Monday, 18 May 2015

Has #GetYourBellyOut impacted on you personally? Blog series in celebration of World IBD Day - raising awareness of Inflammatory Bowel Disease

This week, to celebrate World IBD Day and in aid of raising awareness of IBD and how it affects sufferers not just physically but mentally too, I have released a series of blogs over 7 consecutive days, with contributions from #GetYourBellyOut supporters.

Blog 7

~*~*~* HAPPY WORLD IBD DAY *~*~*~


The #GetYourBellyOut campaign has been raising awareness of Crohn’s Disease and Ulcerative Colitis, more commonly known as Inflammatory Bowel Disease (IBD) for the last 14 months. Four women joined forces and poked and prodded at the IBD community until they got a reaction.


In the beginning the days were long and the nights were longer. We were constantly pushing our campaign message and willing the IBD community to find its voice. The four of us were united by one thing – a passion to break the stigma of IBD. To crush the misconception that IBD is just a tummy ache and the misunderstanding of the term which often leads people to confuse the disease with IBS!
The campaign became much more than just raising awareness.
In the past 14 months we have;

•             Raised over £30,000 for National Charity Crohn’s and Colitis UK
•             Launched the #GetYourBellyOut website
•             Launched branded, awareness raising merchandise
•             Had campaign and awareness posters distributed to hospital and GP waiting rooms nationally
•             Gained tons of media coverage
•             Supported Crohn’s and Colitis UK’s online campaigns highlighting issues such as #FatigueInIBD
•             Raised awareness with branded social media logo’s and headers
•             Created a Facebook group supporting over 3,000 members
•             Set up a Facebook page which now has over 12,000 supporters
•             Taken Twitter by storm on many occasions during the aptly named Twitter takeovers
•             Celebrated our Birthday with a big sparkly #GetYourBellyOut ball

#GetYourBellyOut began with one main aim - to raise awareness of IBD, but to its loyal supporters it has become much more than that. #GetYourBellyOut has created not just a community but a family that help each other through bad days and build confidence in one another to talk about their disease and feel better about their body image.


My response:
So who wants to know the bitter truth about how and why #GetYourBellyOut began? Of course the first belly was tweeted in a bid to raise awareness but the reason I was aiming to raise awareness?

I felt like I had been so ill for such a long time. Obviously in reality I have been ill since August 2007 but this was the longest and most draining flare yet.
The prednisone had stopped me sleeping, made me depressed and ugly. I couldn’t wean off them as the symptoms would return. The pain had stopped me eating and sleeping.  The pain meds have stopped me having the capacity to achieve anything remotely productive and I was at the end of my tether.
The night’s when I would lay awake, contemplating how unhappy I was, feeling like no one understood and asking myself the age old question ‘why me?’ were the only times that I would really open up about my disease, taking to Twitter to chat with other sufferers that I had accumulated by searching ‘Crohn’s’ and ‘Colitis’ and stalking those people who had mentioned them. It was a purely selfish act. I only took to Twitter when I needed help. I was in a bad place, a dark place and I couldn’t allow myself to sit there alone.

Talk about removing my Jpouch and returning to a permanent ostomy had me fearful but I knew we had pretty much exhausted all options. Maybe it was the Prednisone thinking, maybe I was tired of my life or maybe it was a combination of the two, but I had made the decision that when the time came to have the ostomy back, I was leaving this world behind. The thought didn’t scare me, it comforted me. I suppose that’s clinical depression for you.

The #NoMakeupSelfie was trending and whilst of course Cancer charities and fundraising for them is massively important, I resented the fact that the #NoMakeupSelfie claimed to be ‘raising awareness’ of Cancer. I also didn’t see the correlation between cancer and not wearing makeup.
I wanted to raise awareness about a disease that mattered to me, that did need awareness raising of it, so I designed my first ever awareness post with RELEVANT pictures. You can see that post here. Give it a share if you will!
A few days later the first belly picture made it onto Twitter and the rest, as they say, is history.
A previously written blog on how the #GetYourBellyOut campaign started is here.
#GetYourBellyOut saved my life. 
I wrote 'What #GetYourBellyOut has done for me' not even a month after the campaign began. The supporters inspired me with their strength and courage and made me believe in myself and my ability to deal with anything that life chose to throw at me. My ostomy surgery last year was nothing like the first time. I didn’t hate it or me, I felt free and well and never once felt bitter about it.
#GetYourBellyOut evokes emotion in me that I thought didn’t exist. The person that would once freak out at any personal contact can now embrace people. I have actual love and massive respect for some of the bellies, especially the admin of the group who give their all to the campaign and its purpose.
I feel I need to thank every single person that has turned #GetYourBellyOut into a campaign rather than just an idea. You can’t build a campaign without supporters and support us you have!

The #GetYourBellyOut that you see before you is a beautiful and incredible creation - a creation born out of frustration, sadness and anger.

