A Support Group for people with an Internal Pouch

Thank you – I did enjoy the session. I’d forgotten that in certain circles I am perfectly normal!“ – Zoom Forum attendee.

Zoom ForumsDONATE
About Us

About Us

The Red Lion Group is a UK pouch support charity for people who have, or are considering having, an ileo-anal pouch.

The pouch support group was founded in 1994 by a group of patients and staff at St. Mark’s Hospital in London and gained charitable status in 1997.


Why Join the
Red Lion Group?

Become a member to receive ROAR! newsletter 2 or 3 times a year and access ROAR! and the ROAR! archives on the website. Every spring we hold our annual Information Day event at St. Mark’s Hospital which members can attend at a reduced rate.

Some quotes from Red Lion Group members.

I have contacted many people from the contacts you sent me. A lot were just offering an ear and their own personal experience which has been invaluable with some great advice. It has been very helpful and nice to know that I’m not struggling alone. Which is how I’ve been feeling. Thanks for yours and the groups support” – Dan.

Thank you – I did enjoy the session. I’d forgotten that in certain circles I am perfectly normal!“ – Zoom Forum attendee.

“It is so helpful to have the Red Lion Group for support and advice. I consider myself incredibly lucky to have my pouch and my local consultant and surgeon has been amazing. At times though I feel that local support is quite limited as I don’t believe there are many pouchees in and around Gloucestershire. Many thanks again for your kind support and advice” – RLG member



Become a member of the Red Lion Pouch Support Group and receive additional benefits including priority and discounted attendance at the annual Information Day hosted at St. Mark’s Hospital and receive printed copy and online access to ROAR! and the ROAR! archives.

RLG membership gives you access to a wide community of pouchees and potential pouchees and their families and friends; allowing the sharing of pouch-related experiences and tips to help in your day to day pouch management. Membership costs £10 (£5 for hardship cases, and free for under 16s) per year. Please click below to sign up as a member.

Sign Up

What's New

Stay up-to-date with all of our latest news, events and stories

Zoom into Summer series of Pouch webcasts 2021 Following last years highly succesful Zoom into Summer Series, we are delighted
Register for next event on Zoom on Monday 10 May 2021 Published 8 April 2021 Published 3 March 2021 Review
Struggling with pouchitis that’s resistant to antibiotics? MAC Clinical Research is conducting a new study for a potential treatment for
UC cases are rising, reveal St Mark’s Hospital experts Ulcerative colitis is rising, says a study by three St Mark’s
ROAR! Magazine

ROAR! Magazine

We publish a magazine called Roar! two or three times a year and meet once a year at an Information Day to hear guest speakers and take part in group seminars covering topics of interest to pouch owners and prospective pouch owners.

Only members have access to the latest edition of ROAR! and the ROAR! archives. Please contact us to request the password.




Pouch Support Facebook Forum

Comments Box SVG iconsUsed for the like, share, comment, and reaction icons
1 hour ago

Hi, I have been having problems with my pouch for some time and found out on Friday that it is no longer viable. I need to decide whether to disconnect and have an ileostomy leaving the pouch in situ. Or have a full pouch exision and ileostomy. Does anyone have any experience of either? I'm unsure of which route to take. Many thanks. 😊 ... See MoreSee Less

Comment on Facebook

Following as I have been told to think about the same and if you don’t mind me asking how long have you had the pouch

Not at all. I have had my pouch for 25 years. Began having issues approximately 5 years ago. Chronic pouchitis, pain and accidents. It just isn't working anymore sadly.

That is very sad news Are you being advised by your surgeon or a gastro consultant. Have they prescribed and tried all the different types of medication which include infliximab, Humira, or Vedolizumab

I had the same issues after 25 years but inflixumab has worked for me if possible and not done so yet please explore biologics with your specialist. Good luck whatever the outcome, sometimes I feel a permanent illeostomy may even improve my quality of life, so keep searching for the positives.

Hi Jen, i am waiting for same thing now. My surgeon told me that 50% of patients who have a defunctioning dont need to have everthing removed as it settles inflammation down, i am hopeful, good luck lovely x

View more comments

4 hours ago

How long should it take you to empty your pouch? I've just been sitting on the loo for 45 mins 😳 ... See MoreSee Less

Comment on Facebook

Been there and even longer. When you are done your done it is what it is

Some days it's like that , depending what you ate . 🤭

2 days ago

I guess we're no longer able to wee separately when we go to the bathroom right? ... See MoreSee Less

Comment on Facebook

Why not?

