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 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 with contributions from the IBD community.
Blog 4

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?

My response:
I became very ill very fast. Two weeks sick at home and a week in the 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. The thought of trying to explain it all 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 it was me that had taken away his chance to have children… I now know that this is not true, but I didn’t at the time and I felt guilty. I think some of it has stuck with me, 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, and 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

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

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

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

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

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

I think it's very difficult to sustain a relationship and I wouldn't find dating easy.
-              Vicki Khan

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

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


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

Yes, so much as I isolate myself a lot.
-              Diane Nugent

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.