Your responses:
Yes it has had a huge impact on me. To know others go through the same thing. To have the support of others if you need help. To know I am never alone. Without #GetYourBellyOut it would be a lot harder to deal with 
-              Lorna Beeke
****

Wow, gybo has allowed me to meet people from the group who, without fail, have been fabulous. But generally, the group and the community have been fantastic for me. I will now talk about my UC, not just online, but to anyone who wants to know. Everyone is available to talk, at any time, and the support given by individuals to each other is fabulous. I have met people I now count as friends, even though I am very nervous meeting new people. I also talk to a few bellies quite regularly, who I would love to meet, even though they are spread far and wide. Now, I don’t know what I would do without the group, which to me demonstrates how good it is.
-              Ian O’Donnell
****

#getyourbellyout has had a huge impact on me as prior to joining I didn't really know anybody who had Crohn’s. I basically just ignored the fact I had a chronic illness and nobody but my family knew about it. I never felt comfortable discussing elements of the illness with anybody and was also very ashamed of the scars on my tummy as to me they looked hideous. To be able to exchange stories with others who knew exactly what I was going through made it all that much easier to bear.
-              Laura Pengally
****

This group has helped me in so many ways, and I'm grateful to the admin's that founded this group.
-              Jennie Maccoll
****

I really enjoy that there are other people in the same situation as me, people that understand when you are having a crap day due to fatigue or tummy pain. I’m really lucky that my family are pretty understanding, but it's not the same. It's really good to see people who have been really poorly, recovering and doing well, it gives me a bit of confidence that I can do the same. It gives me strength to carry on, and makes me realise that I'm really lucky sometimes. It's such a great support network, and it's lovely to see how everyone clubs together to support people. I really enjoy being part of the group, and I'm really glad I found it!
-              Claire Farrow
****

Most definitely! GYBO has given me the opportunity to learn so much more about the disease that controls my life! I've made some lifelong friends and learnt so much information that is helping build and structure my life to make it my life again!
-              Joey Pullen


My goal is to raise awareness for IBD and I like the huge support and the fact the main aim of #Getyourbellyout is raising awareness, so you drive me even more to do that. Plus obviously meeting soo many amazing people and now getting to meet them in person.
-              Danielle Emma Gooch
****

I've been in GYBO for about 6 months. I've been diagnosed with Crohn’s Disease for almost 20 years and I'm 37. GYBO is by far the most positive, fun loving and helpful IBD group out there. I've made numerous friends which I've talked with and helped and they have helped me. And even though we are half a world away (the group being in England and I am in Chicago) the connection is clear and true, IBD effects us and we are one. I love talking with the group and even plan on traveling to go to the next ball. I would love to meet all of the group and get to know them better.
-              Brian Jones
****

The #GetYourBellyOut campaign has changed my life in so many ways. Before I stumbled across it on Twitter, I was very much lost and convinced I was going to spend my life alone with this disease. I didn't know much about IBD, I'd never heard of it until I was diagnosed. But this amazing group appeared, and it was like the light at the end of this never ending tunnel. Thanks to the founders, the admin, and every member, I have become stronger. I am more confident. I am beating this disease. And most of all, I'm happy. I've not just gained knowledge, or strength, but I've gained friends for life. And the best part? I've gained a family that will love you and be there until the very end. Thank you so much.
-              Shayne Grant
****

Gybo has affected me and impacted me loads as it has given me loads of support as I don't know anyone with the same illness as me in Northern Ireland...
-              Charlotte Lewsley
****

The #getyourbellyout group had been a fantastic support group in which I feel safe enough to post comments and know I will not be judged. Although I haven't formed any friendships from the group which is a shame I do know that any post will be answered in a supportive manner and all members promote great understanding towards others.
-              Hannah Tingley
****

Oh man, before #GYBO, I was so different! I was much more timid and ashamed of my illness. Finishing college and starting a career, one doesn't want to seem different from their peers, or have their boss think any less of their capabilities, so I did far too much hiding. When I was too sick for social gatherings, I felt ashamed. The head games drove me wild. Am I really this sick? Am I being lazy? Am I just a huge baby that needs to get over it? Never mind I had already undergone 3 surgeries, nearly died from a bowel leak, had a temporary ostomy and multiple complications. All of these extreme health issues occurring between 18 and 25 made me feel stranded on an island, and I had no idea how to get off. Then last year, I discovered #GYBO. I've failed to click with other groups in the past, and even though I'm an American southern gal, I felt I could ask ANYTHING on the site and get help STAT. Random new symptoms? Ask away. Need to vent or spread some cheer by dancing like a moron? Go for it! Through the group I made some close friends that I can't wait to meet, and now I don't even feel the need to post every little mind game Crohn's throws my way as I can just ask them privately. This doesn't take me away from the group (because trust me the group doesn't want to hear every. little. thing!), but rather I have a tight-knit support network that I wouldn't have found without this group, plus this group to go to, laugh with, and share funny toilet selfies. Now I'm much more open about my illness, more confident, and I don't care what my boss thinks. Turns out they are quite supportive at work, too. You'd be surprised what can happen if you open up!
-              Kathrine Zahm
****

#GYBO has positively impacted on my life, not just mine but my family's too.. I've became more open chatting and supporting other sore/broken bellies. People who are or who have been through the same suffering as I have makes me feel not as isolated and alone with this disease and all the lovely symptoms along the way.
I'm still always learning too, even after 24 years of Crohns! I love reading others achievements and celebrations because this shows us that life does go on. We offer support with others fears and operations and watch them as they come through the other side, if they struggle we're here too..
We stick together through thick and thin through good times and bad.
I can't put half the stuff I talk openly about on my normal FB page. I feel safe to do it in #GYBO though Sahara Thankyou xxxxxxxxxx
-              Dimple Smiler


