10 things I've learnt living with my J-Pouch
This weekend I had a message from a lovely person on social media who was worried about the prospect of having a J pouch and what this would mean for their life going forwards.
They asked whether I could give them some hope for a good life with a J pouch and I’d like to share this with you all in this blog.
There is so much more I could have written but I hope you find it helpful and it gives you hope and inspiration should you need it.
I wanted to clearly point out at the start that this is my experience and should not substitute any medical advice, I just wanted to share my experience in case it could help reassure you and answer some of the questions you have.
A bit of background:
I was diagnosed with Ulcerative colitis (pancolitis) in 1999 at the age of 9. I had a total colectomy and ileostomy in 2001 and Ileal Pouch Anal Anastomosis (IPAA) (aka J pouch) construction and ileostomy reversal in 2009. You can read more about my IBD journey here. https://nalmclinic.com/blog-1/2020/1/19/my-ibd-story
How did I find having a bag?
I was very young when I had the surgery (11 years old) and I think perhaps this helped me deal with it – I didn’t really know any different and didn’t question much at that age. For me the most important things were school, my friends, family and riding my pony. I hadn’t been able to go to school for a year as every time I did I came down with whatever bug was going around and had a flare, so I hadn’t been able to see my friends for ages. I hadn’t had the energy to ride my pony in the months leading up to my surgery and we had stopped seeing my wider family as I was too ill. So all in all, life was pretty crap because I couldn’t do anything of the things I loved!
The surgery went well and I adapted to having the bag really well – I learnt to change it and manage it myself from the off rather than my Mum doing it for me initially which I think helped. Before long I was back at school, seeing my friends and back riding my pony, so for me it felt like the best thing ever – it gave me my life back! The only negatives I remember were not being able to wear low cut jeans and bikinis, the odd bag leak, not feeling confident enough to sleepover at friends houses lots, and losing my bag diving into a pool on holiday (rookie error!).
If it was so great, why did I choose to have the J pouch?
To be honest, from the moment I had my bag surgery the plan was to have the J pouch when I turned 18. I am not sure I really knew it was an option to keep my bag, the surgeons just said that was the plan and at the time I didn’t question it.
What was the surgery like?
In all honesty, it was hard! I went from being really well to being back in hospital in pain again and that was really hard both physically and mentally.
The J pouch surgery usually happens in 2 steps if you have an ileostomy – they form the internal pouch from the end of the small intestine by connecting it to the rectal stump and they form another stoma for a bit to allow the pouch to heal. The second surgery takes down the stoma and reconnects the intestines back together.
The wait between the two was longer than the surgeons had originally planned for me because my recovery from the first operation was slower than expected. There were no complications, I just really struggled with the recovery and it was hard for me to get going again. We waited 3 months in the end between the surgeries. I don’t recall the second one in as much detail, but everything went well. One thing I do remember was pooing for the first time in 7 years! It was a very weird feeling to start with and not formed at all but that got better as I got better. That was in April and in the October of that year I started university and enjoyed my university experience as much as anyone without a J pouch – it didn’t hold me back at all.
What is it like living with a J-pouch?
I love it and I wouldn’t change it for the world. Although I know I have been very lucky that I haven’t really had many complications with it.
The data shows that around 23% of people have post-operative complications and 50% of people get pouchitis (inflammation of the lining of the pouch), both high statistics and certainly something anyone should be aware of before having surgery (1).
I did have quite a big hiccup around 2010 when I got the norovirus at university. I never really properly recovered from it and had lots of problems with bloating, pain, weight loss and hair loss in the months and years after it. It was only when I saw a Nutritionist that she showed me that the way I was eating and living wasn’t very supportive for my UC and for my J-pouch. I had always been told that diet didn’t make any difference to my UC so I lived accordingly! But when I changed the food I was eating to be more supportive for my UC and pouch I felt better than I had felt in years and my symptoms improved hugely. This experience made me realise that what I had been told about diet was completely untrue – of course it matters what you eat!
