This week, to celebrate World IBD Day on May 19th and in aid of raising awareness of IBD and how it affects sufferers not just physically but mentally too, I will be releasing a series of blogs with contributions from the IBD community.
The list of linked symptoms is endless, from skin conditions and joint pain to fatigue and anaemia, and that’s not even beginning to mention the countless symptoms bought on by different medications and weakened immune systems - these are just the physical symptoms though.
The outside world never stops to consider what effects suffering an incurable disease, involving lots of embarrassing symptoms might have on a person emotionally and how this might affect their mental state. Even sufferers themselves often believe that they are the only ones feeling the way they do and this makes them even more isolated. Who wants to talk about how crappy their feeling right? How weak will they look?
There is no right or wrong way to deal with the emotional turmoil that being ‘sick’ undoubtedly brings with it, but, bottling it up doesn’t help ANYBODY.
Being diagnosed with IBD at the tender age of 19, having not experienced much in the world other than sex, drugs and alcohol and never having had more than a cold to deal with, IBD hit me hard.
I was diagnosed with a disease I had never heard of and a week later was having a surgery I’d never heard of meaning I was wearing a bag to poo in - I suffered mentally for the whole two years I had it.
After the first emergency surgery, the only thing that kept me going was the fact that it could be reversed. Then I had to deal with the fertility issues that would arise from having the second (Jpouch construction) surgery.
I was in a bad place. I hated the bag, I hated my life, I hated the way I looked, I hated ME. I didn’t want to leave the house or be seen by anyone. I didn’t want to socialise anymore and somewhere on this journey I completely lost my way and myself. I didn’t want to speak to people ‘like me’ which was suggested by my IBD team, I had isolated myself so much that I didn’t believe anyone was going through the same. I felt like my case must be the worst in the world and talking about it would have meant admitting it and I was too busy doing my ‘head in the sand’ routine.
My bag never stuck right. It would leak at the most inappropriate times, in the pub, in a shop and I always felt like you could see it through my clothes. I hadn’t joined any support groups or spoken to anybody so I was never made aware of the underwear to hide it.
I have since discovered that taking prednisolone has a massive effect on my mentality.
I don’t feel like me. My thoughts don’t feel like mine, but they’re the only thoughts I have and even though I know that if I wasn’t taking the meds I wouldn’t be thinking this way, it makes no difference, because I AM thinking this way.
I haven’t suffered anxiety due to IBD because I refuse to let it get me. If I crap myself when I’m out then so be it. I always have an emergency kit ready with tissues, knickers and wipes and I’ve been humiliated so many times that all dignity left a long time ago!
I still now suffer terribly with panic attacks and PTSD due to what happened to me I sometimes have flashbacks about surgeries I’ve had and anxiety that leads me to wonder if it's going to happen to me again. I am on constant Citalpram to try and stop this, it helps but the scared feeling has never really left me.
- Laura Pengelly
Yes I suffer with mental health issues partly brought on by my IBD. I suffer with depression and anxiety. Although these are managed by either low doses of medication or none, I often have days were depression kicks in as I can't do things with my 11 year old daughter or live a normal life with my partner and daughter as I’m stuck in the bathroom or too tired. My stomach will also cause issues of self loathing which makes the depression worse. I get anxious when out in case I can't find a toilet or if I'm going round someone's house that I will need to use their loo because of my IBD and then it will put off me. IBD has played a major part of forming my now mental health issues that I did not have before being diagnosed.
- Hannah Tingley
I’ve suffered from both anxiety and depression since being diagnosed with IBD. I think it’s inherently linked due to the dramatic change in lifestyle when prior to and after diagnosis, and the helplessness we all feel at trying everything in our power to make ourselves better, but never feeling like it’s possible to escape the situation we face.
- Cat Lodge
I do suffer from mental health issues, yea due to IBD. I have depression and also anxiety, because before I got diagnosed went through that stage when basically no-one believed me that I was actually poorly and they said it was all in my head.. Which didn't help my anxiety.