Up until this time last year, only a select few friends and obviously family members knew that I suffered with Crohn’s disease and all its associated ‘fun’, even though I was diagnosed at 16 (I’m now 28), and I only knew of 2 other people with Crohn’s. The campaign has not only made me more comfortable in telling more people about my condition, but it’s proved an invaluable lifeline to me in that I’m able to ask questions of people with the same/similar experiences and not feel ashamed about my condition. The network of friends that I’ve gained from the group will stay with me, and I’m so grateful to Gem, Sahara, Victoria and Lorna for creating such an amazing support network that I cherish so much! Not a day goes by when I’m not on the Facebook group!
I’ve taken to Twitter and Facebook and posted as much about IBD as possible to help raise awareness, and in doing so it’s made people actually stop and think, especially if I have to cancel plans last minute or am just feeling generally under the weather. I’ve definitely opened up to people about IBD thanks to #GetYourBellyOut, and they come to me with questions, which just goes to show that the campaign is succeeding in its main aim – raising awareness!
-              Cat Lodge
****

#Getyourbellyout has made a real impact on me, by being able to chat to people on what's worrying me as I don’t know anyone with IBD, its really helpful! And supportive, I'm so glad to be a part of it, gives me the feeling that I'm not actually alone after all:) its amazing.
-              Jaz Bingham
****

GYBO has been amazing to be part of, I've met and connected with people going through exactly what I am who have given me tips to battle the fatigue and pain. The group is full of inspiring and brave people who help me push myself day to day and pick me up when I'm at my lowest. The amazing fundraising and awareness you guys do I'm sure will help us be that but closer to a cure.
-              Kate Keen
****

When I was diagnosed, I had no information but a website address (CCUK). Of course there was a plethora of information on there about IBD but I also wanted to speak with others and listen to experiences and stories from those living it now. I was scared when I read it was lifelong with no cure but once I got more involved in the group it helped me to understand that although I would have to learn many things, I knew I wasn't alone doing it. I had people who could empathise, sympathise, offer help and hugs and also a kick up the ass wen needed! Who knows how I would have coped with it all had the Ladies not set the group up. For that, I'm eternally appreciative.
-              Nicola Bullock
****

Yes it sure has! It has made me feel that I am not alone and I have met some incredible people through it. I genuinely do not think the founders (Sahara, Lorna, Gem and Victoria) realise the impact of what they have done so thank you all!
-              AJ Mooney
****

I’m unsure if I am going to make it through this question without welling up or crying, because it is so hard to put in to words how much #GetYourBellyOut has impacted me personally and how amazing it has been for me. When I first got diagnosed, I didn’t know anybody with IBD and I felt so scared and alone. I had supportive people around me, but they couldn’t truly understand. I was terrified of the thought of needing a Stoma at some point in my life, and even said I would rather die than have one. I had nobody to turn to for support and advice about whether my symptoms were normal and what I should be expecting, and it was terrifying. When I stumbled across the #GetYourBellyOut campaign, I was absolutely amazed by how incredible it seemed and the fact that people were proud of their bellies, scars, stomas, everything and wanted to shout and tell the world that they were still beautiful regardless! Looking through the posts of the gorgeous tummies and reading the experiences of other people gave me so much hope and made me feel like IBD didn’t have to be totally negative. As I saw more and more people join and upload pictures of their bellies, I saw more and more bags being shown and people talking about them, and all I could feel was inspiration. It made me realise that having a bag is much more preferable to dying, and if I ever need one I will be SO proud of it, and I will show it to whoever lets me! These people still looked absolutely beautiful and handsome, and their bags had given them their life back. I finally didn’t feel like I would rather die than have a bag, I felt honoured to be a part of such an incredible movement. Not only that, but I have made some friends for life. I have met so many people from the group now thanks to meets and the incredible #GetYourBellyOut 1st Birthday Ball, and I love them like they are my own family. Even those I haven’t met yet but communicate with everyday, they feel like people I have known all my life. I know that there is ALWAYS going to be someone there for me if I need them, people are only a message away, and I hope I do the same for them. The kindness and generosity of the group astounds me, it really is like one big family and I really cannot put it into words how much it means to me.
#GetYourBellyOut has shown me that IBD can have positives (new friends and amazing times) and that we should be proud of what we look like and who we are. I could never thank the four founders enough, Sahara, Lorna, Gem and Victoria I owe you all so much for what you’ve done for me. The campaign has made me stronger and less scared of what may happen in the future with my IBD, as I know that whatever happens I will have 2000+ people behind me supporting me the whole way.
-              Abby Mae Matthews
****

This is an easy one. Yes most definitely! Without certain people I would have been left wondering in a wilderness of darkness. Also as I'm currently fighting to get some mental health care being able to talk to people that know what I'm going through helps immensely.
-              Dave Carden


#GetYourBellyOut has helped me massively since I found it 2 months ago. It is very reassuring that I’m not the only one that feels the way I do & that there is other people out there who know & understand how I feel. It is amazing because if I ever have any questions about my disease or any unusual symptoms, I can just post the question in #GetYourBellyOut & there is over 3,000 people who can offer advice or support. Everyone in the group is amazing & very supportive despite having their own problems. There is always someone who can help in the group. Even though everyone is a different age, at a different point in their lives & at a different stage of their disease, the support and understanding is better than any I’ve ever experienced before. Family & friends will support you but bellies will inspire you & walk every step with you, no matter how difficult the journey. One of my favourite things about the group is that age doesn’t matter. No one is too young or old to help or support. I can’t thank the founders enough for creating such a wonderful family!
-              Becka McKenna
****

I've made so many friends, I don't feel alone, any questions or when I'm feeling down the bellies are all there helping me/us on our journey. I've gained a family from #GYBO but most of all I've gained a sister in Sahara the one person I only truly open up to
- Gemma Willingham
****

