You can now read posts from the Pouch Support UK Forum directly from this site. If you are a member of the group you can link directly to posts in the facebook group to react or respond. This is a private group. If you are not currently a member, log into Facebook and submit a join request to the group J Pouch support (UK specific).
Please note that people post their personal experiences, which might not be relevant or appropriate for you. The Pouch Support UK Forum does not offer medical advice and it is your discretion whether you try any tips and recommendations posted here. If in doubt consult a medical professional.
Just had a bad experience while out, I don't think I want to go out again😪 ... See MoreSee Less
6 CommentsComment on Facebook
These things happen, try to put it behind you/learn from it and move on. Not sure what happened but when I go out, I eat very early in the day and then I snack and that helps me to go less later on
So sorry to hear that. Try to put it behind you. We all have bad experiences and learn to do things a bit differently next time. Best wishes.
Have I ever told anyone about the time I had pre-pouch amoebic dysentery on a flight from Sydney to London, stopping off at Bangkok? Public health England came to investigate my house when I got home. You really can’t let it define you. Learn from it by all means, make changes if necessary but don’t let it stop you doing things. Life’s too short. I hope things improve with the bag. I don’t know enough about them, but there are different bags and pastes you can try, I’ve read. I have known so many people who have led active lives with them. Don’t give up.
Very sorry to hear your difficulties. I had 2 or 3 bag leaks at work and one out at a restaurant. It’s not nice but it can happen. It’s a major thing you’ve gone through but it will get better. There is a powder (hollister adapt) also which I used for my skin irritation as well as the rings adapt rings. They kept things pretty healthy. Nonetheless, you will get the reversal eventually and the j-pouch brings things back to normality. I’ve had my j-pouch since May this year and it has been pretty great. Hang in there l!
Hang in there It will be worth it x
I had leaks too. It feels horrendous in the moment. It may be worse to self isolate. Please consider some of the tips others have provided…don't eat or drink for a few hours before going out, use tape ( pink, blue medical tape) to secure your bag tightly to your body, etc. I did not eat in restaurants or other events, but I went anyway, just to socialize. My friends and family understood
21 days between these photosOn the 8th September I had J pouch formation and illeostomy reversalStep 2 and step 3 done in one surgery (I woke up and was expecting a temporary illeostomy but they reversed it and suprised me)3 weeks later I’m out on my best friends hen do and I’m going back to work next week.I lost over a stone in hospital in a week, pneumonia and complications with my rectal catheter coming out on day 3 where they tend to keep them in til days 8-10For anyone worrying about these surgeries I’m proof in the pudding that a positive mindset is sometimes what we need ... See MoreSee Less
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This is amazing, I was wondering how your recovery was going but couldn’t find your previous post! AMAZING!
You look amazing and hope you had a fantastic time on the hen do. Great to hear the positives too x
You look fab. I claim all of us pouched people are just living miracles. God bless.
Excellent work and amazing recovery. Looking good!
I’ve had my stoma ( ileostomy) 5years, I know it saved my life but can’t really take to having a bag on my stomach, I’ve looked into the j-pouch and told my surgeon this is what i want! Thing is, i have my life bk with the bag i eat anything i want and feel good that i can go anywhere and not worry but like I said i hate having a bag on my stomach! I’m sorry for asking this question! Which do you find better? The bsg or the pouch? My mind is all over the place at the minute and i really don’t don’t know what to do, i hate what i have but i do have my life bk! I’m sorry about me rambling on but you have been through what i am about to go through! Is the j-pouch better? Sorry for being a pain! 😊
Well done on such a quick recovery 👏 you look fantastic (to be fair you looked good even in the hospital bed...I'm not at all jealous 😀). Keep up the great work with your recovery. You're positivity is no doubt helping (you've shamed me into increasing my daily steps 😉)
Well done, such a great result xx
You look fantastic take care of yourself and keep well X
Well done you
Well done and it certainly is all about positively And good luck remember your in charge not your pouch Positive positive positive attitude ✨️
Has anyone on here at a procrogram before and what I need to expect?This is my last test to find out why I am struggling to empty other than they think it’s muscle related before I ask to definitely go back to an ileostomy.I’ve tried the catheter and now the enemas and unfortunately still no joy with fully emptying and I am miserable and fed up of not eating or sleeping much on a daily basis.😞 ... See MoreSee Less
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I was totally honoured and humbled at being asked to share my patient experiences with a world renowned group of medics at the annual European Society of Coloproctology conference, held in Lithuania last week.What an experience this was! ... See MoreSee Less
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Well done, Ben, that’s fabulous. Spreading the word!! 👏🏻👏🏻👏🏻 I am still following your plan - all going well. 👍
Brilliant news. Good on you for spreading the word. Philippa Covell - what plan is that?
