Ter uma doença crônica não é fácil

Ter uma doença crônica, ser ostomizado, tomar medicações regularmente, pensar no que pode e não pode comer o tempo todo, estar sempre em alerta com a ostomia... entendo muito essa moça... não sou ostomizada, mas já não tenho meu intestino por inteiro, tomo medicações regularmente, sempre que fujo da dieta me arrependendo, não gosto das restrições alimentares. Sim! eu fujo da dieta, pareço certinha mas não sou, sou igual a todo mundo que queria muito um dia não ter nada, ser saudável, ser inteira. E ainda não consigo ficar relaxada mesmo estando em remissão, qualquer alteração no meu trânsito intestinal e pronto! Começo a sofrer achando que o Crohn voltou, parece até uma assombração! Lembro muito de quando eu fazia exames de rotina e me orgulhava de dizer que nunca havia feito uma cirurgia... parece bobagem, mas só quem passa pelos problemas que as doenças inflamatórias intestinais (doença de Crohn e retocolite ulcerativa) causam sabe do que estou falando.

Por isso que gosto muito de escrever sobre as novas descobertas de tratamentos, novas medicações, ainda acredito na cura. Quem sabe?

O texto que estou compartilhando aqui está em Inglês, mas é pequeno e usando um tradutor você conseguirá entender numa boa. Aqui no blog olhando para a direita você verá um tradutor para usar. 

"The hardest part of chronic illness

No matter what kind of disease or illness you are talking about, chronic disease is hard. And the hardest part is, well… the chronic part. The permanent part. The forever part.

I can’t tell you how many times I have wished just for one day to not have to deal with everything that comes along with it. Just one day completely disease/illness/condition free. Just one day where I could completely erase the words “Crohn’s” and “ostomy” from my mind.

stephanie hughes stoma ostomy ileostomy stolen colon crohn's disease ulcerative colitis inflammatory bowel disease ibd blogFor the first 13 years of living with Crohn’s before my surgery, I rarely got a break. I had a few years during high school where I would feel pretty normal most of the time, but would still deal with a difficult week every month or so. But since I went off to college in 2004, I don’t think I’ve had a day where it hasn’t been present in some form or another, or where I didn’t think about having to quickly find a bathroom or worry about smelling up the one in our dorm or think about the handful of medication I had to take. It was always there. Reminding me that my colon was not my friend.

Even now, I’m so thankful that I have spent the majority of the past two years free of symptoms from Crohn’s, but I will never again be a healthy human being with all of my bodily organs. I will always have to deal with the ramifications that come from not having a colon.

Fonte: http://migre.me/uaZ5x

I wish just for one day that I didn’t have to push my poop out of bag. I wish for one day I didn’t have to try to down 3+ liters of water and even then still feel dehydrated. I wish I didn’t have to think through every item I eat to consider whether or not it may give me an issue. I wish for one day I wouldn’t have to have a piece of adhesive stuck to my stomach, causing irritation and itching my skin. Hell, forget one day, just one hour would be nice! But I know that will never happen.

I’m stuck with it. For now and forever. Til death do us part. There will never be a Stephanie without an ostomy. And there will never be a Stephanie without Crohn’s disease. And I hate to say that, but I don’t see a cure coming in my lifetime. I know that sounds negative and I really I hope I am wrong. I think there are a lot of good things coming to be excited about. Things to push us into remission and deal with the symptoms, but those aren’t cures. Those won’t do away with the permanent nature of Crohn’s disease and ulcerative colitis.

I was given the option of trading one chronic condition for another and I took it. I knew the decision I made was for keeps and that once I went through with it I would never be ale to go back. I don’t regret it for a minute, but there are those days… those days that I just wish I could take even a short break from the permanent."

Para conhecer o blog The Stolen Colon clique nesse link: 

http://stolencolon.com/

Sobre a autora:

Stephanie Hughes foi diagnosticada com a doença de Crohn, em 1999, quando tinha 13 anos. Depois de anos lidando com os sintomas dolorosos da doença, em 7 de maio de 2012, ela passou por uma cirurgia onde seu cólon foi removido havendo a nessecidade de uma ostomia permanente.

Para ler o texto direto no blog The Stolen Colon: http://migre.me/uaZ5x

Quer saber o que eu já publiquei sobre ostomia? Clique aqui nesse link: http://goo.gl/fr0ipP