For me that was a life changing moment and is what made me retrain as a Nutritionist to help people with IBD and J-pouches to live a better quality of life, but there are some more things I’ve learnt that I wanted to share with you in case they are helpful to you too:
10 things I’ve learnt living with my J-pouch:
You can achieve anything - Having a J-pouch won’t stop you doing anything you want to do – I live a great life with my J-pouch and do everything I want to do and more. Some highlights over the last 13 years have been - 6 years at college/university, one full time job, setting up and running my own international clinic, lots of travelling and holidays, two 12 mile Tough Mudder races, one 50 mile walk over 22 gruelling hours, 2 half marathons, regular hill and mountain climbing, and getting married.
You will easily adjust to a new normal – I would say I live a normal life with my J-pouch but I when I compare my life to others without IBD perhaps its not entirely normal! However, that doesn’t bother me – I might poo more than people with normal intestines and I might have to be a bit more careful about what I eat, but I have got so used to it that it is normal to me and doesn’t stop me living and enjoying my life to the maximum.
Surgery isn’t a cure for IBD – I was led to believe that removing my colon would cure my UC but actually it only means I’m in surgical remission. I still have IBD (UC) and I still occasionally experience some of the associated side effects – for me these are eczema, fatigue, and bloating but I manage these well now I know how and I experience them less and less.
Recovery can be hard and you need to prepare yourself mentally for surgery – especially if you have spent quite a while feeling really well with the bag. I was 18 when I had the J pouch surgery and I hadn’t given it a second thought as to how the surgery would impact me physically and mentally. In hindsight, I would have coped so much better if I had been more mentally prepared.
Getting used to pooing again can take a little time – it was strange and took me a little time to get used to pooing again. Barrier cream can be a real life saver when you first start pooing again as the skin around the bum isn’t used to it - something like Subocrem, Vaseline or Bepanthen works well I have found. When I first had the surgery it was very watery but as I recovered it became more solid. I find now that the constancy can change depending on what I have eaten, what I have drunk (alcohol isn’t great!), and how stressed I am, but I know this is different for everyone. It also took me quite a few years to feel confident about what was poo and what was wind!
Your loo-dar (loo radar) is still handy – I think this is inbuilt in anyone with IBD! But I still find it reassuring to know where the loos are should I need them. I can now hold on for quite a long time if I need to go to the loo but I prefer not to hold for too long as I find it uncomfortable. I usually plan to be near a loo when I eat a meal as for me its usually a 1 meal in 1 out situation!
What you grew up being told about always going to the loo before you leave the house will be useful – I always go to the loo so my pouch is empty before I leave the house so I’m confident I won’t need it again for a while.
You will still dream about your bag – I still, at least once every couple of weeks, dream I have my bag. When I say dream, its normally some kind of nightmare about it being really full or leaking! I had never shared this with anyone before until a couple of weeks ago. I spoke about it with a friend who has had a similar journey to me and she said she got them too! It was such a relief to find out I wasn’t the only one! So perhaps sharing this will resonate with others too!
You still have to look after yourself – I have discovered that I can push my body to limits I never thought possible but that I also need to look after my body and my J-pouch so I can feel as well as possible. I do this by eating good food, getting enough sleep, having enough time to relax and unwind, and exercising.
What you eat is really important despite what you might be told – this is something I learnt way too late and is the reason I retrained as a nutritionist. What you eat with IBD and with a J pouch can be the difference between just existing and getting by to having a really good quality of life and feeling normal – I just wish I’d known this earlier.
References
Ardalan, ZS, Yao, CK, Sparrow, MP, Gibson, PR. Review article: the impact of diet on ileoanal pouch function and on the pathogenesis of pouchitis. Aliment Pharmacol Ther. 2020; 52: 1323– 1340. https://doi.org/10.1111/apt.16085
If you need help with your IBD or J-pouch I work with people in the UK and internationally to live a better quality of life with IBD and I’d love to help you.
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