How I Manage Nights Out With An Ostomy And Recovering From Surgery! 

Hey Crohnies!

I’ve had a lot of people ask how I manage to feel comfortable going on a night out to a club with an ostomy and especially having only had major surgery 3 months ago. I feel like after spending so much time being home on bed rest after the surgery I’m now sick of staying home and I’m really motivated to enjoy myself since now the hardest part is over! I hope that by reading this post that any of you either waiting on surgery to get a collectomy or proctectomy or really any other surgery know that you don’t have to miss out when you’re recovering or if you’re not waiting on surgery that you get your questions answered and learn about my new normal.

First off, before you decide to go on a night out, make sure you feel comfortable going on a day out! 

I am preeeeetty well known for pushing my boundaries far too early and my biggest tip is to try a good few days out where you practice walking around and are able to stand for a good few minutes at a time before needing a seat (or in my case fainting!). After ending back in hospital after a night out a few years ago after only being discharged 3 days prior for my birthday, I’ve learned how important it is to make sure I don’t push myself that much ever again… and don’t listen to that saying of spending all your money on shots and getting an ambulance home, that is a BAD idea!

In preparation of my first night out I had made sure I have been walking more and more each day and I’m now at a point I don’t feel worried about passing out in public as I can at least stand unaided for a decent amount of time. I also completely got used to going on out on days out without my wheelchair unless I know it’s going to be an extremely tiring day for me or I’m not feeling well.

I’d also make sure you discuss your planned night out with your team of doctors or call a nurse to check there’s no reason to not go out

This might feel like you’re being babied or told what to do so you’re not in control of your own life but this is super important to do. If you’ve just had any kind of major surgery or you’re in a flare up etc. the people who know what is in your best interests are your team and they want you to be safe as well as enjoying yourself. Remember if you’re desperate to go do something a bit risky you could be biased to your feelings and not be as ready to do it as you personally believe so involve the professionals to get an unbiased opinion.

I had discussed this with my nurses and surgical team at my most recent meeting on Tuesday and they said so long as I felt good on the day I was fine to go enjoy myself, this is a very different story to even 2 weeks ago when they wouldn’t have been as supportive as I wasn’t eating as well as I am now and I wasn’t strong enough to handle going out with the walking/dancing involved as it was really going to push me alongside with my wound not being as healed as it is now, I’ll include an up to date picture of my wound which I’ve now graduated to a small bandage and only have some new wound separation at the bottom 2 inches meaning the top 7 are healed up now! This is a HUGE difference from my last blog post when it had literally split from right under my tummy button to down past my pant line! I’m also going to do a 12 week surgery update with an explaination about my long break from blogging which I’ll post in the next few days.

Pick your “person”. You might need help when you’re out and you need that person to know how to deal with the situations that arise.

I’m very lucky to have my boyfriend stuart who is trained to care for me in every way I am. He can do bag changes, wound dressings, knows how to help if I become ill when out, knows all my emergency contact details alongside having all my families phone numbers and knows my medical history alongside allergies. This means if there is was any problems I would completely comfortable that he will advocate on my behalf if I am unable to do it myself. This has a very small chance of happening but it gives not only myself but also my parents peace of mind because I am in very capable hands! Since I’ve now been on my night out I know that I didn’t have to worry but having Stuart be my person meant that I had a lot less to worry about.

It is also important to have your person be able to remind you to drink more fluids or take meds if they’re due when you go out and that they don’t leave you to go home separately as anything can happen and especially for your first night out in a club setting so it’s crucial to have them make sure you go home in one piece!

Think about medical alert jewellery

I have been really hesitant to get a medical alert bracelet the last few years because I found them previously to be very garish and in your face. When I found out I was getting my proctectomy I decided to look back into this and I am delighted with the change in how gorgeous the ones you can buy nowadays are! I of course chose a rose gold one which has the information on my Crohn’s and ileostomy and I’ve also filled in the medical information on my phone which can be accessed by paramedics if you’re unable to advocate for yourself in an emergency situation and you’ve somehow lost your person… you could say I’m being cautious (or you could say I’m being mental but this gives me peace of mind!).