YES!! This group has been a massive lifeline for me, and I don't know where I'd be without it... well, I guess I'd still be here, but I'd probably feel like I was alone suffering, like I used to. It's opened my eyes to a whole new world of people that suffer with IBD, Young, Old, Married, Working, and those, like me, who have never had a "proper job" thanks to my crohn's. I was diagnosed at 19, and aside from the support of my Mum, I have largely dealt with this disease on my own. It's such an isolating disease, as, let's be honest, who wants to talk about poop?!
#GYBO has enabled me to talk about my crohn's freely, and not be ashamed that I feel like I spend half my life on the toilet... in fact #GYBO encourages Toilet Selfies!! I absolutely have to mention the Ball too, I met so many new faces, and made friends that I'm sure I will keep for a lifetime I personally cannot wait for #GYBO's second birthday.
This group has increased my confidence immeasurably, I would NEVER have got my belly out so publicly before, and right now it's displayed proudly as my Profile Picture on FB... I also managed to pluck up the courage to enter the Calendar comp, and scored a place as Miss June! I could have burst with pride! I had so many messages from friends, and friends of friends congratulating me for being so brave... it was pretty overwhelming...
Most of all, this group has taught me to be proud of my scars and battered belly, They're the very reason I'm still breathing! Far better to be like this than leave a pretty corpse!
-              Lowri Sian
****

OMG yes! I have never spoken out about my Crohns and would never have talked about my stoma...GYBO have given me the confidence to love myself and respect my body for fighting to survive. I have made friends for life who just 'get it'. The campaign has helped me restore my faith in the world
-              Cassie Kingswell
****

Simply enough GYBO has had a huge impact on me. It’s given me a place I can rant about anything in my life, not exclusively IBD support though thats what I use it for mostly. It’s given me hope that people who have come through much harder circumstances than me shows that I can do this too. I’ve met lifelong friends on there and people I will always care about. In short I love GYBO and am so thankful for the founders in creating it, I honestly think it was the group that saved my life last summer. It gave me hope.
-              Finlay Hards
****

Yeah the group has definitely changed my personality. Before the group I was a bit quite embarrassed by my illness and didn't want people to know. Now the group has gave me the confidence to share my experience and help inform others.
-              Lorraine Hepburn
****

Basically it has because I was scared to talk about my bag and didn't know anyone else with ibd that I could chat to about it and Ibd on a daily basis with, like I have here, it's made me far more open to talking about having Ibd and now I'm dedicated to raising awareness about it.
-              Jennifer Connel Mcgregor
****

The whole campaign has made me more confident in myself. I have embraced what it stands for. I have never been afraid to talk about IBD if I was asked but now l want to help promote awareness. I want people who are less fortunate than myself to have the care and support they deserve. I want to hug every belly and tell them how beautiful they are. A year ago, I didn't do hugs, can't get enough of them now
-              Stephen Gomm
****

I suffer with Ulcerative Colitis 11 years now, I was diagnosed at just 18. I hadn't heard about this illness ever and I was afraid, even though I had my parents by my side every step of the way. There was nothing much around to help me understand what was going on in my body and I didn't really speak about it. I lost all my confidence. I was 6stone at the start of my illness. My weight was always up and down. I didn't feel comfortable in my own skin.
Before the group came along I was so shy and never spoke about my illness to anyone, I'd hide away.
But since the group I tell everyone about it now and I got my belly out for the first time last year and it was hard at first, but now ive slowly got my confidence back and it's all thanks to the group.
-              Lisa Cummins


To say I am in a bit of pickle after reading these would be an understatement. So much love and so much emotion! I can’t even begin to explain how much the campaign means to me and just helping one person is an achievement in my eyes so to have helped so many is completely overwhelming.
The ball really got me. All of those people in one room because of something I did. Standing on the stage in front of over 200 people and the tears came. That’s not something that ever happens to me. I don’t cry in front of people… EVER and the tears came all night. It felt like family and it felt like home. All of those people laughing and dancing and enjoying each other’s company, you would never have known that this was a party for the ‘incurably sick’ if you were just a passer-by.
I have been suffering massive belly blues ever since.

So I guess I’ll be leaving you now.

Have a fabulous World IBD Day and remember… you are NEVER fighting this battle alone.


~*~* United We Stand *~*~



Go back to blog 6, discussing how IBD affects eating habits.

Has having IBD changed your eating habits? Blog series 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 over 7 consecutive days, with contributions from the IBD community.

Blog 6
~*~*~*~*~

It’s a strange one, eating habits. What really irritates one person can be completely fine for another so I’m interested in seeing the responses for this one. People that don't suffer with IBD often think that they can tell us something which we haven't already thought of... Because of course we just sit on our backside complaining but not making any attempt to fix ourselves, right?

Eat more fruit and vegetables. Drink more water. Detox. 

Fuck you.


