My daily routine living with . . . inflammatory bowel disease
Four women discuss day-to-day living with Ulcerative Colitis or Crohn’s disease
Inflammatory bowel disease (IBD) is a term used to describe a variety of diseases – including ulcerative colitis and Crohn’s disease.
Here are four young women’s stories about living with the disease.
I’m a 22-year-old student and mother suffering from an autoimmune disease called Ulcerative Colitis. I was diagnosed when I was 18 and that’s when my life changed completely. When in a flare, which is when the disease is active, I’m constantly back and forth to the bathroom all day. There’s lots of blood and severe cramping.
It makes it impossible even to prepare breakfast or stand for too long. I’ve had many hospital stays over the years. Ulcerative Colitis not only affects the intestines, but the whole body, with symptoms such as chronic fatigue, joint pain, mouth ulcers and brain fog.
Because I don’t look sick on the outside, it’s hard for my friends to truly understand what I’m going through and often I would have to quit plans and miss out on the whole college experience.
But it has also made me stronger, and made me realise people take their health for granted and I can appreciate the little things. When I tell people about my disease, the majority of people have not even heard of it. That is why I’m sharing my story to create more awareness.
I was diagnosed with Ulcerative Colitis in September 2006, just when I was about to start college at age 18. I’ll be turning 30 this July and it has been a rollercoaster over the last 12 years or so.
My symptoms started around my junior cert year really, but were mild so I put them down to stress and didn’t think about it until I reached sixth year. The Leaving Cert really took it’s toll on me and I suffered with terrible abdominal pain, back pain, severe diarrhoea, bleeding, chronic tiredness/fatigue. It got to the point where I weighed about 8st and my hip bones jutted out under my debs dress.
I finally got diagnosed after going to my GP several times and a couple of different gastroenterologist specialists. I have been on a multitude of drug combinations, had dozens of scopes (both ends!), have ended up in hospital with severe dehydration, have cancelled holidays, had to leave jobs and got extenuating circumstances in college for exams and continuous assessment markings.
After so much trial and error, I have hit on a good combination of medication, exercise and being mindful of what food I eat (which contrary to belief is not eating salad for lunch!).
I have gotten to a point where it is highly manageable, however, just last week, I spent two days on the couch with severe pain, fatigue and diarrhoea so it is unpredictable and can strike at any time.
The first thing I ingest every morning are anti-inflammatory drugs
The first thing I ingest every morning (even before a cuppa) are anti-inflammatory drugs. Then, after brekkie, there’s the immunosuppressant drugs, an anti-spasm tablet and a multi-vitamin.
There are 40,000 people in Ireland currently with Inflammatory Bowel Disease (IBD) – ulcerative Colitis or Crohn’s disease – and it is not recognised as a long-term illness so medical cards, etc, are all given on the basis of income etc, which is outrageous as the medicines and other treatments (massage, food intolerance testing, herbal meds, vitamins, etc) can cost a fortune.
I am lucky enough to have a medical card, but my meds per month work out at about €1,000 when I’m good and on a bad month much more.
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A chronic illness? A bowel disease? Me? Why me?
These were the constant questions I asked myself every day for three months straight. It’s hard to come to terms with something so life-changing, and not for the better. I suffer from Crohn’s disease, a chronic Inflammatory Bowel Disease (IBD).
I was diagnosed just over seven months ago, one month before my 23rd birthday. I was having the time of my life on my year J1 visa in New York City, when suddenly I had to cancel my internship and visa and come home straight away, as my insurance didn’t cover the treatment I needed in the States.
When I was diagnosed in May last year, every day was a struggle, especially since I was sick for the whole summer. I lost so much weight in New York between sitting in my apartment in Queens unable to move, eat or drink for two weeks straight. I was completely malnourished from constantly vomiting and going to the toilet, I was as white as a ghost and severely anaemic. I suffered from bad cramps and loose stool movements – and not the usual stomach cramps, it felt like someone was trying to tear out my insides.
On top of that, I was constantly bloated, suffered from bad mouth ulcers, mood swings, hot and cold chills, weight loss, and the dreaded haemorrhoids. It was only in the last year that I started noticing a lot of blood in my stools (lovely I know). My whole body was in pain, from my joints to my muscles, and to my mental state. This led to me becoming quite depressed and anxious, making matters a whole lot worse.
I was taking several different medications at a time for over four months, but the worst of them all was the steroid called prednisone (anyone who has been on these can sympathise with me). These are truly the worst steroids in the world, I gained so much weight, I suffered from moon face, which made me look like a chipmunk (and not a cute one). I started receiving Infliximab (Remicade) infusions every two months, which is an auto-immune suppressant drug used to treat IBD.
This was all going on while my friends were out enjoying their summer, it was the worst few months of my life. I also dealt with a bad infection (C-diff) that really affected my treatment, which set back my road to remission. A lot of my friends didn’t really understand exactly what Crohn’s was at first, same with my family and of course, I don’t blame them, I barely knew what it was.