Incredible- Thankyou …. X
Well done Ben!
My fellow trustee was there representing Lynch Syndrome UK 😁
Well done ! I too have started to follow your plan..
I don’t come here often considering I am an admin. ButI should.Please be kind to one another. Nobody else will understand you like us. We may have a difference of opinion now and then, and that’s ok. But debate don’t deride.Big love 💚 ... See MoreSee Less
5 CommentsComment on Facebook
This was the exact reason why I stopped going on another site. We are all the same but are different. 💚
Hi Sam I agree x
Hi Sam. Thanks for stepping in. I am on vacation at moment. We pride ourselves on this group for being friendly and supportive and even welcome a bit of relevant humour but will not accept offensive comments or language. Fortunately this is a rare occurrence and the offensive post has been removed.
It's amazing really we've all got a pouch but all so different in what we can eat or can't eat and drink if it comes to that but do like a bit of humour and uplifting cartoons and things, lucky that this group is here for support too, long may it continue thank you for keeping is safe 😊 ❤️
This is a terrific group which offers support to pouchees in a caring and considerate way. The comment posted yesterday was totally inconsistent with these values and was removed soonest. The person who made the post has left the group. Please, at all times, be supportive and considerate. Thanks to all
Today I realised that it’s been a long time since I’ve engaged with this page.It’s for a positive reason, my j pouch is 24 years old and still going strong. I checked in with this page a lot early on.What I’ve neglected is the fact that I could be helping those coming after me in this process.So I’m here. If any of you need a sounding board or advice. Whatever.You are all stronger than you know. ... See MoreSee Less
2 CommentsComment on Facebook
21 year old pouch. It ain’t perfect. But neither am I. Stay strong and may there always be sufficient paper. Terrible jet lag this week, which has really upset my pouch. It’s just the way it is.
Thank you !
Good morning and Happy Saturday to everyone 😊Just a quick questionI have had my pouch nearly 30 yearsYes ups and downs but that's every day lifeI have always travelled and hopefully to continue to however I haven't up to this point to do a long haul flight as looking to in the new yearIt will be around 8 hour flightI have always taken codeine and always willI was thinking of doubling up on the codeine or just wait and see as I can always take on board anyone with experience with some tips to think about as I'll do a few trial runs before travelling as wouldn't want to be cramped feeling on journey 😊Thanks ... See MoreSee Less
5 CommentsComment on Facebook
It shouldn’t be a problem. I travel all the time and I have had my pouch for all most 30 years. I also take something for pain and don’t eat the food on the plane. I bring something I know won’t upset the system and enjoy the ride. Hope this helps.
Hi. I'm glad you asked this because I struggle on flights. Constant urge to go and feel like everyone's noticed the number of trips to the loo. We too are doing a long flight in February and I'm already worrying. I take immodium 3x a day and I'm wondering whether to take an extra dose. I read the other day that taking gravol (not heard of it )or other anti nausea travel medications can make you sleepy and give you slight constipation reducing the number of times you need to go. Plus eat marshmallows. Worth a try xx
I take immodium, I always have meds in carry on incase needed. But drink plenty of fluids , I eat food on plane if long haul. Last one was chicken and veg so wasn't to bad. Yes went loo few times, I have a spray I take . download films from netflix which distracts me aswell or try and sleep. Enjoy your holiday.