My response:
In all fairness there isn’t anything that I can’t eat in the respect that it will bring on a flare, but I pretty much live in a flare anyway. The only thing that I am aware of that brings on flares for me is alcohol so I tend not to drink very often and if I eat too much fibre then I have to remember to take extra loperamide so I don’t crap myself in my sleep. 
If my Pouchitis is active,which is more often than not, fizzy drinks tend to make the gas build it which does hurt but not enough to warrant taking painkillers for.
I dehydrate quickly due to having no colon so if I eat things like bacon or gammon I have to remember I'll need rehydration solution.
I can’t eat a lot in one go so little and often tends to work for me. This also prevents gas building up between meals which ultimately gives me pain so I tend to graze all day long.
I don’t absorb nutrients very well so I tend to crave things my body needs a lot such as salty foods or iron rich ones. You’ll often find me munching on a steak with sweet potato chips. All for the good of my health of course! ;)
Because I don’t digest food fully I have to chew everything properly. I have had two blockages previously and it was enough to make me never want another! I used to hate going out to eat because I would always still be eating way after everyone else has finished but I have got used to it now and the people I eat with have got used to it too. I don’t eat things like stir fry’s anymore because everything needs chewing so well I end up with jaw ache by the end of it. I tend to balance meals by texture rather than nutrition content so if I am having something that takes a lot of chewing it will have to be next to something that doesn’t.
I struggled to eat anything at all as my strictures got progressively worse over a few year period and by the time they were discovered I was put through as an urgent case and was in theatre five days later. It wasn't the IBD itself that has caused the strictures, on the Barium X-Ray of course it wasn’t possible to tell and it was suspected that I had developed Crohn’s Disease since having Jpouch surgery but when they got in there they discovered that the long one was actually twisted intestine and the smaller one was an abscess. It isn't known what caused it but I assume it was scar tissue as the pain was under the old stoma site. The twist had become so narrowed that it was first discovered during endoscopy when the gastro couldn’t get the tiny camera into my small intestine at all and the pain it caused trying resulted in me twatting myself in the face with the gas and air whilst trying to wipe away my tears. It hurt constantly so it didn’t make a difference even going on a purely liquid diet, that had just resulted in me losing a lb a day! The food that caused the worst pain I found was nuts and oats.
Anyway, carry on.
****

My eating habits have changed totally. No longer can I eat reasonably well, everything, and I mean everything I eat is rubbish. I can’t seem to digest peas, they go all the way through me, without fail. And other green veggies make me need the loo within the hour. I used to eat weetabix regularly at breakfast, can’t eat them anymore either.
-              Ian O’Donnell
****

Massively, I was always a healthy eater as a kid and so I really miss being able to eat salad and things now! Last week I was really proud as I managed to eat popcorn for the first time in 9 years! I can’t drink beer, I can't eat fruit with a skin, or sweetcorn. And I miss vegetables so much! Meals are a lot more difficult to plan, as it's so variable day to day. I think my other half struggles sometimes as he will fancy pizza, and I can't eat it if I feel dodgy.
-              Claire Farrow
****

It's changed every eating habit I have, I don't take any food from anyone, if it's not made in front of my I won't have it, because of how severe my Crohn's disease is I can no longer tolerate any form of spices or herbs, so everything I consume is very low flavor but high calorie! I consume about 4000 calories a day to just to stay above 10 stone.
-              Joey Pullen
****

It's changed them a lot. I can't just grab whatever I want from the cupboard and eat it, I can't just go out for a meal and think "hey that looks good, I'll have that". I have to study what is in everything I buy. I can't go to many restaurants as I can't eat most of what's on the menu, and even when I can, I would have to ask them to leave half of it out which can get embarrassing. I used to love food, I used to love to cook. Now I dread meal times as I don't know how my gut is going to react to it. I could have eaten it 100 times over, but this one time could send me into spiraling agony and leave me in bed for days, maybe weeks. Sometimes it doesn't even feel worth eating at all.
-              Shayne Grant
****

IBD has severely altered my eating habits. So much so there is not a lot I can eat now , even after my Ileostomy. If its fruit or veg forget it and wheat based products are a big no no. No red meat, just chicken and fish and even then chicken sometimes doesn’t digest. I have a lot of smoothies to try and get the goodness I used to get from food. Before IBD I used to cook from fresh each day, always meat veg and potatoes or anything healthy.  Now it seems if it’s healthy it doesn’t digest.
-              Jane Killin 
****

It's tragically ironic. During B.C., or Before Crohn's, I loved eating healthy. Cooking is one of my hobbies, and I love all the flavors one can pull from vegetables, fruits, and herbs. Then comes Crohn's, strictures, and a G.I. pointing out that a low-residue diet until I'm under control would suit me better, as fiber bulks the stool making it more difficult to pass. I'm not under control, and scar tissue from previous surgeries create more strictures (narrowing of the intestinal lining), thus putting me in a vicious cycle. I still cook with these ingredients for my family, but I still have to stick to the bland foods on my own plate. People think that IBD means you "watch what you eat" and make sure you "eat healthy" when in fact, it's usually the opposite, depending on the severity of the illness in the patient, as well as where it affects the patient in the digestive tract.                                    
-              Kathrine Zahm
****

I can only eat sum days due to surgical complications.
-              Diane Nugent
****

