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 IBD affected your relationship with friends and family?

These blogs were released over a week in celebration of World IBD Day. This one aims to highlight how IBD affects sufferers not just physically, but mentally too. 

Blog 2


Sustaining relationships with friends isn’t the easiest of tasks at the best of times, especially as you go through the different stages of life. Consider how many people you were friends with at school that you just drifted apart from. People that you have worked with and lost contact with as you’ve moved from job to job. Even your life not moving at the same pace as your friends takes its toll. People settle down, have children, and life changes. You tend to become friends with people that you have common ground with, so you’ll have more to talk about with other parents. Your friends may have settled down while you’re still single and suddenly all conversations surround what ‘the little one’ did today, or what the husband hasn't done around the house this time. How are you supposed to relate? The men can bond over kids and a mutual appreciation of a certain team in sport or a fondness for tits.

Life changes and people change with it, and not all friendships can survive that change.

So add a life long illness into the equation and where does that leave you?

My response:

I have been made to feel like ‘the moaner’ or the ‘let down’ of the group, and it sucks when it turns out that the people that you thought were your friends have started resenting you. After all, you only complained to them in the first place about how you were feeling because you thought they gave a shit, right?

Well, they often don’t. You see their eye’s glaze over as you’re in the middle of your story about what happened at the hospital today. You hear the lack of sympathy in the question “Oh, you’re STILL not better then?”, “Is your belly playing up AGAIN?” *yawn*

Well, fuck them! They aren’t the ‘friends’ I’m interested in keeping. Keeping a friendship going can be hard work, especially when you’re struggling just to keep up with daily life due to pain, fatigue, or depression.

I am not as open as I once was with friends or family. I will tell them what’s physically going on if they ask, but sharing my emotions is a whole different story. I don't want pity. I don’t want people to worry. I don't want to be the reason that the people I care about are sad.

I don’t expect friends to understand the ins and out of everything and I appreciate it when they ask questions about my disease, because it shows that they are trying their best to understand.

All of the changes in my relationships I see as positive. It’s helped separate the wheat from the chaff. The genuine from the shit heads and for that I will be forever grateful. My friends are brilliant and I have a lot of love to give to those that deserve it. The rest, however, can go fuck themselves.

My mum is an absolute star. Granted our relationship before I was ill was terrible but it’s surprising how much of an effect nearly popping your clogs can have. She is very proud of me and my journey and often talks about me with the highest respect and admiration. You know how new mums carry photographs of their children to show off to people? Yeah, my mum never did that. She carries a photograph now I'm all grown up! She’s the biggest advocate I know for #IBDSuperHeroes and she carries spare wristbands wherever she goes. You’d be surprised how often she talks to someone who has, or is close to, someone who suffers from IBD. I can’t help but feel guilty though, as I see the woman that brought me into the world’s eyes glisten when she tells people that they’ve no idea how amazing I am and couldn't begin to imagine what I've been through.


Your responses:

IBD hasn't affected my relationships at all because most of my friends had already buggered off 16years ago when I started having major problems with my back. As soon as you let people down, they "forget" to include you anymore, so now I have only a small group of friends and immediate family who even know about my UC.
-              Ian O’Donnell

Yes most definitely, there's a sense of guilt with being constantly sick, to have to give this life to someone else to have to deal with be it as a friend or in a relationship is very hard, I struggle to allow people to see that I'm sick, it opens up a bunch of questions which I don't want the other person to have to worry about, I want them to want to be my friend/partner because of who I am, I want to be more than my illness one day. And I'd like for my friends/partner to see me as more than sick.
-              Joey Pullen

If it has with my friends then it would be both ways, positively and negatively. Positively it lets them see that i am sick and kinda of what to expect from me physically in relation to work. I over do it most of the time and hate to let my condition define me physically yet it is hard. It has also made them aware to what Crohn's disease is which is always good. Negatively a lot of the time I just keep to myself now. I don't hang out as much as I used too. I hate the fact that if I eat something or drink something I immediately need to use the washroom. I get scared to have accidents. I mean having and dealing with Crohn's disease has given me the mindset and attitude of " I don't care what the hell people think of me" and " I can take on and defeat anything!" But still there's always the voices in the back of your head.
Now with family such as my wife and kids I couldn't ask for anything more. They have been the glue to hold me together in my worst times. They see what I deal with and how I deal with it and I believe it shows them that even though you can be down you're never out. My strength in turn transfers to them and also I think it opens their eyes to how everyone deals with issues and not to judge people by them. My parents and sister are a whole other emotion. How anyone can be jealous that they don't have a chronic condition is beyond me. They mimic my issues with no dr visits or diagnosis. No meds are taken, they are fine one minute but when they learn I'm sick they become sick and want ME to feel sorry for them. They are all vegetarians and constantly tell me what to eat, how to eat and that I make my condition worse by not being a vegetarian. It has truly ruined our relationship and I've told them this. They just don't care and keep pushing. It's more annoying now as it has pretty much killed any other emotion one can feel anymore.
-              Brian Jones

