Five Things I Wish I Was Told When I Was Diagnosed With IBD

Good morning and welcome to a new week! Blogtober is still rolling on and today I wanted to share a few bits of advice for those who may have been recently diagnosed with IBD.

Me and the boys, three weeks post ileostomy surgery

My own experience was pretty horrific. I was given zero support, advice and pretty much left to my own devices. I was constantly having check up appointments cancelled and rescheduled and it left me in a pretty dire state. I hope this post helps a few of you with those initial fears and thoughts post diagnosis. I am not a medical professional and so if you need medical help, please contact your own doctor, but my inbox is always open if you want to ask anything.

You will not necessarily end up with an ostomy…

The moment the doctor told me I had Crohn’s Disease I remember thinking – oh no, I am going to end up with one of those bags. I didn’t even know what they were at the time, I didn’t know that there were different types and I honestly thought it meant the end of life as I knew it.

The thing is – not everybody with Crohn’s Disease ends up with an ostomy and a lot of people I have met with ostomies have them for reasons other than IBD, such as camcer and various other conditions. Crohn’s Disease is a lifelong condition and there is currently no cure – however many people message you on Instagram claiming to have one!

But remission is very possible and many people achieve this, often for years at a time. The key is finding the medication that works for you and while this can take a while, it is more than achievable.

But if you do have to have one – it isn’t the end of the world!

Luckily, I came across the online IBD community about 6 months before I was told I needed my stoma. It was on these amazing groups that I saw people like me, with ostomies, living their lives and enjoying them too! There were people who were still working, still becoming parents and travelling the world, despite their ostomies. And so many of these people actually said they owed a lot of this to their stomas as before they had them, they would have been too poorly to do any of it.

I don’t want to say that an ostomy is a quick fix or in any way easy. It definitely isn’t! But if you have the right support, are kind to yourself and give yourself time to heal and adjust to your ‘new normal’ you can do anything!

There is support out there and people who understand what you are going through

Finding the online support groups in no uncertain terms, saved my life. My physical and mental health was so bad and then I came across people who understood exactly how I was feeling and what I was going through. It was through these people that I learned the symptoms I was experiencing were NOT normal and I shouldn’t just be thinking I had to put up with them, I needed to seek emergency help. They taught me about IBD and ostomies, what it really means to live with them and all the tips and tricks to maintain a happy and healthy(ish) life.

If you are looking for support I recommend contacting or looking into the following:

  • IA Ileostomy and Internal Pouch Association – Support for people with an ileostomy or a pouch or are facing this surgery. You can also find tailored support for colostomies and urostomies at Colostomy UK and Urostomy Association
  • IBD Superheroes – A fab group who fundraise for Cure Crohn’s and Colitis charity. They have online support groups on every platform and have been running online events throughout lockdown.
  • Purple Wings Charity – This charity is amazing and helped me so much when I had my ostomy surgery. They also have groups on Facebook where you can ask questions and find support when needed.

What You Need To Watch Out For

My diagnosis was handled pretty poorly in my opinion. I was basically told I had Crohn’s Disease, then asked if I had any questions. At that moment my head was swimming with so many thoughts, so I said no, was given a prescription for steroids and was shown the door!

I was given no real information, symptoms I needed to look out for or any details of people I could contact if I needed help or advice. I left thinking the symptoms I experienced – weight loss, vomiting and nausea, extreme pain etc. were normal and I just had to ride them out at home as part of the disease.

This is NOT the case! For a start, vomiting frequently can indicate a blockage. This can be caused by active disease in an area of the bowel, or by scarring after a flare. This needs to be checked out quickly, especially if it comes on suddenly. Your doctor also needs to know if your weight is dropping despite you eating and drinking as normally as possible. This can indicate a flare as your body is not absorbing the things it needs. Blood and mucous in your stools are another indicator of a flare, as is an extreme amount of pain.

My first port of call nowadays is usually my IBD nurse advice line. I can call them up, leave a message and they usually get back to me within 48 hours. I will call my stoma nurse if the issue is more stoma related. If it is out of hours or on a weekend and is an emergency situation (for example you have a stoma and think you have a blockage) , you can also call 111 or visit A and E in an emergency. This is where the support groups can be helpful too, as if you are concerned about whether you need to be seen straight away or could wait, there will be people with lots of experience who can help advise. I am not a medical professional and will only advise things on my experience, if in doubt my answer is to always better be safe than sorry.

I would also advise to always have a notepad nearby, that you can pop in any questions or concerns you need to ask at your next appointment. For so long I went into appointments and would forget half of the things I wanted to ask about or say, so this has been brilliant for me.

Life can still be GREAT…

It is a huge thing to be diagnosed with a chronic illness. Anybody who has followed me for a while knows how strongly I feel about mental health support for the chronically ill – in fact it is what I am studying for at university! But if you feel you need support, ask your healthcare team! Your GP in particular can give you the information or refer you to the local NHS mental health team for help. Your consultant may also be able to offer more tailored support and know of local groups that you can try.

Me and the boys iceskating

I know a lot of people now with IBD and an ostomy. I know friefighters, doctors, parents, students, bricklayers, world travellers, teachers, kids and more. All doing this despite their health issues. My degree had to take a back seat for a couple of years when I had my surgery, but I am still going and should graduate in 2022. Your dreams and hopes can still be achieved and if you discover the IBD and ostomy community, you will also find a whole other new family of amazing people who are always there for you.

I would love to hear if you have any other questions or indeed, any other advice for someone newly diagnosed with IBD. Please drop them in the comments below! Take care and keep safe all,

7 Comments on “Five Things I Wish I Was Told When I Was Diagnosed With IBD

  1. It’s amazing all the knowledge and support other sufferers can provide, isn’t it? Like you, I wish that had been suggested to me when I first got sick. The community has been an incredible help, both physically and mentally to me; like you. Great post highlighting the goods and the bads of a serious illness.
    ❤️Stace❤️
    (FightingWithFibro)

    Like

    • Thank you lovely. I think the chronic illness community has without a doubt been one of the most important things to me and so many dont get told about it. Such an important part of managing our illnesses and lives in my opinion, to have others who really understand us and what we go through x

      Liked by 1 person

      • Perfectly said.
        I’ve found, with all due respect to Doctors, that I often know more than they do about my illnesses. That’s in part due to other peeps, like me and in part that I live this life 24/7/365…..It’s a constant fixture and battle in my life; one I spend countless hours researching, learning and studying. For Doctors, no matter how good they are, I’m a 15 minute consult.
        The chronic illness community and their knowledge, love and support is far underrated in it’s importance.
        Great post ❤️

        Liked by 1 person

  2. In my opinion, having an ostomy is not something you can call disability. Once you get used to those bags and you learn to keep several ostomy supplies wherever you go, you should be as active, healthy, and normal as other people without ostomies.

    Like

    • I agree to a certain extent. It depends on whether you have other stuff going on, for instance i have Crohn’s so my ostomy has made my life a lot better but I still have alot of problems with my small bowel. I’ve also had rheumatoid arthritis since I was a baby which comes with its own set of problems as you can imagine. I think living with the worry of a leak in public is something ‘normal’ people don’t have to deal with and if it happens can knock your confidence for six. My ostomy has definitely improved my life a hell of a lot but I also still struggle health wise so I think it is dependent on every person’s individual circumstances

      Like

    • I know what you mean but it can be tough. Your mental health can take a dip, your entire life may be turned upside down. To say your life can carry on the same is not possible for the majority of people. But that doesn’t mean your life is over or that it has to be terrible either

      Like

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