An IBD Warrior’s Story

The ‘bathroom dash’, as I call, it is all too familiar with Inflammatory Bowel Disease IBD sufferers and if it was declared an Olympic sport, there is no doubt that Usain Bolt would not stand a chance against any of us for that gold medal. Every IBD sufferer will have a different story to tell and this is my own experience and journey. I personally like the term ‘IBD warriors’ because that is really what we are. We are fighters and we fight every day against this horrible disease.

 

I was diagnosed with Ulcerative Colitis in February 2013, after stupidly ignoring my symptoms for years. I had just started a postgraduate degree and was excited about my new venture, but I ended up with a very aggressive form of the disease without ever really going into remission. There are many opinions regarding the aetiology of this disease and for me genetics and stress played a major role. It was only after I was diagnosed that I learnt of two close family members with the same condition. I suppose it’s not exactly something discussed at family gatherings as it has the stigma of being an embarrassing condition.

 

I learnt so much about this disease through my own research and discussion with members of an Ulcerative Colitis support group, more than I did unfortunately from any healthcare professional. This is a disease which is so individual to the person, varying in its degree of severity and in management and treatment. It is one of those ‘invisible diseases’ which people do not know a lot about and hence cannot understand why you look so healthy and normal. There are many other invisible diseases which we need to be cognisant of and I have learnt through my own experience not to be judgemental and assume that someone is healthy just because their physical appearance suggests this.

 

This invisible disease can and will rear its ugly head at any time, without any warning and one has to be prepared for not just the physical impact but the emotional and social stress that it causes. As clichéd as it may sound, Ulcerative Colitis is one of those diseases that you really have to experience yourself to fully understand the extent of it. Friends and family initially did not understand why I was ill for such long periods, why it was not ‘going away’ and that this is a chronic disease.

 

Everyone compliments you on how good you look for your weight loss but no one is able to understand the constant pain that you are in, the endless trips to the bathroom, the accidents, the anaemia which goes with it, the rheumatoid arthritis which decides to jump on the bandwagon, the hair loss, the constant fatigue, the depression which sets in, the feeling of just wanting to curl up into a ball to nurse your aching abdomen and the desire to actually want to die as you feel so defeated that you think death is the easy way out.

 

A Passion for Food

IBD Warrior - Nursing Matters

 

Being a big foodie this cruel disease robbed me of my passion for food and two years of my life. I guess I was lucky, as many IBD sufferers are robbed of many more years. Not being able to enjoy food which is the epitome of every great social event, every occasion and every gathering was the biggest curse. Coming from a culture where every ailment involves remedy with food did not help. Kind friends tried to cook for me but I was unable to tolerate so many things. People offer advice about what you should and shouldn’t eat but nobody knows what it’s like to not be able to eat. I cannot and will not offer a fellow Ulcerative Colitis warrior any dietary advice. I can merely tell you what helped me and my advice would be that diet is trial and error and you need to find what works for you.

 

The continuous flare ups resulted in me visiting the land of stethoscopes on numerous occasions. Repeated trips to A&E due to severe dehydration, blood loss, adverse reactions to immunosuppressive drugs and hypoglycaemia, took its toll not just on me, but also on my family, as one becomes so consumed by this disease its easy forget about how it impacts on loved ones.

 

When You Are Better We Can Do Or Go…

IBD Warrior - Nursing Matters

 

The topic of discussion everyday always started with ‘when you are better we can do or go….’ I tried every diet possible, tried all the immunosuppressive drugs available and even natural remedies but alas nothing worked for me. Steroids were the only drugs which afforded any relief. We all know how wonderful steroids can be…especially if you are taking them for a long period. No one can understand why you are angry or why you are getting up at 2am to eat. You don’t understand your mood swings either. The moon-face and terrible skin add to your anxiety about your appearance.

 

I stopped going out apart from going to work. I stopped cooking, not being able to bear the sight of food. I did not get any sleep due to my constant trips to the bathroom at night. I had dark circles around my eyes and could not bear to look at myself in the mirror. I cried constantly, in private, because I just wanted to be well. I did not eat if I had to leave the house and only ate at home as I knew there would be a bathroom close by. No one believed me when I told them that I had to run to the bathroom as soon as I put something into my mouth. A consultant told me that it was medically impossible. Having some medical background I knew this, but I was also the one living with this disease. I eventually stopped eating but tortured myself by watching cooking programmes and my husband and I laughed as I salivated during Man v Food, wishing I could eat things I normally would run away from.

