chronic illness

My journey with chronic illness and the diagnosis of crohn's disease.

What is chronic illness?

More so what is it like living with a chronic illness?

By google the definition of a chronic illness is

A chronic illness or disease is an illness lasing longer than 3 months. You might have heard of chronic fatigue before? When someone gets knocked down with such an overwhelming tiredness life becomes much harder to engage in and you may need time off to try rest and recover your body.

For me chronic illnesses is a bit different. I have crohn’s disease but unfortunately this is one that will not go away after a few months. You cannot cure crohn’s disease. You can treat the symptoms of it, and you can even live a fulfilling life even with the disease. It flares up and it goes into remission. It’s about learning to manage the symptoms of disease. I first got sick at fifteen, I was under extreme stress and my bowels were suffering. You might have had something like that, the day before your college presentation where your stomach was doing hula hoops and you thought you were going to get sick. Irritable bowel syndrome is somewhat like that. The difference is IBS is seen as a condition that affects many and while it is a medical condition it is not referred to as a disease like inflammatory bowel disease (ulcerative colitis, crohn’s disease).

The first book I bought on crohn’s disease

   

IBD inflammatory bowel disease like I have are long term chronic conditions that cause inflammation in the gut. With crohn’s disease inflammation can occur in any part of the digestive system from your mouth all the way down to the anus. This can cause a range in symptoms from recurring mouth ulcers to perforated bowel needing emergency surgery.

I was diagnosed with crohn’s disease in 2017 after 20+ admissions to A&E in the year prior. I was ill, I was anaemic, I could not eat, crippled with cramps, suffering constant fevers and heightened pulse. It was a cause of being admitting into A&E only to live in a bed for five days on a drip of IV fluids and antibiotics. Diagnosing it was difficult. I had several colonoscopies and was always sick, but nobody could tell me what was wrong with me.

I would be admitted to hospital where they would treat the infection and when my bloods came back normal 4 or 5 days later, I was discharged well but without answers. I was under severe stress trying to tell the doctor’s something was wrong but constantly being unmined with the answer “You had an infection, but your bloods are fine now”. I wanted them to tell me what was causing this infection.

Living with an undiagnosed chronic illness brought me to suicide on many occasions.

I had my plan to jump off a cliff and end my life. I was not in mental distress, but I felt I could not live with the physical pain anymore. I was in bed immobile, unable to eat, barely able to move. I tried to maintain my life outside the illness, but I would end up bent over in pain needing to get to bed. I was missing out on life. I could not drink alcohol, heck I could barely eat. The only reason I didn’t jump off that cliff was because I was physically too ill to make it to the cliff. I could barely get up to use the toilet. I cried in frustration, in pain. Wondering what I did to deserve the pain. I wasn’t even able to make people understand what I was going through. I did not have the diagnosis of my illness and my friends commented about the IBS they suffered. I knew I did not have IBS. IBS did not hospitalise people for a week every month.

chronic illness
Attached to the drip
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Lack of circulation
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another hospital admission
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Nutrition drinks to give me the vitamins and minerals I needed

I felt alone. I felt miserable. I felt my life had been taken away from me.

In summer of 2017 I applied for a course in the college of further education. I was given the date for my interview shocked I could be deserving of this and then I realise. I sent the email to the course co-ordinator crying. I told her I could not make the interview as I had a hospital appointment. I punched the wall; I fell to the ground. WHY. WHY. WHY. Just when I was finally conquering my mental illness my physical illness was trying to kill me. We reschedule the interview and I got accepted into the course. At the start of that week I weighed 10.8 stone. The following morning, I came down the stairs to have a smoke My ankle was really sore, and I pointed out that it felt like I sprained it. It was six days before my hospital appointment in Dublin to have another colonoscopy and hopefully get answers.

THE DIAGNOSIS

Over the next few days, I became bedbound. My legs had come out in what looked like circular bite marks and I could not put weight on my ankle. My joints were hurting, I could not eat or drink. I just lay in bed hobbling back and fourth to the toilet every five minutes. I was bleeding heavily from my stools and my temperature was high. I made it into my appointment, and everything was ready to go but then the doctor noticed I was bearing all my weight on my left ankle. She asked had I hurt myself or fallen and I replied that I had not, it just started. It was then I showed her the circular marks all over my legs and she told me she would be back.

