Who is the Stoma Bag Lady?

My name is Rachel Flint. I am a reporter, music-lover, blogger, workaholic, avid reader, and have a phobia of mini eggs.

Looking at me you would have no idea of what my life has been like for the past 14 years. But for the majority of my life I have suffered from a chronic, debilitating condition, which has left me unable to leave the house, in crippling pain, and at times, wishing I was dead.

Yes, I suffer from Ulcerative Colitis, a form of Inflammatory Bowel Disease (IBD), the sister condition to Crohn’s (you will see many of my posts refer to the fact I have Crohn’s, it is only since my entire bowel has been removed that the surgeons have decided I actually have UC).

In May 2013 (25 years old) after years of battling against this all consuming illness, I finally ran out of options and was forced to have emergency surgery to have my bowel removed. It was something which terrified me. I had avoided the surgeons knife for as long as possible, mostly through fear of what life with an ostomy bag would do to me as a young woman.

It was a rocky road – with a few too many hiccups, infections and re-hospitalisations along the way – and a massive learning curve, but I have never looked back. I still had problems, as my rectal stump filled with ulcerations and disease was still in place, and I had two ostomy bags – one for my fistula which spurted blood and the other for my ostomy – despite the on going problems it was the best I had felt in years.

So much so that in March 2014, almost exactly a year after my first operation, I made the decision to have my ostomy made permanent. I had the last of my bowel removed and me and my stoma, called Winnie, became lifelong best friends – not even death will now separate us!

I had thought this would be a difficult decision, but in the end having my sub total ileostomy gave me my life back. Before my first operation I had struggled to get through every day, often finding it hard to stay away from the toilet for more than half an hour, having an ostomy gave me some control over my life. Life is still by no means perfect, a lot of damage has been done by years of fatigue, malnourishment and weight loss, but compared to before I will have it any day.

My ostomy gave me my freedom, even if she is temperamental, at least I’m not screaming in a toilet somewhere – it’s what they call a no brainer I guess.

Anyway, this blog is a candid, no holds barred diary of my life with my stoma, and the adventures we have now that she has given me my freedom.

I wanted to show the world that having an ostomy is not the end of the world (like I thought) but is just the beginning. And even more importantly I wanted to break the stigma and misunderstanding surrounding IBD and ostomy bags – they are not disgusting, we are not unclean, and we can still be damn hot despite not having a bowel – in fact I’m sure mine made me hotter.

So just four weeks after my first operation I started this blog and the challenge clock started to tick. I have five years to complete 101 challenges (well there are really a lot more as I have the Visit England ones), some are funny, some are scary, some are weird, and some are downright impossible in the amount of time I have.

I hope you all enjoy watching as me and Winnie stumble through this journey. There have already been a lot of mistakes along the way, and a lot of lessons have been learned. I hope that this raises a smile in dark hours, and brings hope and comfort. If just one person reads this and gets some help from it, or better understanding of this illness, it will have all been worthwhile.

And yes, you have seen me on TV.

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13 thoughts on “Who is the Stoma Bag Lady?

  1. Just came across your blog as I head on the downwards spiral once again with my UC symptoms, feeling very alone and not worthy to show my face anywhere. Your bravery, honesty and humour has been a godsend. Thank you, I hope you understand how much you’re helping others!

    • Hi Clare, thank you for these kind words. I’m just trying to be honest 🙂 people don’t realise how much of a balancing act and battle living with UC is. I’m sorry your starting another flare, they are horrible at the best of times. Try to stay strong, and no matter how alone you feel realise you are not on your own in this.
      Please feel free to email or tweet me if you want to chat 🙂

  2. I am sure you have heard about the GAPS DIET By Dr Natasha McBride and SCD DIET by Elaine Gotschall ? I am currently on GAPS due to IBS with a qualified Gaps practitioner. Obviously not the same as Crohn’s but there are people with ulcerative colitis and Crohn’s blogging about how The Gaps diet is working for them. Just sharing incase you have not heard of it. Take great care and all the best in your healing journey. Mind, spirit and body alike.

  3. Hi just came across your blog, your are amazing. I have had my friend for 1year and had crohns for 22years. I am going to start a ladies underwear business next year with my sister and try and supply some low priced beautiful underwear for all the ladies with a friend{stoma} like mine. I have really bad scaring as I have had 2 stoma and 2 hernia repairs. But I still like nice underwear and I am going to try and make a difference if I can. I will be looking for models after Christmas to model my designs, if yourself or anyone is interested please let me know picturestitch@gmail.com take care everyone Nicola x

  4. Hi stoma bag lady.

    My wife has a stoma and she has asked me to contact you to ask two things, firstly what swimsuit do you have and is it a normal swimsuit and secondly does your stoma ever bleed and ulcerate regularly. Have you got any tips to help her?

    I saw your interview on bbc breakfast and have been following you on Twitter since

    If you could let me know that would be great

    Thanks

    Michael

    • Hi Michael

      Sorry it has taken me so long to reply, I’ve been away.

      I have two different swimming costumes, one for exercise, the other for the beach and more ‘stylish’ occasions. I got my costume from Debenhams, and it was the best call I ever made – it is very similar to this one: http://www.debenhams.com/webapp/wcs/stores/servlet/prod_10701_10001_064020403403_-1

      The skirt on it makes me feel really comfortable, and with the gathering around the waist you would never know I had an ostomy – it also stayed secure in the sea and on water rides!

      Tell her not to bother with the specialist swimwear – there are some really good costumes on the highstreet and with the tummy control the choices are endless.

      Yes, mine bleeds fairly often. It tends to happen when I have cut my bag slightly too small, or have put it on at the wrong angle. This is also when I get little white ulcers on it – I would suggest experimenting with the angle she is putting it on – try eating different foods, no rice, pesto or other food types which are hard to digest for a day or two just to give the skin a rest.

      If it is the skin area, try using slap cream, your doctor should prescribe this – it really helped me when nothing else works.

      Let me know if there is anything else 🙂 hope it helps a little bit!

      Rach

  5. Hi Rachel,

    I am booked into have proctectomy surgery in 2 weeks and was wondering if you have any tips to help with recovery pre and post surgery? Also, how long were you off work for? I have Chrons disease and have had an ilestomy for 7 years.

    Thank you in advance for your help. Your blog is fantastic and only wish it had been around 7 years ago.

    Georgie

    • Hi Georgie I’m so sorry I’m only just getting back to you, I realise by now you are probably in hospital.
      I’m so glad you got in touch, I suppose my main piece of advice would be to relax, not run before you can walk and to buy a cushion with a hole in (like for piles!)
      It will honestly be the best investment of your life for the next few months!
      I’m not going to lie, I was off work for a really long time but that was mostly because I had my surgery during a flare up and had a few healing problems after.
      Hopefully you’ll only be off a few months, especially if you eat properly etc and get out of hospital fairly quickly.

      You’ve already been through the hard part with the first lot of survey, getting used to having your barbie bum is hard, and don’t be surprised if sometimes it still feels like you need to go – I still get the feeling now from time to time.

      But seeing as you already have a Stoma your already well on your way there – and after having Crohns for 7 years in sure you will never regret having this surgery.

      The thing is to stay positive, give yourself little goals like walking a tiny bit further for a coffee etc and try not to sit for too long at first as it can be uncomfortable.

      But good luck, it’s all 10000% worth it in the end! Well in my experience any way 😊

      Let me know how you get on and if you have any questions at all give me an email

      Rachel

  6. Hi–I just found your blog while doing some research on stomas and I just wanted to comment on how lovely you are and how great the work is that you are doing to destigmatize having a stoma. Thank you!

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