My weakness… my disease….

ulerativeThis is the shitty’est disease to have and so embarrassing to talk about. So today I will blog about it, and I hope to find people that I can get advice from or that I can support. Its is not a disease you want to suffer in silence with. So here is my story:

A few months after I had my child, I would get these horrible stomach cramps. I thought nothing of it first, but later ended up in hospital due to anemia. So many tests, so many doctors, but eventually it was determined that I suffered from Ulcerative colitis. Such a big word….

Well good news is, is not contagious. Only heritable.  The thing that i believe erupted this volcano was – stress. Definitely the cigarettes too, i liked to smoke during social gatherings. I’ve learned that nicotine is fuel to this disease. I almost had to die to stop this bad habit. I call them death sticks now. In all honesty ‘death sticks’ does not even scare me, but it keep them away from me, for now.

There is medication for this disease, but to receive remission takes time. I was on Mesalazine for 3 years, but every 6 months a had to be admitted in hospital for a inflamed colon. I got headaches often and bled constantly .  I’m not a patient person. After a weekend with friends and lots of hubbly I ended up in ICU. I was healthy at the time, I thought, why not do the ‘normal’ things.

The pain was unbearable. It was worse than giving birth. Even water made me cringe. I wanted to die. The doctor gave me two options. Either remove my colon. Or heal it. I wanted the pain gone. So I thought about surgery. After a lot of prays, I felt like it was the negativity keeping me in bad shape. Also being around all these sick people in hospital didn’t do me any good. After lots of research I decided surgery will actually just make my life more miserable.

After 2 very looong weeks, things started to look better, and I could keep my colon. For this two weeks I could barely eat-  only jelly and soup was recommend. I hated each new day. Being patient was not easy for me.

I love food. Really. Everyone I knew, knew I was a food person. There were I lay, the torture of not being able to eat things i love made everything worse. I missed being normal. Pain free. I forgot how it felt to be alive. Its weird when ‘normal’ is taken away, you realize you need to appreciate what you have more. I felt like I was punished for something I apparently did wrong. I started for apologize for every possible thing I could have done wrong. When the pain didn’t go away, I started to pray, just to be taken away. Let me die! The answer was no. NO? why? I cant deal with this! My doctor, family and boyfriend really kept me living through this time. Without their support I would have been here today.

Now eight months later and I am still healthy. I completely gave up smoking. I changed jobs which helped with the stress issue. Live happens , but I decided my health is not going to pay for situations I can not change. I started to gym, which helped with my weight. All those cortisone shots made me feel a bit chubby. My love for food I could not give up. I decided that I don’t want to die eating gluten free food. I love pizza’s. pastries and burgers to much and the alternative was not the same.  Up till now my body accepted that.

Have I changed the way I live my life? No. I try every day though. I want to be a better person. I never want to be that broken again. Sometimes I will do something and then expect a pain to come as punishment, but it does not work like that. Luckily!!

I would like people to share their experience with me, suffering from Ulcerative colitis or Chrons. I want to get help from people who is living with this and making it work and also want to support people going through this.

Here is some medical facts about this disease (thanks Wikipedia) :

Ulcerative colitis is a long-term condition, where the colon and rectum become inflamed. The colon is the large intestine (bowel), and the rectum is the end of the bowel where stools are stored. Small ulcers can develop on the colon’s lining, and can bleed. It is a condition that causes inflammation of the intestines, such as ulcerative colitis or Crohn’s disease is known as IBD (inflammatory bowel disease). IBD is different from IBS (irritable bowel syndrome). Unlike IBD, IBS does not cause inflammation, ulcers or other damage to the bowel. IBS is a much less serious problem, called a functional disorder – the digestive system looks normal but does not work properly.

Ulcerative colitis is considered to be an autoimmune disease. Normally the body’s immune system works to defend the body against infection and invading microbes. In autoimmune disorders, this goes awry and the immune system attacks body’s own cells.
Ulcerative colitis causes the colon to become inflamed and in severe cases ulcers may form on the lining of the colon. Ulcers are painful sores

Ulcerative colitis usually emerges when the patient is aged between 15 and 30 years. It is more common among people of European ancestry, especially those descended from Jews who lived in Eastern Europe and Russia (Ashkenazi Jews)

 

Causes:

  • Genetics– about one-fifth of all patients with ulcerative colitis have a close relative who has/had the same disease – this indicates that the disease can be inherited. As ulcerative colitis is more prevalent in certain ethnic groups it is likely to have a genetic cause. Recent research has identified a faulty gene that appears to be linked to ulcerative colitis.

 

  • Environmental– some experts believe that diet, air pollution, cigarette smoke and hygiene may be contributory factors. Ulcerative colitis is more common in urban areas of Western Europe and North America.

 

  • Immune system– some scientists say that the body responds to a viral or bacterial infection by causing the inflammation linked to ulcerative colitis. However, for some unknown reason, when the infection has gone the immune system continues responding, which carries on causing inflammation

Azathioprine is a commonly used immunosuppressant for patients with ulcerative colitis, ive been on this medicine since January 2016 and things are going much better.

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2 comments on “My weakness… my disease….

  1. So true! From one fellow UC sufferer to another. I’ve also blogged about my journey. Yours sounds similar, but try not to blame yourself. Like you say, it’s hard to enjoy food and life when you don’t feel normal anymore but you have to try. 🙂

    Liked by 1 person

  2. That was very informative. I do understand how little people know about autoimmune illnesses.

    Like

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