The Chronic Diaries: Karen’s Journey With Crohns Disease
Where Are You Based?
Co. Kildare, Ireland.
What Chronic Condition(s) Do You Have?
Crohns disease with arthritis.
What Symptoms Did You Deal With Before You Were Diagnosed?
I was extremely sick for over a year prior to being diagnosed. In 2016, I was facing into my final year of college after spending an amazing summer on J1 in New York City. In December 2016, I had a really bad kidney infection that took 3 months for me to overcome. I was prescribed 7 different antibiotics to try to fight the infection. I was very weak and in a lot of pain with the infection and was unable to sit my Christmas exams (which ironically enough, take place in January in Maynooth University!) The infection cleared eventually in March, 2017.
In May 2017, I had a knee injury and I was attending a physio for a number of months with my complaint. After nearly 3 months (May to August) of getting physio treatment and various scans to get to the root of the problem, my physio told me that she had a strange feeling about this injury and could not figure out why the injury had not improved. I had acupuncture treatment, electric acupuncture treatment and had to do exercises at home and there was still no improvement with my knee.
Fast forward to September, after much consideration, I decided to repeat my final year in Maynooth and was motivated to complete this phase of my education with a decent degree grade.
A few weeks into semester one of the repeat year, I was sitting in a tutorial and towards the end of the class was in agony with back pain and broke down in a tutorial with the pain as I couldn’t get out of the chair I was sitting in. The tutor had to phone my mam to collect me. My mam brought me to my GP who prescribed Difene for the pain. Thankfully the back pain was resolved two weeks later. My knee pain began to resurface again once my back pain had “gone away”.
In November 2017, I travelled down the country to a family gathering and I felt my leg was extremely heavy, such to the point that I was dragging my leg while walking. I put this down to being sat in the car on the hour and a half long journey to the event and sitting in strange chairs at the event.
The next morning was a Monday, I had an assignment due in class at 9am. I woke up in agony and my left leg had swollen and my ankle had swollen to the size of a tennis ball. I was on my own in the house and could not get out of bed with the pain. I spent over an hour lying in my bed (thankfully I was in the comfort of my own bed!) figuring out how I was going to get out and drive to Maynooth to hand in my assignment.
By the time I got out of the bed, I was starving! I struggled to get a sock on my foot and of course could not put a shoe on my foot. I crawled into my brother’s room where I knew he had kept his crutches he had used for a previous injury. Grand! I pulled myself up on the crutches. I reached the top of the stairs and had to “bum it” to get down the stairs.
I eventually drove to Maynooth. In hindsight, now, I realise I really should not have, as I could barely straighten my ankle to put in the clutch.
As time went on both legs began to swell and both my arms, wrists and elbows swelled. The swelling of my joints continued for a fortnight. I went to visit a physio four days after the first sign of swelling. At this stage I was beginning to lose feeling in my toes and my foot would go numb and then swell. She advised me to visit my GP.
I could tell by the reaction of my GP that she was taken aback by how much my ankle had swelled and she was quite concerned. She wrote a letter for me to attend A&E. I began to get seriously worried when I was advised to visit A&E. I am a very squeamish person and hate hospitals so this added to the pain!
I went to A&E that evening, had a scan and the doctor returned to say there was no damage to the bone. He mentioned that it could be linked to Arthritis which really concerned me. A few days later I was back with my GP who arranged a visit to a rheumatologist and prescribed me with a very high dosage of steroids.
The rheumatologist did many blood tests and touch tests with me. He said he couldn’t be definite that what I was presenting with was arthritis but he did feel it was something along the lines of autoimmune trouble. He talked me through the various medication I would have to take if it were arthritis. I was shocked to hear the severity and the implications of the medication he recommended I take to treat my swelling joints. I remember leaving that appointment with a gut feeling that this news wasn’t right and arthritis was not what was wrong with me. I am no fortune teller, but we all know the feeling when something doesn’t sit right within us and this was the very feeling I had.
All the while I was going through this health difficulty, I was trying my very best to attend college everyday. It was a complete struggle. I was still using crutches to get around campus. If you haven’t had to use crutches before, you really don’t realise how tiring they are! I was exhausted everyday. my normal everyday life was now becoming a struggle and I, both mentally and physically, was really struggling. I was so unwell; I was weak, exhausted and my swelling wrists and painful elbows would not allow me to sit my 2nd round of final year January exams.
In March 2018, two months later, I attended my GP again. This time with another ailment. I was struggling to eat normal everyday meals without having chronic abdominal pain thereafter. I would have to curl up into a ball or get on the floor on all fours with painful cramps. I cannot praise my GP enough, she really listened and showed empathy throughout my complaining. She wrote a letter to a gastroenterologist to organise an appointment for me urgently. Luckily, I only had to wait two weeks before I received a call for an appointment.