The only way that IBD has changed my eating habits is by making me more cautious about what I eat and more aware of what's in my food. I am now more aware of what is a total No Go for me but I will also weigh up a situation before I eat something. This disease is depressing enough without is making things worse by us having to be denied foods we crave. Obviously I would avoid a food that would cause a severe complication or reaction but if I wanted something and knew it would give me some discomfort for a short while then yes if I really had to have I would eat it.
-              Nicola Bullock
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IBD has changed my eating habits MASSIVELY. I used to eat whatever I wanted whenever I wanted, mainly junk food because I have a massive sweet tooth. I never had to think twice about what I ate and whether I would need to be near a bathroom straight away, or how it would affect me after eating. I’ve always been a food lover, and there aren’t many foods that I don’t like so I took much pleasure from eating whatever I wanted whenever! Now I have to be so careful. As much as I don’t believe IBD can be treated and controlled purely by diet, I do think diet has a large part to play in my disease. However, it can be so temperamental. One day I can eat something and be fine, the next day I can eat the exact same thing and it HURTS! How is that possible? So I just have to be careful and assess how I am feeling at the time and what food I am eating. I am lucky in the sense that things such as fruit and vegetables don’t really have a massive impact on my IBD, I know a lot of people with this disease cannot tolerate “healthy” food yet get lectured about it which is unfair. Most things I am fairly okay with (touch wood). I was advised by my consultant last year to try the FODMAP diet to try and reduce the pain and bloating I was experiencing associated with my IBD as well as IBS which I suffer too. This scared me as it meant eliminating a lot of food from my diet, and I felt that I wouldn’t enjoy food or be able to eat anything, it made me so depressed. But when I looked at what I could eat, I found there was still quite a lot that I could enjoy, and most supermarkets now have excellent “Free From” sections with lots of yummy food. I did the FODMAP diet for a good few weeks but it isn’t advised long term, and to be fair it did help my symptoms a fair bit. I gradually began reintroducing food into my diet to see what my “triggers” were, and as suspected it was mainly things like spicy food, garlic type things and onions, so I try and avoid them as much as I can (which is hard as I love them! I still treat myself now and again). It depends on my condition too, when I first started Immunosuppressants it put me into “remission” and for the most part I was ok, apart from pain, and could eat and drink what I wanted. The last 5 months however I have been flaring so have been really careful with what I eat. Nausea has been a massive thing for me recently, and anything I eat has been going straight through me so I went onto Complan shakes for a period of time to try and give my bowels a rest. Now my flare is being treated, I am gradually trying to re-introduce solids but still being careful and having food I consider easier to digest. It still hurts and there are still toilet trips but it’s all about trial and error. What works for one person doesn’t work for another, and as said before, one day a food can be fine and the next not! I try not to worry about my diet TOO much, as there’s little enjoyment left in life when you have IBD so food is important for me, and I try not to restrict myself too much. If I’m invited out for a meal, I would make sure I had no plans for the following days so that I could enjoy my meal and not worry about being bedridden or on the toilet for days afterwards. Luckily, my IBD seems to like chocolate and tolerate it which is great for my taste buds but not for losing weight!! As my condition has been “okay” to an extent apart from the last few months, I have managed to absorb nutrients and keep weight on and actually put on weight which is REALLY hard for us with IBD, so I actually have weight to lose but I know a lot of people need to be able to put on weight. They can have some of mine! 
-              Abby Mae Matthews
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I am meant to have a low fibre diet but I find it hard to stick to it i still eat things I shouldn't and I suffer.
-              Vicki Khan
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Hell this is a biggy. B4 colostomy bag this yr, I was lactose intolerant, coeliac, got anaphalaxia with certain fish and was diabetic controlled by diet. I had been on the exclusion diet via dietician at hospital & new what I could/n't eat. I had been diagnosed with sever IBS since aged 15, had 2 major tummy ops, scars breast bone to bikin line and open Nissan fundoplication for reflux disease. this meant not being able to be sick or burp, everything had to go south. Troubles started after this with hernia after incisional hernia repair and bleeding from strictures in the throat. after so many invasive tests - no results - having tried far too many drugs I paid privately. after 6 months of more (some of the same tests) I had high cholesterol and bile acid malabsorbtion and high blood pressure all adding to further stress on my body & health. I finally got a private consultant who mapped everything and I had skipped the net, was a so called medical challenge on every level. I had the colostomy surgery late Feb this yr. I expected to be back at work sooner, but hey ho as the consultant said 3rd time lucky surgery takes 3 x as long to recoup. since my colostomy I find that certain foods pass through me ok, others disrupt my health and I feel ill, others cause blockages - a big fear with the thought of cameras, surgery on yr stoma when it's on yr stomach & not the usual rectum site. I tend to eat smaller meals, & still toilet map as my output is even more fluid that b4. I don't really like to eat out much for fear of accidents, and some times starve myself for events such as meetings or presentations so that I don't use the bathroom quickly. This has a knock on effect of embarassing wind noises to which I hate & often fear being judged, & when it's bad can't leave the house. I get dehydrated often, and have to constantly remind myself to keep rehydrated with isotonic drinks. water is just like - drink a pint, wee a pint. sugars fool the tummy so it stays in longer. Dehydration is a frustration. I find a regular eating time works well. I can't eat after 6.30 pm really or all hell breas loose at different hrs of the night. Functioning as a zombie is tuff on no sleep with explosions, cleaning up, washing etc.
-              Sara Williamson
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My eating habits are up/down, Fortisips, savoury soups, to normal meals to no meals to a feeding tube.
-              Gemma Willingham


It’s a such a hard balance, you’re not well so need all of the nutrition you can get yet the only things that seemed to be able to be processed without discomfort are foods with rubbish vitamin content. At least when you’re eating chicken its high protein which is good for healing but you can’t even make it exciting with herbs or spices which gets boring pretty fast.
Foods which are fibrous or have seeds and skin are often a problem if someone has strictures as well as flaring, it feels like a never ending battle to try and find a balance that works.

I tried a detox once (desperate times call for desperate measures) my theory being that if I could flush all the bad toxins out whilst replacing all the good gut bacteria with the prescribed VSL#3 it might calm my flare. It was a massive fail and I ended up with a lot more pain than I started with! We live and learn!

It’s been an interesting read. Thank you to all contributors! Sorry I clearly feel the need to keep rabbiting on!

Go back to blog 5 which asks if peoples outlook on life changed after being diagnosed with IBD.

