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person scrolling through phone photos and one of them is a bowel movement

7 times IBD caused me to lose my dignity

How does the saying go? Never let anyone take away your dignity? Well, that’s all very well good except I’d argue that having IBD has left me no choice in the matter on more than one occasion. Whilst I’d like to think I still go about my day to day life with pride or in a way that commands respect, I must admit that there are plenty of hospital trips, tests and life moments that have left me reeling and scrambling to have my dignity intact. How many of these scenarios can you recognise?

1.When you’re locked in the bathroom trying to get through your prep

Is there a way to prepare for a colonoscopy in a dignified manner? If so, I haven’t found it! I have accepted defeat in trying to keep up the pretence with my loved ones and lock myself in the bathroom so I can alternate between drinking (it never gets better in taste), dashing to the toilet (how can I possibly have anything left?) and hopping in the bath (because wiping HURTS!). It feels like an awful punishment for something and in 2019, surely there is an easier way to do this?

2.When you no longer bat an eyelid at having your rectum examined

You know you’ve had IBD for too long when you are no longer phased at a doctor putting their hand up your bottom to examine you. The first time I was horrified, the second uncomfortable and by the third, I’d accepted this was my life.

3.When you’re trying to catch your poo into a plastic container

Why do they make them so small? It only makes it an impossible (and sometimes messy, if you’re flaring) feat to get your stool into the container. I’m usually breaking a sweat by the time I’ve managed the task, and then you actually have to hand it over to somebody whilst looking them in the eye and pretending this is all perfectly normal.

4.When s**t gets real and you explain what IBD actually is

When you’re first diagnosed with IBD, you often give your loved ones the ‘filtered’ version of what it is: using vague terms like ‘digestive troubles’ and ‘upset stomach’. It’s actually strangely liberating when you spell out what is actually involved-although still difficult to do so in a way that doesn’t make things awkward.

5.When you don’t make it in time

Sigh. I’m not going to go into great detail but we all know what happens when we can’t respond quick enough to the call to nature. It’s an inevitable part of having a digestive condition but it doesn’t make it any easier to deal with it (P.S and is it just me or does poo just seem to go *everywhere* when this happens; making it even more impossible to maintain a modicum of dignity. Shouldn’t have admitted that-could just be me!)

6.When you’re out for the day and the stinging starts.

You’re out and about and a flare strikes. Luckily you’re able to make it to the bathroom in time but you’ve forgotten about the aftermath this can sometimes cause. The STINGING. The BURNING or the ‘ring of fire’ as its sometimes dubbed; caused by frequent toilet trips or excessive wiping. The only things that help me are a shed load of vaseline and a hot bath-not ideal if you’re away from home.

7. When you take a photograph of your bowel movements

Because it’s weird. And it’s so much easier to show than tell; meaning you snap away to show your consultant/ask a friend/ post on a facebook group (wouldn’t recommend the last one). And then you forget its there months later and someone is scrolling through your phone photos and… I’ll let you imagine the rest.

How many of these situations have you experienced? I’m hoping I’m not the only one!

*Does this advocate’s experience resonate with you at all? We would love to hear your experiences, thoughts, and stories in the comment section below!*

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The InflammatoryBowelDisease.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • 2 months ago

    One of the worst things that has happened, more times that I want to recall, is waking up in the middle of the night and realizing that you have had an “accident “. Totally humiliating. Thankfully I have a wonderful husband of 47 years who understands and tries to keep me from beating myself up. I do not appreciate having to take a shower, change linens etc. I now wear pads all the time. Always afraid to stay over someplace.

    That’s just one of many humiliating experiences I deal with. I have had Crohns for 50 years. I could write a book.

    You are definitely not alone. I feel your pain.

  • thedancingcrohnie moderator
    2 months ago

    Ugh. I know the feeling. It is the absolute worst, and the shame is unbearable. But! At least you know you aren’t the only one dealing with such awful symptoms. And having a supportive husband makes all the difference.

    I hope you are finding relief these days. Sending hugs your way.

    Always dancing,
    Elizabeth (team member)

  • Pam.Kingsland moderator
    2 months ago

    Thanks so much for sharing, @belorac. I’m happy to hear you have a great support system at home, it really can make all the difference. We would love for you to share some of your stories or experiences with our community (https://inflammatoryboweldisease.net/stories/) Sharing allows everyone to know they are not alone in this! Either way, thank you for being here with us! Warmly, Pam (team member)

  • poonicorn
    2 months ago

    Oh gawd! The Exams! Still not fully okay with that, its just so… wrong kinda like having a full conversation with the Gyno while they are doing their work in you. Kinda used to it, but will never be 100% comfortable with it.
    And the photos… I have forgotten a few and even almost sent one on accident!! Definitely need to delete them or put them in a separate file like I do now

  • Julie Marie Palumbo moderator
    3 months ago

    Thank you for being so candid, Jenna! It takes a certain level of vulnerability to deal with these diseases, but I like to think it makes us stronger in the end 🙂 We appreciate you being so open and hitting the nail on the head with what it is like to live with IBD for so many people.
    –Julie (Team Member)

  • thedancingcrohnie moderator
    3 months ago

    Number 7 made me giggle. This has happened to me before!

    Yes, it is wayyyy easier to just show your doctor than to try and describe your BM. Then of course you forget to delete the picture and someone manages to stumble upon it months later.

    Awkwardddd! lol!

    Thanks for the laugh.

    Always dancing,
    Elizabeth (team member)

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