Hey 👋🏼 I have done several long haul flights over the years with my pouch from Scotland to USA many times. But the longest was Glasgow to Bangkok. I always just plan really well what I eat in the days before flying to reduce wind and loose stools. I avoid carbonated drinks & bring my own sandwich and snacks. I tend to make up a peanut butter & jam sandwich because I love that & it tends to “thicken” things up for me. It also means I’m not stuck buying a rubbish meal deal type sandwich at the airport (which always seem to be brown/seeded bread choices 😒). I also pick a seat nearer the rear of the plane, which are usually always available as nobody tends to pick them as a first option (means you are nearer to the toilet). And like you mentioned, take codiene & immodium in your hand luggage to be able to take when you need. Happy travels ✈️ xx
Thanks for all positive suggestions 😊 I am excited 😊
Good Afternoon pouchees,Has anyone had vedolizumab? If so, what is your experience?I have been suffering from chronic pouchitis since July 22 and I have just had to increase my Cipro dosage as my symptoms started to increase again. My consultant mentioned this biologic last time we spoke so would appreciate your experiences.Thanking you in advance. ... See MoreSee Less
5 CommentsComment on Facebook
If anyone could comment I would appreciate it too iv already killed cipro and metro after 30 years of pouchitis I am currently on rifaximin atm I don’t feel it’s helpful at all
I didn’t have any success with it but it may not have been the right thing at the right time for me - and nor did I have any adverse reaction issues. Different biologics work slightly differently, they all have some possible risk factors just like all immunosuppressants do. Good luck.
Sounds like an anti-Zombie pill.
I've been on vedolizumab since February, I don't think it's working for me though as I'm having another flare. Although, having said that, I was bleeding on the weekend before my injection and when I had my injection, the bleeding did stop. I hope it works for you if you do decide to have it.
I’ve been on it now for a year after 17 years of chronic, antibiotic dependent, pouchitis. It has definitely helped to some degree, though not enough to allow me to stop antibiotics as my consultant had hoped.
Riddle me this..If I go into a&e emergency like I did with issues they offer remove pouch next day in bton(my local)Agree to have it removed...Wait for a operation date for at marks in London....How does that work. ... See MoreSee Less
3 CommentsComment on Facebook
God knows but they offered me to have it so fast I would jump at it !!! St marks in not nice
Because the surgeons who say they can do it tomorrow are not the bed bureau who book theatre time and icu space to actually do the theatre and in reality have no business telling you when they can do the surgery They can’t do the surgery without the theatre time and staff and anaesthetist etc Hope this helps
If they are actually removing the pouch rather than defunctioning it, that’s a big operation - you need someone who knows what they are doing. Awful to have to wait once you’ve decided though
Hi guys...question.How much does it cost a month to have a stoma bag?.I was signed off while I had my last one so didn't pay for them.Tia ... See MoreSee Less
11 CommentsComment on Facebook
They are free on NHS as far as I'm aware xx
I didn’t pay for any supplies
Free on NHS for stoma patients
All stoma supplies are free on the NHS x
I haven’t paid for them, I was on maternity when I first got my stoma, but when that finished I was told to get a medical exemption card to cover myself
Once you have a stoma you also stop paying for prescriptions.
All the stoma paraphernalia is free ( wipes, disposal bags etc). I got mine from a third party company ( cannot remember the name offhand but I can get it if anyone wants it). The NHS obviously paid but I just ordered whatever I wanted online. On a slightly different note. I was never told by anyone in the NHS about free prescriptions. It was another patient just before my discharge and when I enquired it was confirmed . I am now 4 years post takedown and still get them.
You can get a medical exemption for all prescriptions
It's only free if its a permanent stoma! I had to pay for my bags as I was waiting for my J-pouch so it was temporary. The pre-payment helps lower costs. Could be worth talking about with your GP as I believe some will sign off exemptions, but mine wouldn't.