I only have that problem with sever pouchitus or when my Crohns flaring badly

You will be able to, give it time. Its early days

I can

The way I look at it is I might as well get both out of the way then it's less trips to the bathroom😁🤣🤣🤣🤣

It's been a little over 6 years since I last stood up to pee. Way too risky 😂

Ok got it. Thanks everyone! So it may be possible in the future, but not to rush it, and seems like better to be safe than sorry lol

I’ve never been able to wee separately since I got my pouch..

Are you male or female? For me as a male, I sometimes have stand up pees. If I were a women I’d maybe just empty pouch every time I weed!

It’s rare I do one without the other... but I get very excited when I do 😂

Very rarely happens for me

I wee a lot of times on it's own

I can go for a wee without going for a poo. But I then think, well whilst I’m here I might as well go. 😂

Occasionally, if I concentrate, especially if I’m really sore from enzyme burns.

I can now easily, but it took a fair few years. Was quite a proud moment when I did for the first time 😉

I’ve bag not j pouch but I remember after surgery I had to relearn what a full bladder felt like so maybe it will be possible in time?

As a pouchee of over 30 years, I still find it takes supreme concentration and muscle control to pee standing up! Only do when I have no choice.

It took a while but it will happen

I can 🚽

I find I empty everytime I wee. But think that's just because it's easier xx

I can. It will come with experience....but don't take risks.

It takes a while but you will be able too eventually.

Always been able to pee without poohing but it’s nice to take a break and have a sit down now and again. Early days for you Rakesh Mistry... best wishes

If I concentrate I can just wee, but so much easier to sort both ends at the same time.

Stand up if you only want to pee

View more comments

24 hours ago

Does anyone have food sensativies sweet things dairy ... See MoreSee Less

Comment on Facebook

Dairy and meat

Chocolate cake, gluten free though I would be ok. Kept me up last night.

Dairy and chocolate 🍫 still eat dark chocolate but small amounts

18 hours ago

Hi everyone currently in hospital with suspected incarcerated hernia of my laparotomy scar. It’s so painful! Just waiting on CT scan results really don’t want anymore surgery, pubs open on Monday FFS!!!!! ... See MoreSee Less

Comment on Facebook

Oh no. Hope you feel better soon and are out for Monday! 😁

That sucks.. Hope it gets resolved and you don’t need surgery! 🤞🏼🤞🏼🤞🏼Xx

*update* it’s angry adhesions which they say can hopefully be managed conservatively which is very strange since I have a large swelling at one side of my tummy! But better than surgery and I can go home ❤️

2 days ago

Hi looking for some advice from anyone suffering with fistulas connected to their jpouch, I have an appointment in a few weeks with a consultant (my own surgeon referred me to) to discuss what my options may be in terms of fixing fistulas/ preserving my pouch. If anyone has gone through a pouch redo/ fistula surgeries that can been successful I would be grateful for your input so I can be fully informed at my appt. ... See MoreSee Less

Comment on Facebook

I have a fistula running from below my j pouch to my vulva but I’ve been told that there isn’t any surgical options available due to the high risk of incontinence.

I’m just going through this process at the moment/ive had 3 seton stitches placed and all 3 came out and have left scar tissue and a communication opening from the pouch. I experience leakage & incontinence. I’ve recently had a pouchoscopy/MRI scans/Cipro/metronidazole and now on entocort steroids. Will keep you posted to see if this helps .. sending my love x

I just manage my pouch vaginal fistula with a daily low dose of ciprofloxacin 250mg and low carb, low sugar diet also helps with less leakage I find. Not had any setons or surgery as success rates are so low and for fear of making it worse/bigger as explained by my surgeon. I’m told the best chance would be to open me up and pull the pouch down over the hole but that’s such a big surgery so I’ll just manage as I am for now. Hope you can find success with yours x

Hello lovely. I've had 2 fistulas in the space of 3 years. The 1st was a vagina-bum one and was agonising. I could only manage by being on cipro permanently until they did surgery. In surgery the fistula had actually moved since the Mri and they successfully lay it open, which means they basically scrape it all out and sew you back up, essentially removing the fistula . I recovered very quickly and was pregnant a few months after! (was told I could not convince naturally due to scarring on fallopian tube due to all of the surgery). 2nd fistula was a bum one and had urgent surgery last May. I was told I would have a seton but I was lucky because when they got me into theatre the fistula narrowly missed my sphincter muscles so they lay it open, and removed it. Although it was removed the recovery was worse because I had no hospital care due to covid (long complicated story) and I got an infection which caused more issues, but the fistula has gone. I also had to go on cipro to manage the pain of that fistula too. Cipro seems to help keeping things manageable until going into theatre. So from my experience, fistulas have changed since initial MRIs (for the better) so try and stay positive whatever outcome they give you.