Sunday, 17 May 2015

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 over 7 consecutive days, with contributions from the IBD community.

Blog 5
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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.

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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
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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
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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
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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
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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
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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
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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
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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
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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
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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
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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
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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

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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.

Saturday, 16 May 2015

Has IBD made it difficult in terms of dating or sustaining your relationship? Blog series 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 over 7 consecutive days, with contributions from the IBD community.

Blog 4
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Let’s face it, sustaining a relationship is never a walk in the park at the best of times. Everybody has something about themselves that they dislike and there’s always doubt in the back of your mind that other people might not like it either. The more you like someone the more it matters what they think.

At what point do you declare your incurable disease, symptoms, scars, ostomy? How much detail do you go into about your limitations? When do you tell them your story? Your real story that sums up how you felt about what happened and the scars (permanent or mental) that it has left you with?

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My response:
I became very ill very fast. Two weeks sick at home and a week in hospital before having my colon whipped out. My relationship was in the exciting stage of still being very new, just 3 months.
I was horrified / mortified / lots of other ‘fieds’. I had always been the ‘initiator’ of naughtiness (Sorry, TMI) because I was the confident one and all of a sudden I felt disgusting. I told him to leave a few times but he didn’t. We had one of those relationships in which we fell in love fast. It brought us closer together at the time. It may have been what broke us in the end.
The day after my surgery I showed him my new belly. Crying my eyes out at the time of course, he said ‘it’s okay’. He didn’t see it again for months; I didn’t ever wanna take my T-shirt off. The fertility issues caused problems. The surgeries caused problems. My anger at the world (may have been roid rage), my sadness and my refusal to go out and socialise anymore caused problems. His lack of empathy and unwillingness to take care of me when we lived together and I couldn’t even walk down the stairs to feed myself caused problems. His refusal to answer the phone or come home when I needed him caused problems. It was all too much and it became a pretty volatile relationship. The fact that he had been there and understood what had happened made it easier to stay with him because the thought of trying to explain to somebody else felt far too overwhelming. He told me that no one else would ever be able to put up with me and my shit and yes it was said that no one would have me when I was scarred or wearing a bag (whilst in a drunken stupor, but still, it was said all the same). He told me I was horrible and nasty and because of my low confidence I believed it. It was me that had caused his depression and his alcohol addiction and me that had taken away his chance to have children… I now know that’s not true but I didn’t at the time and I felt guilty. I think some of it has stuck with me and even though I didn’t make him act the way he did or make him make the choices he did, my problems were the cause of some of his pain and I hate the thought that I could be the cause of somebody else’s later down the line. That’s why I stayed for so long after the love had gone. He told me that he had been there for me through all my crap so I owed him.
Dating is hard without medical conditions. Take a look at the IBD and dating blog from last year here.
Having said that, the people that are shallow enough to not want you because you’re scarred or have an ostomy are not the kind of people you want to try and build a life with anyway. When I had the surgeries last year my confidence didn’t take a knock. I’ve got this shit and I am bloody fabulous. I’ve endured more than what most people could even imagine. I’ve suffered in ways that I won’t even talk about because it’s too hard and the ostomy released me from the mental and physical pain that I’d been in for years. I felt empowered, I felt healthy and it felt good! I was straight up about the ostomy as soon as anyone took an interest in me and not one person was put off.
The fact that you can’t always go out and do what you would like because of fatigue or pain does limit the opportunities to have a spontaneous day out or even meal. Most of the time, working is enough for one day and the thought of getting dressed and leaving the house again to for a meal rather than just sitting in with a takeaway is tiring in itself. I can’t help but feel that a lot of people would feel held back, or at least ‘locked in’ by me. I’m so independent that the thought of being looked after puts the fear of god in me. I know when people care they want to help and run around after you but I don’t like it. I don’t want the sympathy and the looks of ‘pity’. I just want to be able to do what I want, when I want and not have to feel guilty about it. People even look sad when you tell them that you don’t want their help. There’s just no winning!
I struggle to let people in. I don’t tell ‘my story’ because I don’t want to go back to that place in my head. I can tell the physical side but not the emotional. If I’m sharing then it will have to be with someone that I am damn sure about because it’s not worth the distress of me telling it otherwise.
I just wish I could be with someone and not cause them hurt and worry.