It has brought me a lot closer to my family, whereas I have lost out on a lot of friends. My boyfriend at the time of my diagnosis was very very supportive and I couldn't have asked for anyone better.
-              Charlotte Lewsley

Relationships... well any friends I had are long gone, I have made new, think more like people I know now than friends. People just thought I was putting it on, never going out, cancelling days out, party invites etc. Then I started keeping people at arm’s length when it looked like they wanted to be friends as I couldn’t stand the hassle of explaining why I couldn’t do things. It has also changed family relationships for the same reason, though parents are supportive. My relationship with my children is great but I feel I have lost out on having great family time with them. I got quite a lot better after my Ileo for 5 months and my eldest said it was like getting her mum back. I was gutted when the UC came back with a vengeance in my rectal stump. My marriage is solid though sometimes I think hubby feels more like a carer sometimes than a husband. Though we realise this and try our hardest to have quality time together. I did things that I knew that would have me flat on my back for days afterwards like go to the pub for karaoke but to me it was worth having a normal night.
-              Jane Killin

Yes I would say it has as far as friends are concerned but some of that I think has been my own doing to be honest. When you’re feeling poorly you don't want to go out so you can end up segregating yourself from loved ones. A spontaneous night out can turn from a bit of fun to a total nightmare not knowing where loos are and such can cause anxiety to rear its ugly head.
-              Tracey Natasha Carroll

IBD has affected my relationships with family in the respect that I can be treated as fragile or sickly. This being the case is true however in my mind, dreams wishes and opinions have never altered only my abilities to achieve them and my body to execute them.
I always felt supported from my own parents and family the conflicts or sense of being unworthy have unfortunately come from married in family. Understandably they would see the struggles and pressures put on my partner and are primarily concerned for his welfare over mine.
Having said, this after my recent huge operation which is potentially starting to give me some control over my life and back to a more normal normal the unprecedented support and admiration of strength to keep fighting and try to make good out of my devastating situation has overwhelmed me.
Is it more understanding of the debilitating issues I had and still face? Is it the work of Charities and organisations like #GYBO breaking the taboo and helping people to see the invisible illness?
We can only speculate.
My relationship with friends I am very lucky to say has remained untarnished as a whole. I can feel isolated at times not being able to contribute to the work chatter or be available for every opportunity as being health conscious and aware of my limitations play a part. I can say with all honesty my friendships from before diagnosis 18 years ago are as strong as they were then. I believe my personality and character wins out. They are also good people and can see past the illness.
I have also made some wonderful friendships since becoming unwell and they have seen me through many rough times.
Some have also a chronic IBD issue and that "band of brothers" feeling has made me very close to them. Yet we moan and release but the 2 ladies in particular are as sharp and dark in their humour as I am, making for mainly rolling of eyes and laughter. Well if you can't find some fun you cry yourself to sleep every night.
-              Heather Thomas

Before IBD I had these people called friends. After a few last minute let downs the invites to go out tend to dry up and people don't want to talk about poo! Also I do get annoyed at feeling I have to prove my illness is real to friends and some family.
-              Dave Carden

Yes with regards to friends. They've lost interest as I keep cancelling and letting them down. With family I think we've got closer.
-              Brenda Meakin

IBD has had a huge effect on my relationships with family & friends. Many previous misdiagnoses caused tension between myself & my family. I was diagnosed with Crohn’s Disease on October 2014 after a 2 month stay in hospital. I was admitted to a Children’s Hospital that was 2 hours away from my family & friends. This put a huge strain on all my relationships as I hardly saw any of my friends & it was difficult for my family to visit every day. Since being released from hospital my relationship with my family has improved & they can now understand how I am feeling. There is however still conflict at times due to the IBD’s effects.
I never really had many friends & my relationship with them was very poor prior to my diagnoses. I felt very lonely in the hospital as I was so far away from my friends. From my stay in hospital I learned who my real friends were. Some of them visited me, despite me being so far away & others called or texted me every other day. I felt a huge strain on my relationships with them after my diagnoses & at times felt awkward or different. I began to avoid them & places I would see them such as school. This caused more strain on my friendships & I felt worse. I am now trying to be more outgoing & socialise more. I have since realised that perhaps the reason I felt I didn’t belong was down to me being too afraid of socialising after spending so long on my own just trying to figure out my illness. I have learned over the last 6 months that my poor relationship with friends wasn’t due to my illness but myself. I have recently realised that I distanced myself from my friends who don’t know much about my condition. I was told that they haven’t invited me places as they were worried that I would be too ill or because they were afraid that I would collapse or die (due to not knowing anything about IBD). When I heard this I explained my condition to them & this has improved my relationship with them.
-              Becka McKenna