By the time I met the gastroenterologist (March 29th, 2018), I had ulcers in my mouth and both my eyes were bloodshot. My gastroenterologist told me that the ulcers and bloodshot eyes were a sign/symptom of ulcerative colitis/crohns disease. She had a read through of my various blood results and did a manual examination on me. She could feel the right side of my stomach was swollen and sensitive to the touch. After reading the blood test results she said to me that I really must be struggling, finding life difficult and feeling extremely tired all the time. I couldn’t agree more with what she was saying. It was the first time someone could put into words exactly how I felt and it was the first time I felt someone finally understood what I was going through.
She organised an emergency colonoscopy for me the following morning. I had to fast that evening and had to drink two litres of Moviprep (GAG!) in preparation for the examination. I was extremely weak and was in agony with the pain on the right side of my stomach. I was brought through for the colonoscopy within an hour of arriving at the hospital.
I don’t remember much prior to the colonoscopy. I woke up during the colonoscopy to the sound of my own painful groans. I can still see Dr. Ryan standing to my right and I can still see the image of the inside of my colon which was showing on the screen.
Once I came to after being sedated, Dr Ryan asked if I remembered waking up during the exam, I told her I did. She reassured me that this rarely happens to patients. She informed me that my colon was severely ulcerated and inflamed and this was the reason I woke up. She told me that my colon and rectum were severely ulcerated and diagnosed me with Crohns Disease. Even though I was still somewhat weak with the sedation, I was so so relieved. I have never felt relief like it! I always knew there was something not right within me, while I had met various medical practitioners, who I have the utmost respect for, despite them being unable to diagnose me, I knew there was something wrong with me. I was knocked down so many times by being undiagnosed with something. I began thinking and asking myself “is this all in my head?” “Am I looking for attention?”. I just cannot describe the relief I felt, I didn’t care about the diagnoses.
About three months after my diagnosis, I was coping with self-injecting and the major life changes I had to face really hit me like a tonne of bricks. I had taken over 500 steroids, piled on weight, had a face that was the size of the moon and had to cook my own separate bland food. I had gone from 9 stone to 12 stone and I felt every bit of that weight. I really struggled at this point.
Since then, I have learned that this illness will always bring about struggles and I will always have an emotional struggle with this disease.
I had taken 5 months sick leave from my part-time job and eventually had to hand in my notice that I would not be returning to work. I had never been out of work since doing my Leaving cert in 2012. This really took its toll on me and affected me mentally too. I never realised until then, how important it was to have a job, a routine and friends to check in on you. During this time and prior to being diagnosed, I lacked all of this. I was so exhausted with life, I took a lot of that anger and frustration out on my closest friends because, just like me, they couldn’t understand what I was going through. They couldn’t understand the tiredness I had everyday and the pain I was going through every day. I struggled with the simplest thing in life; holding things in my hands, walking, driving, eating.
Being out of work affected me mentally, because I had so much time to think about the tiniest things. I overthought everything. I even got angry and upset about things I had said and done years previous.
I am quite a social person and I was never phased or nervous to meet or get to know new people. Spending so much time on my own changed this. My GP told me that I lacked in Vitamin B12 and this has a massive impact on the nervous system. This combined with being on my own for such long periods of time caused me much anxiety.
I felt sorry and guilty to my parents too. I felt I was being selfish when I would get upset about having Crohns Disease. They witnessed a lot of my sickness and deterioration in those two years. When my legs swelled, I had to get help from one or both of my parents or my brother. I remember my dad having to carry me up to bed one evening because I couldn’t stand up and use my legs. I often think how difficult it must have been for my parents to have to do that, see my deterioration but yet stay positive for me and my wellbeing. Having to pay university fees for me but being unable to attend lectures. These thoughts greatly impacted me and my eyes fill now while I type this thinking back to that time. A parent should never have to see their child suffer.
Being diagnosed with Crohns Disease, when I look back on it now, was the easy part. it’s the time since then that probably has caused me the most upset. I am very vulnerable to illnesses and viruses because of my medication which is an immunosuppressive drug. I lack in many vitamins such as Vitamin D, calcium and can be very anaemic. Lacking in all of these are due to my medication and my immune system in overdrive trying to fight the ulcers in my colon and rectum. I have many other side effects from Crohns Disease that are a bit too gruesome and personal to write about and for someone to read about! Inflammatory Bowel Disease is not very sexy!!
Did This Journey Have An Impact On Your Daily Life?
I eventually sat my January exams in August 2018 and I can gladly say I GRADUATED in October 2018! It was a day full of emotion. I think myself and my parents were the only ones tearing up during that ceremony!! I truly, after all the setbacks, never thought I would hold that certificate in my hand!!
I began my PME in April 2019 and I will graduate (FINGERS,TOES, EVERYTHING CROSSED!!) in April 2021.