To be honest, I still don’t think they really understand how it affects me both physically and mentally, I mean how can they? Cancelling plans last minute isn’t because I don’t want to see you or spend time with you, it’s because I genuinely feel like crap. My friends are off to the UK in February for a girly, booze-filled trip. As much as I would love to go, I know that my body would just crash and burn.
The symptoms come and go, but mostly I do suffer with them, whether it’s pain, fatigue, constant bowel movements, or just not feeling happy and sociable in general. I don’t “have” to avoid certain foods, but I do and anyone with this disease will know what I mean by that. If I want to avoid pain and horrible symptoms then yes, I do “have” to avoid certain foods. For me, vegetables high in fibre seem to make things worse.
I also get a lot of people telling me how amazing and healthy I look, and yes that’s a nice thing to hear, but it’s not necessarily the case. Some days I’ll be sat at my desk at work in excruciating pain, hunched over, goosebumps and shakes going through my body and I look fine, absolutely fine. No change in colour, no redness, just the pain that hides inside my body. A lot of people don’t really understand exactly what IBD is. The publicity and acknowledgement of Ulcerative Colitis and Crohn’s disease in Ireland is shocking.
No one knows how it’s caused, the right treatments to use, yet more than 40,000 people suffer from this chronic and life-term illness! Something needs to be done, and that’s why last year I decided to volunteer for the ISCC (Irish Society for Colitis And Crohn’s Disease) to spread awareness.
This disease has changed my life in many ways, but the one positive thing I’ll say about it all is that I have become a much stronger person because of it. I try to live each day as a brand new day and remain positive.
Hopefully, that will get me through life a happy and (somewhat) healthy woman.
I was diagnosed with Ulcerative Colitis in November 2016 at the age of 24. At that stage I’d been struggling with stomach problems since the age of 18 and over time these problems had been getting progressively worse. I was referred to the Mater hospital by my GP and told that I was probably suffering from IBS (Irritable Bowel Syndrome).
After years of hiding my symptoms and making excuses, things suddenly became really severe and I could no longer hide. I had just gotten back from a holiday in Greece with a group of my friends when I had to leave work. I was experiencing constant fever symptoms, I fainted a few times and I was going to the toilet about 15-20 times a day. Not only this but every time I had to use the toilet I was losing blood (yeah, not pretty) which made me severely anaemic.
I was sleeping 18 hours a day and got down to about 6st. I was brought into hospital and a number of procedures were performed, including a colonoscopy, which then resulted in the diagnosis I had known was coming but had always feared the most.
To be told at 24 that you have an incurable but “manageable” autoimmune disease is incredibly frightening. I tried my hardest to act as if I was coping well with this new life because I was very aware of the effect that my health would have on the people around me. I didn’t want to worry my parents and friends.
I thought I could get it under control quickly and everything would go back to the way it was. I was wrong. The first six months after diagnosis were hell on earth. I developed severe anxiety about leaving the house as a result of my illness and symptoms. I tried to return to work and then became depressed when I failed miserably. My relationship ended. I had no appetite and couldn’t put back on the weight which resulted in me feeling really badly about my body and appearance.
I was taking steroids called Prednisone for the first three months and they made my face swell up, my hair fall out and also added massively to the anxiety and depression I was already dealing with. I began getting Infliximab (Remicade) infusions to suppress my immune system every eight weeks. That eventually had to be changed to every six weeks because my symptoms were still quite severe and the medication wasn’t lasting long enough.
Fourteen months down the line after diagnosis I am still struggling to manage the disease, but things are much easier. You get used to being sick. With a suppressed immune system you pick up every single bug going around so I’ve ended up in A&E a couple of times with various vomiting bugs and dehydration, but I’ve never valued the support of my friends and family more than I do now. I no longer take things for granted. Sure, I may not be able to drink and go out and have mad weekends anymore but I’m okay with that. It could have been worse.
When I’m having a bad day I remind myself that someone else would kill for my worst day. I’m lucky in a sense. I remain hopeful. I remain hopeful that I’ll go into remission. Hopeful that I’ll go back to work full time in order to be able to support myself. Hopeful that I’ll find someone who’ll want to take me on . . . bowel disease and all. Hopeful that I’ll have a family of my own one day and that I’ll be fit enough and strong enough to look after them properly.
I just want what everyone else wants. Things have improved a lot though. I have more good days than bad days now. I only suffer with very mild anxiety issues on occasion now and the fog of depression has lifted. I’m doing an online course and applying for part-time jobs in an attempt to ease back into work life.
I take pride in my appearance again and no longer hate my body. I try to go out and spend time with friends when I feel up to it and can afford to. I’m dating again and I’ve found that generally people are very understanding when you give them the opportunity to be.
It means making yourself vulnerable, which can be terrifying, but like I said . . . I’m hopeful.
- If you would like to tell your story for this series, you can do so here. Alternatively, you can email firstname.lastname@example.org (please write "Daily Routine" in the subject line).
Damian Cullen (Health & Family Editor)
SOME OTHER ARTICLES IN THE SERIES
- My daily routine living with . . . Cystic Fibrosis
- My daily routine living with . . . Parkinson’s Disease
- My daily routine living with . . . lung cancer
- My daily routine living with . . . inflammatory bowel disease