Remember to stay hydrated and line your stomach!!! 

Not to be a total mum but it helps avoid a hangover regardless of if you’re like me!

I didn’t think my nurses would have got over laughing at me coming in to the day ward with my pjs underneath my joggies, sunglasses on and a bin bag hidden in my backpack in case I threw up when I went in for an inflixamab infusion a good 4/5 years ago and being hooked up to extra fluids all day to rehydrate me because I was feeling so bad!

I like to take my emergency supply kit when I go anywhere, not just nights out!

This sounds much more serious than it is but really it’s my spare stoma supplies alongside some spare dressings for my wound and some plasters and painkillers (I was wearing heels so really I’m just being prepared for blisters which luckily I never got!).

Make sure you love your outfit

It’s crucial for me going out after a surgery and living with an ostomy to be able to enjoy my night that I feel like I look good! My outfit for the evening consisted of my Primark booties and 120 denier tights with a pleated leather look skirt also a Primark steal from a few years ago which is super high waisted so it comfortably hides my bag and my new scar/tummy button. I’m also wearing my new BooHoo ribbed long sleeve crop top and distressed black denim jacket as I’m always cold and don’t want to risk catching pneumonia when I’m not as strong as I used to be and my immune system needs a break.

Next I do my research on the club! 

We went to the o2 ABC glasgow and I’ve been there a fair few times so I don’t need to check where the toilets are and how accessible the club on a whole is since I know there’s lots of places to rest as I go upstairs, easily accessible toilets and I’m even aware there’s a lift for if I was really struggling that I could use.

This is probably the most important tip I have, please remember to make sure you actually feel up to going out on the day, don’t risk your health if you’re not feeling well by pushing through it and not enjoying yourself and paying for it later!

Probably the worst part of having a chronic illness or surgery is that sometimes it’s inevitable you’re going to miss out on some fun stuff. This SUCKS. The amount of times I’ve been upset because I’ve had to miss out is countless at this point but I don’t regret it when I think back on the times I went out when I was too unwell to go and it has set me back for weeks.

I have a habit of getting sick around my birthday and I’ve had to cancel my plans the day of my birthday 7 out of the last 10 years because of it but there was 1 year I pushed myself and went out and I literally put myself in hospital and it led to me getting really unwell for a good few months and almost led to me getting my ileostomy surgery in 2013… as much as I hate to admit it, sometimes the sadness of missing out is worth it in the long run.

When you’re on your night out remember to listen to your body.

When I was out I had a bit of pain in my scar on my front from doing a lot more moving than I’m used to especially with dancing and I had to go take my meds and have a seat on some stairs next to the dance floor which was great because we had a spot right next to the stairs so I could still be involved with the partying but could also rest!

I also had the beginnings of a bag leak but it was so slow that I didn’t feel it and only had some slight itching… I luckily was not drunk enough to ignore it and managed to get to the toilet in time to avoid getting any output on my clothes! It would have been perfect for my skin today but once again I’ve woke up with a leak which has left my skin in a bit of a state today! When stuff like that happens like it has 2 nights this week when Stuart’s been staying it really helps that he’s so understanding and isn’t just my boyfriend but my person, it’s great to know that no matter how bad the leak is he’s always there to help me clean up and change the bedding at 4am or get my supplies for a change of bag.

I’ve also had a busy day today visiting my gorgeous little cousin, Tommy, for his first birthday party and I had to be very conscious today of keeping up my fluid intake even though that was the last thing I wanted when I had a hangover! It definitely helped so much because once I was hydrated again I didn’t have the sickness I did when I woke up. It was great when I got back home and could relax, get on my pjs, have a takeout and have a relaxing bath!

Finally, remember to enjoy yourself! 

I know I’ve put a LOT of information in here and it can be really overwhelming trying to take everything in and not get stressed out about going out while you’re unwell but once you’re out enjoy it and savour all the moments and make lots of memories with your loved ones! I know that last night it was amazing for me to see my friends and celebrate Rachael’s birthday!

I think that’s enough from me, happy Sunday!

Jen x

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