What people with IBD should know

I am often asked, “What would you tell someone recently diagnosed with IBD?” So, this is what I think you should know! Look out for clickable links in this blog, leading to more detailed information! For many, a definitive diagnosis is a massive relief after a long period of being unwell. This does not mean that acceptance is easy, after all, you have just been diagnosed with a chronic disease which has no cure. Do NOT panic, we’ve got this, life is not over! It is worth pointing out that no two IBD patients’ lives are the same. The disease does not always manifest in the same way, and the fact that a treatment works for one person does not mean it will work for another. This makes IBD notoriously difficult to treat. That said, some IBD patients may have one flare, find the right medication straight away and never have another, and that is fantastic! For the rest of us, being diagnosed with Crohn’s Disease or Ulcerative Colitis may mean some lifestyle changes and som

Has your outlook on life /priorities changed since being diagnosed with IBD? Blogs in celebration of World IBD Day

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.

Blog 5

Some people go through life with nothing going dramatically wrong. They make a drama out of a row with their parents because they’re untidy around the house because that’s the most distressing thing that has happened to them. I am not in any way belittling their problems and how they affect them and how they feel about it because they don’t know any different. 
I believe you could ask me a question today and get different response if you asked me the same question in a year, next week, tomorrow, depending on what has happened in between. Opinions are formed by experiences and experiences come from life. What your life throws at you will be the basis of your opinions, the foundations so to speak. That is not to say that the people who have had the same experiences as me will end up with the same opinions as me because that’s not necessarily true. Your personality and your disposition will play a part in building your opinions on the foundations and your personality and disposition will be dependent on both external and internal factors. We could have the whole Nature vs Nurture debate but let’s just say for arguments (and this blogs) sake that we all agree that both have a massive impact on shaping ones personality.
For example, people that have been brought up in a family that are loving, comforting or wrap their children in cotton wool will be used to that from people, therefore when they’re poorly and their friends and partners want to look after them then that’s fine, they’re used to it and have probably even come to expect it, but then there’s people like me that have never been in a very tactile environment so when people want to look after me it evokes feelings of discomfort.
You can put a group of people in exactly the same shitty situation and depending on their nature, some will run and hide and pretend it isn’t happening, some will be so completely overwhelmed and out of their depth that they feel anxious or angry, for some this will be the reason that they have a substance abuse problem, some will curl up and cry and just pray it goes away, some will slap on their war paint, pick up their shield and go charging in to battle. You might start like one of these and end up somewhere completely different! It is impossible to judge how a person is going to react to a given situation; the only way that anyone can deal with it will be in whatever way they know how.
People that have lived through nothing probably haven’t learnt as much, probably aren’t as wise and probably haven’t felt the need to sit and consider their priorities. Some may consider the people that haven’t lived through hardship to be lucky bastards. I do not, I feel lucky because I have learnt so much about life, the world, people and myself.
My response:
Just the other day my dad said to me “You get to a certain age and you just stop giving a shit about the small unimportant stuff, it’s just not worth it”. I declared that I don’t think it’s anything to do with age, I think it depends on your life and what you have been through.
I hate stress, if I can avoid it I will because I know it makes me even more poorly so stressing about things that aren’t even important in the grand scheme of things is really not worth it.
I have never really been a soft person but living with IBD for 8 years has made me even tougher. Don’t get me wrong, I am softie at heart when it comes to things and people that matter but I don’t waste it on people that don’t. If someone is boring me I will turn around and walk away and if someone is being ridiculous I will tell them. If someone fucks me over they don’t get the opportunity to do it again. Forgive and forget? I won’t forgive but I won’t dwell on it either because I won’t give someone else the power to make me angry. It’s far too strong an emotion to waste, and the forgetting part comes with time and eventually I will forget the person that’s not worth reserving an area in my memory bank for.
I really don’t have any sympathy for people that take a day off work for a cold. What I do understand is that pain is relative and someone might have belly ache or period pains that are horrific to them and even though on a pain scale they wouldn't be anywhere near the pain I have managed to exist through, the pain to them is still the worst pain that they have ever felt so it’s hard for them. Even I can piss and whine because I’ve got toothache – that shit hurts!
My outlook on life has changed dramatically. I have written in blogs before how grateful I am that I’m poorly and what it has taught me. Obviously whilst I’m rolling around in pain I am not grateful for being poorly but I’m grateful for the lessons and I can honestly say that even if I could turn the clock back, I wouldn’t change a thing because everything that has happened leading up to this point in my life is what has made me who I am right now and I like me.
I was on a downward spiral before I was diagnosed with IBD, I drank too much, took drugs too much and generally didn’t give a fuck enough.
Life is too short to piss around not doing what you want to do or doing things that you don’t want to.
I have days of course, sometimes weeks if I’m in a lot of pain and not sleeping where I’m angry and bitter.
I don’t want to waste my time listening to other people’s pointless dramas and there’s nothing I appreciate more than having some ‘me time’ and just chilling in my PJ’s with the dogs and reading a book or watching movies.
A few blogs about how IBD has improved my outlook on life are here;