Are You On Any Medications?
Yes, I am on immunosuppressive treatment. Hulio which is a sister drug of Humira. I was changed from Humira to Hulio during the summer. I also take probiotics, multivitamins and iron supplements everyday.
What Side Effects Do You Encounter, If Any?
Pain when writing at times or after long periods of time; due to arthritis in joints from Crohns. When this happens, I can feel every little bone in my fingers. Exhaustion/ chronic fatigue like no other person could imagine! cramps, joint pain (feet, ankles, elbows). Anxiety, worry, anger, left out, overall body pain, brain fog is a huge one and I feel it impacts me in everything (affects my memories with family/memories and conversations with friends/career. I make endless lists!!) loneliness, depression, fever – sometimes feeling constantly cold, weight gain, nausea. urgently needing the toilet without any prior warning. Bloating.
What Symptoms Of Your Illness Do You Deal With On A Daily Basis? How Do You Deal With These?
Brain fog (I make endless lists to try keep on top of things!), fatigue (a really difficult symptom to overcome) Bloating (another difficult one to overcome, I overheard a student one time ask another if they thought I was pregnant!), lack of motivation, anxiety. Struggle to get out of chairs.
What Occupation Do You Have? How Does Your Illness Effect Your Job/Employment?
I am a student teacher. Sometimes my legs can get tired if I have been standing too long and have to sit down. I am always conscious how this may look to management. Fatigue, again a major issue, I have to be in top form and well aware so this is a challenge in my job. Brain fog, not remembering things or getting confused.
How Does Your Illness Impact You Mentally?
Has a huge impact on me mentally. I suffer with anxiety and the smallest thing like sending a text or meeting someone new can make me extremely nervous and anxious. something I have never experienced prior to this.
I feel lonely at times and feel like a victim because of this illness! I ask myself the question “why me” a lot! depressed, emotional. I regularly lock myself away from the world to have a good cry! when I gained all the weight with the steroids, I felt like when I met an old friend etc, they’d be thinking “Jesus that one has piled on the weight!” and so I felt I had to defend myself with the excuse of my medication and my diagnoses. something which is very personal to share and not everyone needs to know that information about me, but I used it as a sort of scape goat!
How Do You Keep Motivated Dealing With Your Chronic Condition In Your Daily Life?
I have said from the very beginning that this illness will not define me. I will live with it. one of my favourite quotes is “only look back to see how far you’ve come” and I try to live by this on the tough days. Before I was diagnosed and I was struggling every day to use crutches and to go about my everyday life, I felt I was in a very dark place. the more I was knocked back by being undiagnosed, the less I thought I’d get out of that rut and now I have! I have come further than I ever imagined I would. I honestly thought I would never ever graduate. I thought it would have just been a failed attempt at university life, having spent 4 years there, only to end up dropping out! I am determined to become a teacher and I am now focused on seeing that ambition through. No autoimmune disease or worldwide pandemic, no matter how hard they try (!!) will get in my way and stop me. I have come too far to give in!
Is There Any Advice You Would Like To Give To People Who Are On Their Chronic Illness Journey?
Never give up. Trust that gut feeling, it’s very rare it’s wrong! You know yourself more than anyone else, if something doesn’t feel right, then it most probably isn’t!
Allow yourself to go through the motions. Be angry, be upset, be lonely, have that cry. All those feelings will pass and when the good days arrive on your doorstep, enjoy them! We know the bad days can go on and on but the good days are the best days and they make up for everything. The happiness and joy and feelings the good days bring last ten times longer than the bad days. The good days make memories for us.
How Do You Encounter People Having Your Illness? Do People Understand? Are They Ignorant? What Level Of Difficulty Do You Have With This, If At All?
Some people think they know it all but they know nothing! You can’t inform/ educate idiots or ignorant people so tell them something outrageous, that probably is not true about your illness, just for the craic and see how far they get repeating it to someone as if they know it all!!
IBD is a difficult disease to understand especially when you have no personal experience with it. Like I said, the symptoms are not very sexy and not very easy to discuss with just any one!
Is There Anything You Want To Say To These People? Or The General Public Who Do Not Have A Chronic Illness?
Be more open minded, understanding and have more empathy!
I have a pass to use the disabled toilet and only do so in an absolute emergency situation. I was shouted at for using that toilet “you’re not in a wheelchair” etc… Remember not all disabilities are visible. Mind your own!! Stop being so small minded and try to widen your aspects/horizons in life. Life is not as black and white as you may think. People in wheelchairs (for eg) are not the only ones who are disabled or chronically ill. People who are chronically ill don’t have to be laid up in bed or have long stints in hospitals. They can go about their everyday life. Sometimes that everyday life is a struggle. Just because someone looks “well” doesn’t mean they feel well. Not everything is visible to the human eye!
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