 

IBD Warrior - Nursing Matters

 

The joy of learning that I was entitled to a disabled toilet key was shared by members of my family. When it fell through my letter box it was greeted with cheers and laughter. No more waiting for me! This huge radar key looked like it could open the door to a castle….for us warriors it did open the door to a castle. The monumental key however was not to be used, I felt too uncomfortable and worried about what other people would think, after all the stares and tutting from people are enough to embarrass most warriors.

 

IBD Warrior - Nursing Matters

Bathroom Dash

I had to cancel holidays and days out with friends sometimes at really short notice. I missed birthday celebrations, work dinners and other social gatherings. I would get dressed and ready to leave the house and then the awful pain and cramping would start and I would have to make a mad dash to the bathroom. I missed deadlines for my university assignments and spent some of my days in hospital working on these assignments as I was kindly given extensions. When I did have lectures I dosed up on loperamide and morphine, sat near the exit so I could do the ‘bathroom dash’ when I had to, and nodded off repeatedly. This disease was already winning but I did not want it to rob me of my degree as well. After all I was an IBD warrior!

 

I used a hot water bottle to relieve my symptoms and actually carried it with me in the car to work. I used it so much that it caused burns to my abdomen. I needed to take about 10 loperamide just to leave the house and drive 30 minutes to work to prevent an accident. One consultant told me that this was psychological. IBD warriors know that you cannot control bowel movements. It was torture as I sat in traffic on some days. I had to cut my days down at work and suffered a huge financial loss. Eventually I was forced to stop working as I awaited surgery. I did not even realise that I had gone into a state of depression. I told my husband several times that I wanted to die and I meant it. I was scared to leave the house in case anyone commented on my weight. I did not want to see my friends as I was jealous that they were healthy and I was not and I was fed up with talking about my illness. I was angry that I was the one with this disease and that I had no control over it. A fellow warrior reminded me that ‘I didn’t choose this disease, it chose me’.

 

Its a Pain Being in Pain

My weight plummeted to about 8 stone and at 5 ft 9, I was not surprised when I was told that I was malnourished. My doctors were concerned that my liver was not functioning at its optimal level. Getting out of bed and having a shower was an absolute triumph for me as it took every ounce of energy to do so, energy which you cannot waste. I spent days in bed, physically unable to get up. As a dentist I was concerned about my sugar intake as it was what I reached for constantly. I could not tolerate anything healthy and craved fruit and vegetables which worsened my symptoms. You eat what you can tolerate when you are in a flare up and you eat when you can. If it’s unhealthy so be it, I didn’t care at that point. I just wanted it to stay inside me.

 

When I started taking Azathioprine, I felt like I had been hit by a bus. It completely floored me and I had to cancel my list of patients and go home. I threw up constantly and my bowel movements worsened for the four days that I took it and I ended up in A&E with severe dehydration. Six Mercaptopurine had the same effect. The twelve Asacol tablets which I took daily were not helping either and sometimes just passed right through me whole. At one stage I was taking twenty tablets daily. I became anaemic and was prescribed iron tablets which worsened my symptoms. Remicade infusions were futile. I could not fit into my clothes due to the weight loss and to most females this may sound great.

 

Don’t Forget Your Sense of Humour!

IBD Warrior - Nursing Matters

 

Someone once commented that she wished that she had a ‘touch of Ulcerative Colitis’ so that she could lose weight. What on earth can you say or do other than wanting to give them a good telling off? I suppressed this desire and with the support of other warriors realised that people are just not aware of the seriousness of this disease. I joked that I could eat whatever I wanted to. You have to make light of the situation too.

 

When I told someone that I had Ulcerative Colitis, his response was ‘It could be worse; at least you don’t have cancer’. Everyone knows about cancer and I myself did not fully understand when a patient of mine who has Crohn’s disease told me that he wished he had cancer instead. After twenty trips to the bathroom one day, vomiting non-stop for four days and crying from the pain I understood what he meant. People do not realise that IBD is also serious enough to cause death.

 

Hope

IBD Warrior - Nursing Matters

 

I was tired of fighting and had to admit defeat so I agreed to surgery and said goodbye to my colon. It is now a year since I had surgery and with great support from my family and friends I have my life back. I managed to finish my postgraduate degree and I can actually eat!! It is wonderful to be able to go out and not look for where the toilet is. It is wonderful to be able to leave the house and to work again. It is wonderful to be able to go shopping, to cook, to go for a walk……only problem is I need to go on a FitNurse diet now, a small sacrifice to make for my health and happiness!

 

This week I shall be sharing links to support groups, the facts and fiction around diets, the research on natural remedies and traditional medication and of course the surgical options, so please visit Nursing Matters soon.

 

I will also be wearing my purple scrubs today in support of every IBD warrior. You don’t have to wear purple but it might put a smile on someone’s face!

 

In the meantime, please check out the Crohn’s and Colitis UK website for further information.