A man appeared in a suit with the other doctor and introduced himself as the consultant looking after me. He asked me to show him my legs, so I did. Then they started talking medical terms. Anxiety going through the roof but hey ho. They told me they would take me into the theatre. When in the theatre the doctor asked me had I lost weight and that I was very thin. I just shrugged. I watched the screen while the medical equipment plucked and pinched the insides of me. I watched my intestines bleed on the screen, and I cried with the pain. They told me to try bear it out, but I couldn’t. I was returned to the recovery ward wondering if I was going home. The consultant came back and told me I was very sick. My bowel was tissue thin, on the verge of perforating and if it perforated, I would be dead in days. I didn’t care anymore. I was done. I had gone to A&E ten days prior and they had sent me home telling me I was fine. How could I trust these doctors to help me? I had been suffering every day for the last two years.

I stayed in hospital for the weekend unsure of what was next. There was a high possibility I was going to be getting a colostomy bag on the Monday. The Monday I was due to start college. I was diagnosed with severe crohn’s disease and I now weighed just over 9 stone. I had lost 1 and a half stone in ten days. I need infusions of IRON, vitamins and minerals of every kind and I was placed on IV steroids. The steroids stopped my bowel from perforating, but I was not well enough to be discharged. I emailed the college and explained the situation telling them I would be discharged in the next day or two.

Instead I was placed on a drug called infliximab. I had to sign off on a five-page waiver acknowledging that I was increasing my risk of cancer. Infliximab was originally designed as a chemotherapy to treat cancer. I asked the doctor if this drug would make me sick? He replied

“Katie crohn’s disease does not kill you, but the side effects of it can and if you do not take this drug it’s very possible you could die”. I felt like I didn’t really have a choice, so I agreed to the infusion and I began my crohn’s treatment. Within days I was back to myself on the inside, but the outside was a completely different story. I was severely bloated; I was unable to put on shoes because my feet were so swollen.  I hated myself. I couldn’t stand to look at myself but after a few days the swelling eased and I was discharged. I would need to come back to the hospital for 3 hours every 3 weeks to have my drip of therapy. rEAD ABOUT INFLIXIMAB ON THE LINK BELOW

I finally started college two weeks late. I was well enough to attend but I was still exhausted from my anaemia. The treatment worked well. I wasn’t sick anymore. I was on a euphoric high. I had forgotten what it was like to be able to live. I hadn’t lived in so long. I had only suffered and existed.

It is now August 2020 and I have only had two admission to hospital for my crohn’s disease. In two years, two admissions its fantastic results. I went into remission shortly after I started the infliximab. I know crohn’s disease cannot be cured but while in remission I have to enjoy every bit of my life.

I will relapse over the course of my life with my chronic illness, but it doesn’t overwhelm me to the point of suicide anymore. It is what it is. I did not ask for this illness but like someone with diabetes you just have to get on with it. Learn to live with it. I was misfortunate to get it, but I am not alone. I used to have an Instagram account dedicated purely to crohn’s disease and I found a community. A community of people of all ages, all ethnic groups, from all over the world living with chronic illness. It made me feel like it was bearable to live with this burden. I did not get crohn’s disease because a GOD wanted me to suffer. It just happened and I realised that while I suffered day in and day out, I was alive. Other’s hadn’t been so lucky. There is always someone out there better off than you are but there is also someone worse off than you are.

We were given this life to live it. I cannot go to the store and pick out a life without chronic illness. That is only a dream of an alternative reality. I had to accept that I was given this life for a reason and I could lump it or like it, but I would never be able to change it.

Does complaining about the unjust of it cure it? Absolutely not and if I have the attitude of a poor misfortunate soul, I will never get to experience all the good in life.

I put my pity pot away and I moved on.

Life can be good. Life can be bad. We have the power to look at it differently.

To look at my life and choose to complain about all the bad won’t get me anywhere. If I choose to look back on it angry and upset, then I am not living in the present.

To live in the present with a strength and resilience life has taught me, to overcome any obstacle knowing I have already overcome so many. To strive for my dreams and aspirations with the enthusiasm of the present moment, That is living, and I choose to live in the here and now.

Chronic illness is a pain in the ass (pun intended) but one cannot be defined by the illness. My name is Katie Woods and I am me. I do not introduce myself and say HI I am a life of chronic illness because that isn’t who I am. It is the disease I suffer with and I am so much more than it.

I am Katie Woods and I choose to live.

Regardless of the darkness in the past I choose to live here and now, and I choose to create a bright future.

Happy reading guys

Lots of love katie xx

For more information on chronic illness click the links below.

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