- Jaz Bingham
When you’re feeling poorly you don't want to go out so you can end up segregating yourself from loved ones a spontaneous night out can turn from a bit of fun to a total nightmare not knowing where loos are such can cause anxiety to rear its ugly head, I had suffered depression before diagnosis even supposedly from age 8 but it doesn't help what so ever and I know different moods are connected to how my tummy is
- Tracey Natasha Carroll
I have suffered for 18 years from very aggressive IBD that has robbed me of my career, several hopes and dreams and on occasion my happy positive outlook.
I have had many periods of low mood and upset. I have been treated for depression but it almost always correlates to how I am managing. If I'm stuck in a flair I get lower and lower and talking therapy helps,or in extreme cases where my health has been awful alongside a very stressful time in our lives (bereavement, poorly child etc)
talking and medication but never for more than 6 months. But each time my IBD improves or at least symptoms improve from strong medication or surgery I start to climb out of the whole once more.
My sunny disposition and strength of character have and are serving me well. I try desperately not to push my loved ones away from me and I dig deep. I try to think if I suffer at least a precious child somewhere doesn't.
It's a unusual logic I understand but it's my go to thought when the chips are down. I also look at what I do have . My wonderful husband, my miracle children and our home together. It may not be perfect and at times my condition and the fall out of hospital admissions and sheer fatigue etc can be a huge strain on us all.
I keep my emotions in check as in I am aware of how I'm feeling and if I need to reach out or vent or seek serious help. My family and friends help with this too. They know me. They see signs. I used to be able to hide so much but once you've lived with someone suffering a chronic illness and you love every ounce of their being you get to understand the peaks and troughs.
I grew up with a parent who has been critically unwell all their adult life. I see how pain in particular is a demon to the human soul and it can twist your perspective.
Maybe seeing how my Dad has tried to lift himself up and very much struggled made me not give in and let history repeat but fight and strive to change things. I don't mean to disrespect or belittle anyone who has major struggles and battles with anxiety or depression associated with IBD. I am merely sharing my own experiences and outlook.
Could it be as simple as luck, genetic make and situation that makes us the people we are in response to our mental health? What I will add is how especially the last 10 years I have seen more available to help combat these issues rather than just the use of anti-depression drugs. Hopefully our government and NHS are recognising the needs to try other avenues to help people in the pursuit of their wellbeing. I have been fortunate to access, home help, group counselling (mindfulness course) 1-1 counselling, and sure start a charity that assist young families.
- Heather Thomas
Not really although I do feel more vulnerable about going out and I’m way too nervous to go out where's there's crowds i.e a concert.
- Brenda Meakin
I suffered from anxiety, social anxiety & mild depression before I was diagnosed with Crohn’s Disease. They have worsened & become more noticeable since my diagnoses. Some days are worse than others. I have started attending programmes to help me deal with these issues, however many of the people running these programmes believe that my illness is making these issues worse & that I have yet to come to terms with my illness.
- Becka McKenna
I didn't realise that I had depression at first, I thought I was just tired from being so sick for so long. I spent 9 consecutive months in two different hospitals, had several surgeries, procedures, and pumped so full of drugs I didn't know which way was up - so I thought it was only normal to be a little run down after it all... I spent a further 12 months recovering with a large open wound and three fistula's in my abdomen - as well as being on TPN via a broviac line which I had learned to look after myself at home. I stopped TPN in August, and forced myself to go to University that following September... In hindsight, I think this decision saved me from spiralling into a much darker place as it gave me so much distraction... I was still tending my wound, still flushing my line, and still very much governed by "being ill".
When I graduated in 2008, I felt an overwhelming surge of sadness... that was it 5 years of hard work, and for what? Being told that the chances of my working in a field as demanding as Translation or Interpereting were slim to none, and in fact, I was to be signed off work, pretty much FOR LIFE .... Massive blow for someone who's dream was to travel the world ...