Over 3 years ago, my now boss asked me in my interview where I wanted to be in 1 year / 5 years’ time and all I could tell her was that I want to be happy. What is more important than that? And what leads to happiness changes as life and priorities do.
I could sit and contemplate why I am here, what my purpose is, what life’s all about, but I’ll never figure it out. It does bring back a memory of poem I wrote, years before I was ill though, but the only line I can remember is the last two;
When it comes to the end, if I find out that life was a test,
At least I can say I did it, and I tried my bloody best.

Your responses:
My outlook on life has changed so much since my diagnosis although it all happened so quickly for me. From having no symptoms or problems at all to having a bowel perforation and almost losing my life all in 2 weeks certainly does make you think and take a look at what you are doing. I had a sub total colectomy and stoma formation in October 2008 this was a very big shock to me as I was always perfectly healthy previous to those 2 weeks. 5 days later I was taken back to surgery due to a twisted bowel. Living with a stoma I thought that my life was over I was only 24 years old and a single mother of 2 but finding out I would be eligible for a reversal soon had me thinking more positively. I had reversal surgery in June 2009. And from then on I’ve had very few problems. April of 2010 I decided to seize the day and I left my hometown of Birmingham and moved 160 miles away to the Isle of Wight and have lived here ever since - I came on my own with my 2 children and started a new life. Would I have had the courage to do this if I had not been so close to losing my life due to Crohn's? No I don't think I would have.
-              Laura Pengelly

Since being told I had IBD, my outlook on life has changed dramatically. Before I was money motivated and never had a day off sick and went out whenever I wanted, brought anything, went on holidays, I didn't have a care in the world, didn't have to know where the toilets were beforehand either and I ate whatever I wanted.
Every morning when I wake up I take 6-10 pills, (4 for diarrhea, 2 for spasms, 1 for anti-sickness, 1 for anxiety, 2 for pain), then 6 pills every 4 hours, (3 anti-diarrhea, 1 for spasms, 2 for pain) and even they don't always work. I go into work as and when I can, and I have at least a week off most months, I've receiving numerous warnings for my attendance. I have a 4 year old now and I can't take him to the park as and when I want to, or take him anywhere else. So I feel extremely guilty that he doesn't do what most children do. If I do want to go out it's got to be planned a few days in advance, so I can get my body more ready and it's a last minute definite decision. If I’m going somewhere new I have to research the area for toilets. If there are none around I start to panic which can make me worse. On major flares I've been known to OD on pills just so that I can do stuff in the house. I also have to be very careful with what I eat, and I tend to eat bland foods when I know I'm due to go out etc. All in all IBD has ruined me completely.
-              Jennie Maccoll

I've realised more about my own limitations since being diagnosed. I had pneumonia because of it and was severely ill and it made me realise that my health is more important than anything. I've always been a bit of a control freak, and it's the one aspect of my life that I can't control, which I really struggled with. As part of that I've had to cut back on organising my life as it stressed me out too much which was affecting me. My outlook has very much become based around whether I will okay to do something, not how much I WANT to do it. I've come to accept that sometimes I just need to have days where I do nothing in order to recover, which I really hate!!
-              Claire Farrow

Being diagnosed with IBD has changed my outlook on life, it makes me appreciate the good days more because who knows when there could be a bad day. It has also changed my priorities because I now know what I can and can't do and where my limitations lie so I know when I have to sacrifice being able to do some things to be able to do others.
-              Jane Goben

