, it will take some time ...but it will be.

                                                     ( March 2011 my 50th B-Day)
FRIENDS  NEVER  GIVE UP; STAY STRONG AND POSITIVE 
LIFE   IS SO BEAUTIFUL AND HAS TO BE LIVED AT THE FULLEST . WE KNOW THAT IT IS NOT EASY WITH IBD, BECAUSE  IT IS A DISEASE THAT  THE OTHERS  CAN NOT SEE , AND SOMETIMES  THEY TELL TO YOU: YOU LOOK NICE, YOU LOOK HEALTHY!!! 

                                                                    ( April 2013) 

BE STRONG 
because things will get better
it may be stormy now, but it never 
rains forever
Chara Filippa

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