Yes, most definitely. I was diagnosed as a teen and it really affected my friendships. My friends were discovering pubs and boyfriends and all I wanted to do was sleep. I couldn't join in and became quite reclusive. I lost many friends by simply being out of sight and out of mind. It isn't so bad now. I'm older and not so bothered about the quantity of friends I have. I keep a small close circle of friends who understand. We don't see each other as much as we like but when we do its fab! These girls have their own 'baggage' and totally understand when I call the day before to cancel because I feel rubbish.
Family..well, to be honest I'd say IBD has brought us closer. My family have been a rock through everything and have helped me cope with the illness. We share everything and all know to make the most of each day. I can talk about anything with my Mum and my Sister and they are always on hand with a hug.
I adore my little family; my hubby and my son are my world. Having IBD I feel like I let them down when I can't do things because fatigue is kicking my ass, but they have never made me feel like a lesser Mum or Wife because of it. They hug me when I'm down and we make the most of the fun days when I can.
You learn to take each day as it comes, value people for who they are and see they world in all its beauty..because who knows what tomorrow will bring.
-              Cassie Kingswell

My illness if anything has brought me closer to my family and my two best friends have IBD so we understand each other better than before.
-              Lorraine Hepburn

Simple answer is no, as I won't let it.
-              Stephen Gomm

Yes BIG time. Even those closest do not get it & can easily get frustrated by offering advice on how to deal with things. The advice is often totally wrong & a health risk. My best friend asked which ward I would be on, dates & visiting times knowing I was having a colostomy. She never visited, there was always an excuse, work/family etc. She arranged to visit me at hm at a set date, at 10 am. This was a mammoth ordeal for me with washing, dressing, eating etc. At 4pm when there was still no show, so I text messaged to say my Mum was just visiting I hope u r ok? From my part I didn't know if she had had an accident, forgotten or may turn up any time. the response was sorry I'm time short. It got to week 8 of recovery, & another friend had taken me out for a food shop I was still unable to drive or lift. On my return there was a curt message on my hm phone, saying I have knocked at yr door & no one is answering & ur car is here. It felt like an ultimatum of why aren't u in when I have come to see u unannounced. I replied explaining where I had been (my 1 day out for necessities I may add) & she asked when she could visit. I gave a date & time, she showed up, would not come in the house, & said she had been a shit friend for not being in touch, she didn't wish to fall out but she needed to be there for her family. I said fine, but how is it I see u on FB out every night partying? She said that's my business & I am not having a party like u off work. That was serious blow No1. Then she said u put everything on FB so why would I need to visit, u seem happy enough? I said that I only put positives on FB, & when u are house bound perhaps u communicate on FB more, and how come she could not pick up the phone to cancel when agreeing to visit. Was it wrong for me to care that she could be dead in a ditch when not showing up or communicating? I said that I was embarrassed to talk about the colostomy bag as it was humiliating and hard to deal with in many ways, so I had only said publicly that it was 3rd time lucky with another tummy op & no one was the wiser. Her face, communication & body language was so confrontational when she said "Embarrassed, degrading well why would u feel like that?" And she walked away with my chin agog. Needless to say we have not spoken since. Other people such as fellow students, a select few have been so exceptional. When I have had to make an exit, one has taken notes for me, another photographed outcomes and it has been an overwhelming compassionate comparison. I choose who I tell carefully.
-                Sara Williamson

I've become withdrawn from friends & family, many reasons I don't want to be a burden on others, I try keep myself to myself only my parents really see my suffering.  I rarely go out & just kept in contact with friends via texts with the usually easiest option 'yes I'm okay!' Saves the questions which is where I struggle the most!
-              Gemma Willingham

Some make me sad, some make me smile. I suppose it’s just luck of the draw and depends on the people we chose as friends to begin with!

Thank you to everyone who has shared their thoughts and feelings for this blog! It’s very much appreciated!

Join me tomorrow as we ask ‘Do you feel you feel you getenough support from your healthcare team?

Go back to blog 1, covering mental health.