100%! Less than a year after being diagnosed I even quit my job as a hairdresser, not just because it was difficult and tiring but because it made me realise there was more to life, especially as I didn't even want to be a hairdresser. So I did a bit of psychology, and then moved abroad to enjoy my life once I was "well". And I refuse to waste my time on people that create drama in their life.
My Main priority in life, not just for myself but the people around me, is happiness. I had a lot of years robbed off me, the years that are meant to be easy going and care free. I lost my freedom, my dignity, friendships and myself! So when I eventually got my life back and got well again I vowed I'd never let that happen to me again, even if I get poorly again! When I was younger I never really knew what I wanted from life, I just knew I was a career girl and I  kid myself that that would be what made me happy. But once I got poorly my whole prospective on life changed. A career didn't matter to me anymore. I just wanted to be happy. So I cut out the people that brought me drama, looking back I probably cut too many people off, but at the time it felt right. I went back to enjoying my life, and most of all, I started telling my family I loved them, which I never did before! Going from being a career girl, my happiness and priorities are family. My family and creating a family. So now I feel like I have the right prospective on life and I'm finally Truely happy. And with that happiness it's brought me a loving partner, and my own home - all I ever truly wanted.
-              Danielle Emma Gooch

My life has definitely changed due to having Crohn's. I had to stop working and my dream of going to college has ended because I'm too sick. So yes things definitely change.
-              Kelly Chamberlain-Downs

My priorities have changed since my diagnosis, I used to be a carer for the elderly and now I can't do that job my doctor and consultant have said that I should look for something else but signed me off for 2 yrs, I have to plan my day rather than just going out. I've got to make sure that I have access to a toilet at all times and I have to watch what I eat.
-              Louise Rutherford

Since being diagnosed with IBD I wouldn't say my outlook on life or my priorities have changed, I've just had to change the way I do things day to day, to accommodate it. My outlook on life is if anything more positive. I realise now more than ever that health is so important and life is short, this illness shouldn't hold us back. My dreams and aspirations haven't changed like travelling or owning my own business, but the way I do them will, for example I can't have live vaccinations for exotic country's so will have to overcome problems like that.
-              Kate Keen

Definitely! Especially since nearly dying after a perforated bowel last year. I am less tolerant to peoples, excuse the language, bullshit and if I want to do something unless there’s some major reason that I can't then I will as you don't know if the chance will get taken away from you.
-              AJ Mooney

My outlook and priorities have changed considerably since being diagnosed with IBD. It totally gives you a new perspective on life (in my opinion) and makes you realise truly what is important and what is not in life. Before being diagnosed with IBD, I suffered other physical conditions as well as ongoing mental health issues that continue now, and to be quite honest I think if I had not been diagnosed with IBD I would have drank myself into an early grave. I was very reckless in my behaviour, would rather go out and binge drink every night and get entirely wasted and destroy my body from the inside out. Being diagnosed with IBD has changed this completely. I can have one pint of lager and my stomach be in agony, and if I drink heavily I am in bed for a week and suffering, so it is just not worth it. It has made me appreciate the little things in life, like sunny days, and good, sober times with friends and family. It has made me more focused on experiences and good times rather than material possessions (mainly because it has removed my ability to work so I have zero money all the time!) My outlook on life wasn’t very great before, and it still isn’t massively good now but I would like to think that despite the trials and tribulations of this disease, overall I am a more positive and strong person because of it. Sometimes I dwell on things and I think, what’s the point? Am I just going to be like this forever? No working, barely any social life, no potential or future? And that scares me and makes me wonder what the point in being here at all is if I am just going to be like this forever, as currently I am not living, just existing. However, some days I feel raring to go and ready to fight this disease and not let it consume me and take over my life, determined to make the most of what I have got rather than focusing on what I don’t have and can’t do. It has also made me realise who my true friends are, I have lost a lot of friends since being diagnosed due to the fact I don’t go out drinking anymore and don’t have the energy to socialise a lot, so I have lost many people. But I am glad of this in a way, because the friends I DO have are amazing and stick by me no matter what, they don’t care if I don’t see them for weeks because I am ill, they will come see me if I’m too poorly and send me messages to make sure that I am okay. I have also made more friends due to this condition because I have met other sufferers who understand what I go through, and I know some of them will be friends for life.
So to answer the question, yes, my outlook on life and priorities have changed incredibly since being diagnosed with IBD. In a negative way but also in a positive way. I worry about my future and about what potential there is for me, but at the same time I feel stronger than I have ever felt before in my life and I know with the people I have around me I can continue to fight and find a cure, and make the most of the life I have got as I can’t change my illness but I can do my best to change my circumstances. It also saved my life in a way, due to calming my social life down!!
-              Abby Mae Matthews

