19th November: World Toilet Day – Why Inflammatory Bowel Disease is so much more than “just a toilet disease”.

One of the horrible symptoms of Inflammatory Bowel Disease (IBD), which I suffered with to a great extent before my stoma surgery, was the sudden & frequent urge to go to the toilet. This would often be accompanied by nausea, extreme pain in my intestines and rectum, blood and mucus in my poo & sometimes I literally felt like my guts were about to explode.

Narrowings within my large intestine (colon) and rectum (just inside my bum) often made going to the toilet feel like an extremely painful workout that I would not wish on anyone. My fingers and toes would often go white from me tensing & clenching to get some relief. I would also often break a sweat on the toilet from the agony, pressure & nausea associated with this. When my disease was most active (also known as experiencing a “flare up”), toilet trips would range anywhere from twenty on a good day to between fourty and fifty times at the worst. I would also experiences shifts between constipation and diarrhoea and frequent episodes of trapped wind.

Understandably, during these times, I was reluctant to leave the house & I frequently didn’t because the anxiety & fear of pooing myself just wasn’t worth it. When I couldn’t eat, I also feared fainting when I was away from home from feeling so weak & often feeling dizzy & surreal, almost as if I wasn’t sure if my existence was real or not at times. Everything felt very floaty & I would frequently dissociate with my surroundings due to the exhaustion. The bathroom became a “safe place” that I grew to hate. I felt like there would never be a life which wasn’t controlled by my Crohn’s Disease & having to be uncomfortably & unwillingly so close to a toilet.

Being dependant on the toilet can be just the start for most

However, I believe it’s important to also focus on the other things that Crohn’s Disease & IBD causes. It isn’t just a “toilet disease” and unfortunately, often due to lack of education on the subject rather than ignorance, people are often quick to judge & think IBD basically means you go to the toilet more & have more upset stomach difficulties than others.

Inflammatory Bowel Disease can become serious & can also be life-threatening. It nearly took my life & I also sadly know people such as my Uncle who it has taken. This post isn’t to scare anyone but more it’s to help people to understand that often being dependant on the toilet is sadly one of many symptoms & difficulties which we can face.

Moving away from “toilet symptoms”

So, what other things can Inflammatory Bowel Disease cause? This isn’t a simple answer. Every individual who has IBD will experience different things in varying degrees. Some people may only get mild & few symptoms, whereas others may get numerous symptoms which can often lead to other health issues & complications.

To try & simplify different symptoms, we can split them into two categories: intestinal and non-intestinal. We can then also link associated conditions to these symptoms.

Intestinal symptoms

Above image from About Kids Health 

These are the symptoms which you could class as “toilet symptoms” as explained above and can also include lack of appetite, bloating & weight loss as I also experienced. These symptoms are often primarily triggered by the ulceration of parts of the digestive tract depending on what type of IBD you have. You may classify them differently depending on how you view them, but to me weight loss is very much a cause of intestinal symptoms, even though it affects the whole body, so there’s arguments for where you may categorise them. However they are categorised, it’s vital that they are recognised so that effective treatment can hopefully be put in place.

Symptoms in other parts of the body

Before my surgery in 2011, I experienced many symptoms which were not purely linked to the digestive tract but were definitely linked to Crohn’s Disease such as:

• Delayed growth and puberty
• Sore eyes
• Tears in my skin & at the side of my mouth. I experienced tears around my anus & in other areas of my body such as fingers.
• Fevers and sweats
• Joint pain
• Feeling weak
• Fatigue
• Delayed and irregular periods
• Weight loss (see above)
• Frequent urinary tract infections (UTIs)
• Finding it difficult to get warm and stay warm
• Mouth ulcers
• Feeling generally unwell

This list is not exhaustive, but it helps illustrate just how far-reaching IBD can be when it comes to impacting our bodies & lives.

Associated conditions

Above image from Everyday Health

There are many conditions which can be linked to IBD and the above symptoms such as:

• Depression
• Anxiety
• Anaemia (a reduced level of red blood cells – I get Iron Deficiency Anaemia)
• Inflammation in the eyes
• Brittle teeth – caused by different medication and symptoms such as persistent vomiting
• Arthritis
• Bone & joint disorders
• Skin disorders such as Pyoderma Gangrenosum
• Liver and gallbladder problems
• Cancer – this is usually linked to the extent and duration of the disease & is usually monitored for early detection through routine tests such as a colonoscopy

Again, this list is not exhaustive but is illustrative of how IBD can have such an impact on lives.

Just because you have IBD, it doesn’t mean you’ll also get several other illnesses

It’s important to remember that the severity and likelihood of related problems to IBD are different for everyone and just because you have IBD, it doesn’t mean the rest of your life is going to be a write-off with one illness or another, although I know it can feel all consuming at times & sadly some people do experience no end of problems.

My surgery in 2011 gave me quality of life & saved my life. It didn’t cure my Crohn’s Disease. There is no cure. Generally, with my digestive health I have relatively minor issues.

I am not on any long-term medication & haven’t been since my operation. I have had a few short courses of steroids to help smaller flare-ups and take pain relief when needed for scar tissue pain related to surgery. I also take medication to slow down my bowel when needed & liquid iron medication when I’m anaemic. On two occasions, I have had iron infusions down to liquid iron not being effective.

Seeing a light at the end of the tunnel

There were many times before surgery (too many to count) where Crohn’s Disease robbed me from the ability of being able to see a light at the end of the tunnel.

At my darkest points, I honestly thought I was condemned to a life of misery, constant agony & being a prisoner in my own home due to needing my bed and the toilet so often, whether mentally I wanted to or not. Mentally, I have always tried to show my Crohn’s that I’m the one who’s in control, but if you have IBD yourself, you will probably sadly know that sometimes your body has other ideas. During the toughest times, it robbed me of my independence & I felt it often tried to take my dignity. It took away many positive thoughts I had on my body & what I saw when I looked in the mirror. It took away many experiences I wish I could have had as a teenager & child.

When I got told I was going to have a stoma, this was my light at the end of the tunnel. Suddenly, I could see sunshine where there had seemed to always be big, dark clouds and endless storms. To cut a long story short, recovering from stoma surgery was definitely a challenge but one I would do again to have what I have now, feel how I feel & be able to experience all the things I can do all thanks to my stoma saving my life.

I am not without my problems, but I’m now in a place where I’m much more able to deal with them as they seem so minor compared to life pre-surgery. Health issues never fully go away for me and at one time there is often a few things in the mix for me to deal with, but I have much more resilience, strength & resolve to get through those times from being able to develop a life rich with so many experiences & good things to keep me going in times of difficulty. I have been able to explore & try new things & learn more about who I am as a person which has shaped me into the person I am today.

For me, having stoma surgery wasn’t the end of my story, it was just the very beginning.