Your responses:
I am lucky as in feel not to inconvenienced in my illness. I had no surgeries. I carry on working and was with my partner before the diagnosis. He tries so hard to be understanding for me and some days will realise I am ill. Other days he doesn’t understand why I get so tired. But he is used to his role of being chief toilet sniffer outer if in a new area and helps as much as he can. As we both don’t really understand the tiredness that can be difficult but I got a good one who tries his best.
-              Lorna Beeke
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No, because I don't let it. I don't just let anyone in my life anymore so if they get as far as that in my life, I know they are worth it. So if they've learnt to accept me and my flaws, then the relationship deserves my everything.
Friendships on the other hand haven't been as easy but that's a different question.
-              Danielle Emma Gooch
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I think that relationships are harder when you’re going through something in general. Having Crohn's  and being in a relationship has to depend on the couple. My relationship is going strong. I have a strong partner. She stands by me in all of this stuff.
-              Kelly Chamberlain-Downs
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Yes, very. When I first met my current partner, I was afraid to tell him that I have Crohn's, but I met him online which made it a little easier. I hadn't met him face to face yet so I just said it outright, which was okay as if he didn't like it I just wouldn't talk to him again. It was still a very terrifying thing to say though, even over a computer. As for people face to face, I try to avoid telling them I have it at all costs. If they ask or make rude comments about the way I am, then I just tell them. Having IBD makes it very hard to sustain any kind of relationship though. I can't plan to go out anywhere as I don't know how I'm going to be that day, if I'm going to be vomiting so many times, or stuck on the toilet. It's horrible and is no way to live, probably one of the main reasons so many of us with this disease have mental health issues too. There's no way to plan for the future, not even a few hours ahead as you never know what's going to happen. There's no way to be happy, truly happy, as there's always that niggling pain in your gut telling you "hey, you're sick!" which in turn gives me such low moods. It just sucks outright. 
-              Shayne Grant
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Yes. I was married when I was first diagnosed and my ex husband didn't believe what I was going through and tried to convince me it was in my head. He would often show signs of disgust when he learned how often and quickly I need to go to the toilet and wouldn't allow for feelings of fatigue.  He managed to make me feel like a failure for having this illness and would make put down remarks about the scar from my surgery down my stomach. In my current relationship I did not know how to tell my partner about my IBD and how it affects me and how my eating habits have changed due to it. I was also expecting a negative response to my scar. Despite how positive he can be I often tell him that he could better with someone healthy.
-              Hannah Tingley
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I count myself lucky, as I'm married with four stepchildren, and they have all accepted me and my illness whole heartedly. However, it was a rocky road before I met them, and even now attempting new friendships strikes a pang of terror and anxiety. I learned the hard way that not everyone is worth your time, and to hang onto those that are. One girl got mad and told me that I wasn't worth HER time as I could never make time for her. Funny, because during that period I was sick as a dog and in need of surgery. Even today, as I'm writing this, I had to cancel on a new friend because of my stomach, and I've been having anxiety that he will give up on this, and stick to being an acquaintance. I'm not saying all people are monsters and can't be understanding of IBD, but it grows tiresome when one cancels over and over and over because they just don't feel well. If it bothers my own husband and kids who see me everyday but still miss me, it surely must grow old for everyone else. On a note about dating, I know it must be hard to open up and tell this new person about your illness if they don't already know. But, again, if they are worth one iota of your time, your illness won't matter. I wasted time on a guy who made me feel guilty when I was too sick to attend social gatherings, who wasn't there when I was at my worst, and even left me stranded at the hospital when I was not allowed to drive home and was counting on him. Just because you are ill doesn't mean you don't deserve love, so hold out for it, no matter what.
-              Kathrine Zahm
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I think it's very difficult to sustain a relationship and I wouldn't find dating easy.
-              Vicki Khan
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Throughout most of my mid-20s I was in remission, so therefore my Crohn’s never really affected relationships, but the past couple of years have been a real struggle, and the chronic fatigue especially affects how people view me. I’m such a naturally busy and bubbly person, and love nothing more than being able to show someone how much they mean to me, but when my Crohn’s hits the last thing I want to do is be intimate with someone. How can you when you spend most of the day rushing to the bathroom and feeling completely drained and unworthy of love? Also never knowing how you’re going to be feeling from one day to the next is a nightmare. I’ve recently got myself back onto the dating scene, but have had to cancel dates at the last minute and it really knocks your confidence and seriously makes me question whether or not I can find someone. I don’t need someone to look after me as I’ve managed that myself for long enough, and am thankfully insanely lucky to have such a supportive family and close friends that really care about me. I just need to find someone who loves me for who I am, and can accept me, Crohn’s and all!
-              Cat Lodge
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It's made relationships difficult and different! Being ill when he wants to go to the pub or take me out for that romantic meal!
-              Gemma Willingham

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I think Suffering from Crohn's disease definitely puts a strain on any relationship and can be awkward when you’re dating. IBD can be such an awkward subject to discuss with a new person that may not understand the limitations and problems IBD brings. Then I found my amazing boyfriend who is so supportive, loving, positive and accepting of me and my Crohn's disease. It made me feel comfortable to talk about the illness and all its gory details and made the possibility of having surgery or a colostomy bag in the future much less daunting. When you find someone like that, I don't think it makes any difference. We have a normal and exciting relationship just like anyone else.
-              Kate Keen
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Yes, so much as I isolate myself a lot.
-              Diane Nugent
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The main aspect that I sometimes find awkward is when I am out on a date, or even worse when I am staying with someone or someone I’m dating is staying with me is when I need to go to the toilet so often. I get pretty self-conscious with both the frequency that I go and the smell! With regards to the longer term relationships I haven’t noticed a massive problem. I believe that if you are with the right person then they will understand what you are going through, and will do what they can to help you.
I’ve not been in a relationship since my diagnosis. I know I will find it difficult to explain it to them at first and I will be nervous and scared, I just hope they can be supportive of me. But when the time is right and the right person comes along, I hope my illness won't be a problem and they can look past all of that and love me for who I am.
-              Lisa Cummins


So let’s keep the faith here. The stories of happiness and understanding partners just reinforces the belief that when you find that person that slot’s perfectly in to your life like they were made to fit there, it’ll be worth all of the awkward explanations.

Thank you to everyone who has contributed, I have enjoyed reading them and also feel a slight relief myself like I have just exhaled after holding my breath for a long time (maybe it’s the writing, maybe it’s the Tramodol, so just to be safe I will keep doing both). Sorry I went on for so long, but take some solace from the fact that your boredom whilst reading it made me feel better ;)


Tomorrow we will ask ‘Do you think your outlook on life/priorities have changed since being diagnosed with IBD?



Go back to blog 3 about the support received from healthcare teams.