If you had asked me this question when I got diagnosed I would have said no. For the first 8 months of diagnosis it was as if I didn’t really have Crohn’s to be honest. I had occasional stomach ache but I was just taking Pentasa for it and nothing else. And even then I didn’t really respect the disease and was very bad at even taking my Pentasa, sometimes not taking my medicine for over a week. It was at the 8 month mark where I went into A+E with my Crohn’s suffering from abscesses which had to be drained and ultimately led to them discovering I had two very complex fistulas, an issue with my right kidney and extreme inflammation in my bowel.
I spent the next three weeks in hospital with two surgeries, my 19th birthday and had to spend the next 2 months on a liquid diet, no solid food at all as my insides were that damaged. This is when I realised how bad Crohn’s can get unmonitored and when I don’t take care of myself sufficiently. I had to leave university and move back home I dropped down to 55kg (roughly 7.5stone) when I am at a height of 6ft3. I was extremely poorly and ended up having to drop out of uni completely. This is when I started becoming severely depressed, I hadn’t got any friends around me, I wasn’t getting out the house for studies or work and suicidal thoughts had started.
I didn’t tell my family about the depression for probably close to a year when I finally broke down in front of my parents, it all came out, even told them about the suicidal thoughts I was experiencing. The first time I started noticing suicidal thoughts was when things like driving in the car with my family and all of a sudden a thought would pop up in my head would think ‘I hope we crash’ and would imagine a crash. This became progressively worse and one time I seriously considered committing when at the train station watching the trains go by really fast. I was extremely scared and I didn’t really know why I was having these thoughts, I didn’t want to be having them, it was a very dark and strange period in my life. After letting my family know I was given all the support you could ask for, they were helping me with my everyday life and issues, trying to help wherever they could. My IBD team organised for me to see a psychologist and I started having CBT (cognitive behavioural therapy). This was summer 2014, where I first thought maybe I can do this maybe I can beat this, as I was still confused as to why I was having these problems. This is when I realised my family are really there for me, especially my sisters. I was slowly improving but I realised the CBT wasn’t going to fully cure me and I started holding things in again.
This past month (april 2015) has also been an extremely tough time for me. Suicidal thoughts had started coming back and I began to feel worthless to those around me and again I had a breakdown and phoned my sister in tears. I just wanted my pain to go away and for those around me I didn’t want to hurt anyone any longer. But this time when they showed they cared and I spent the next few hours on the phone to my sister, and the next few weeks thinking about everything that has happened I had a sudden realisation. I realised that I don’t want to die and that I never really did. I was just in a dark place and was looking to extreme measures to end my pain, mentally and physically. So it has been a huge breakthrough. So to put it in short, at first it made me feel like the world was cruel and that I didn’t want to go on anymore, but it has taught me that people are there for me and that I actually want a happy future for myself. By all means I haven't beaten my depression, but I think I can say I have beaten any future suicidal thoughts. So here’s to a happy future!
-              Finlay Hards

Even though having UC 11 years, I'm still learning a lot as I go along. Hearing other people's stories of how IBD has affected them has made me think of how strong we really are. People have had surgery and they still do everyday things. When we are pushed to breaking point and we want to give up, there's that little voice telling you that you can do it, life goes on and it can be so hard and knock you down.
I’ve had moments like that and I didn't want to do anything or go anywhere. This illness was getting to me, days even now it does still. But I won't let it beat me, I have to get on with my life as "normal" as I possibly can. It's ok to be angry and upset. This illness will not win, it doesn't define who I am. 
–             Lisa Cummins


My outlook has changed, I cling on to the good days and try do what I can to compensate for the bad days, I also spoil my niece & nephew as its affected them too, I used to be the mad, crazy auntie and feel guilty on the days I can't!
-              Gemma Willingham

So, IBD huh? Not just a toilet disease.
It’s a whole life, creating of scars, changing of priorities, taking away your dignity, giving you strength, finding you courage, making you brave, and changing your outlook on your entire life disease. Maybe we should rename it?

I relate to Abby’s post a lot, it sounds like we were on the same slippery slope before we were ‘rescued’ by IBD.
I also relate heavily to Fin’s, - the ‘I hope we crash’ thoughts – I’ve been there, and the only person that I’d ever admitted it to was the GP who then referred me on to a counsellor.

You’ve all been very brave and I can’t thank you enough for your contributions and openness.

Best be off! See you tomorrow for ‘How, if at all has IBDchanged your eating habits?

Go back to blog 4 covering dating and relationships.