I was "offically" diagnosed with depression in 2008/9 although, having endured periods of crippling lows during uni, fearful of what my future would hold, I knew I'd been suffering a while. So, more pills to add to the barrel load I was already taking daily, and see if they helped.... FFWD seven years later, I've had several medication changes, gone through several counsellors - who just couldn't cope with how hopeless and depressed I was... one even told me she felt like she took her own daily routine for granted talking to me, and that she'd appreciate the little things more now... GEE THANKS, way to make me feel even shittier lady!
I have developed a panic/anxiety disorder, as the older I get, and realise there is no miracle cure, there is no magic pill to take to make me feel better, the more hopeless I feel - I can't ever have children, so what man would want me? I live with this illness every single day, is it really fair to ask someone else to live with it too. I have dark thoughts regularly, and the only thing keeping me from doing something silly is knowing I couldn't do that to my mum... I live with her, and she looks after me during the low points, and during bad cases of flares and anaemia... I also have a cat and three geckos, I couldn't leave them either! Ain’t nobody can look after them like I can!!
Some days I have a little hope, hope for a cure, hope that I'll stop needing regular iron infusions, and blood transfusions - stop needing blood tests, heart check-ups, x-rays and colonoscopies ... but, the reality is we are so very far from any sort of cure being found, so I find myself thinking, well, I just have to learn to cope as best I can, live this half-life, of not knowing how I'll feel, or how physically able to do any given thing I will be from one day to the next. No future planning, in case I catch something, or my blood drops, or my Crohn's flares AGAIN, I'm so tired of cancelling things, tired of seeing so called friends filter out as I'm too sick to do all the fun stuff all the time, and I am so sick of falling in love, and having my heart broken because - they didn't realise how bad this thing would be, how anxious, paranoid and depressed this thing makes me...
Seems I’m better off becoming the crazy cat lady. Guess that's not so bad after all
- Lowri Sian
I think there has definitely been times when I have been so depressed that I had no fight left, especially at the beginning. There are good days and bad days with this illness and this definitely affects my moods.
- Lorraine Hepburn
Yes I do, I'm currently taking Prozac to counter my feelings of loss and depression since I have a lifelong Ileostomy that won't be able to be reversed. I really struggle at the moment dealing with the thought of having it daily but I think without this group I'd be in a far worse position than I am, I'm just so thankful to have a group of people that can totally sympathise and tell you you're not going crazy thinking these sad thoughts and that a lot of people go through it too. I was hoping to be off my antidepressants soon but my brother is unwell at the moment with cancer and the stress of both him and IBD and my recent complications from getting my Ileostomy are making me reconsider my choice to stop them soon.
- Jennifer Connel Mcgregor
I do struggle drastically with mental health with my condition. But as my consultant said when I finally broke down and told him I wasn't coping mentally 'I would be more worried if you weren’t suffering mentally and emotionally with what you have been through the last few years'. Anxiety is a big part of my daily life and I often worry about leaving the house or going to new places. Toilet access is a big worry for me, with regular accidents, I need to plan my day well to try and reduce my anxiety. I also find myself cancelling plans last minute as I am too conscious about people noticing me disappearing every two minutes to the loo if I'm having a bad day.
- Sarah Akers
When I was first diagnosed I would have days when I cried and asked the question why me? This could have been down to the Prednisone as I would get very angry too. I have my low days, usually when my brain and body are too fatigued to do what I want. Nothing major but if I didn't have Crohn's disease would I feel like this?
- Stephen Gomm
Yes I do depression, some days I'm ready to face the world, others I withdraw myself from it!
- Gemma Willingham
That was very emotional to read. It’s so easy for me to relate to so much that has been said and I feel that parts of Lowri’s in particular could have been written by me.
Thank you to everyone who has taken the time to answer the questions. It’s been great to see how open and honest everyone has been!
It is worth noting that if you’re feeling distressed, depressed, anxious and are worried that something is not quite right the please do contact a GP.
Mental health charity mind have a lot of resources that may help and there is also a free online CBT (Cognitive behavioural Therapy) course here that you can do online which is also recommended by mind. Please don’t replace medical intervention with this course!
Goodbye for now! Until tomorrow when we will ask ‘Has IBDeffected your relationships with family and friends?’