2 days ago

Hi All,
Looks like I will be having my takedown surgery soon after waiting a bit longer than planned due to Covid. I'm having a scope soon and all going well will have my surgery not long after.

My stage 2 surgery was November 2018 and my surgeon had planned to wait a year for takedown due to having a leak after this surgery. I had a scope in Jan 2020 and it looked like it had healed as well as it could.

I'm now looking for some advice to help me prepare for the takedown surgery and looking to hear some experiences if some of you don't mind? I am now predominantly working from home so would be hoping to return to work after a few weeks, does this seem reasonable? (I appreciate that the time it takes to settle down can vary quite significantly).

Thanks, Martin
... See MoreSee Less

Comment on Facebook

If day it depends a lot on your general fitness. It might take longer than you think. And then there will be subtle improvements further on. The ring i was not prepared for was butt burn - it can be intense! I tried many creams etc and in the end the most effective thing for me was Vaseline applied lightly. Have a renewed sympathy for babies! 😁😄😁😆 Good luck and i wish you well. X

It takes time to adjust & train your pouch... you will have many toilet trips to start with, it will feel endless but it will get better! Time is the key!

3 days ago

6 monthly CT scan to check for cancer tomorrow, wish me good luck 🤞🏽 ... See MoreSee Less

Comment on Facebook

Best wishes x

Fingers crossed for you X 🤞💖

Best wishes 🍀

All the best 🙏❤

Good luck x

Best of luck !

All the best hope everything goes well

Fingers crossed for a good result Trudy x

Best wishes Trudy Feltham

Good luck x

Hope everything goes well xx

Really hope it's good news for you xx

Best of luck to you 🙏

View more comments

5 days ago

Hi, does anyone here suffer with a fistula? If so, could I ask what surgeries you’ve had and have you had one heal? ... See MoreSee Less

Comment on Facebook

Just a seton in for me as the success rates we’re going god enough for surgery

It really depends on the type of fistula. Mine were severe enough I had my pouch excised and a new one made.

What symptoms (if any) do you have due to the fistula ?

Hi Rachael, you need to chat to Polly. Come to my coffee morning on Saturday and meet her

Being treated for a perianal abscess and fistula since the end of 2019. Initially just 1 seton that wasn't enough so they put in a 2nd. Took some getting used to (lot longer than expected) but I was fine up until around 6 weeks ago. One seton seemed to have dislodged itself and vanished. Since then my symptoms have worsened. Had a weeks worth of antibiotics and an MRI. Just waiting on my consultant to look over the results and decide what they're doing with me. There was some discussion about alternate treatment, but that was before the 1st lockdown, so you can probably imagine how far that discussion got 🙄

Please come to our coffee morning on Saturday Bradley

I had one successfully repaired with temporary seton stitch and 3 small surgeries. Mine went from sphincter muscle out to bum cheek. As others have said, success rate depends on where the fistula is and how bad it is

I had a large abdominal fistula, appeared out of nowhere as a post-op complication - I couldn’t see any way forward for it but it did heal up on its own over a few months. I guess like others say it just depends.

I have a small one since takedown 4 yrs ago (pouch vaginal) no surgeries or setons, I just manage mine with a daily low dose of ciprofloxacin 250mg to prevent it abscessing. Discussed options at length with my surgeon and as success rates are so low with possibility of making it worse/bigger I decided against it. He did say my best option is to be opened up again and have pouch pulled down over the hole if you like but I’m not ready for that as it’s a huge surgery. My symptoms are pretty manageable with the ciprofloxacin and diet, low carb, low sugar so I’ll just live with it for now

I have one with a seton in now but I did try a repair surgery about 4 years ago. It was similar to a plug, where they used pig tissue with the hope that it would graft to my tissue and close up. However it didn't work so now just living with the seton in as I didn't feel up to trying anymore surgeries

I have a pouch vaginal fistula I’m on ustekinumab I tried infliximab but was immune to it I’m hoping this works otherwise I will have to have my pouch removed

I've had my pouch for 24 years and developed a fistula in 2016. I had a few surgeries to try and solve it and eventually had a seton put in. The seton snapped last year after being in for 3 years. Under the advice of my surgeon I tried leaving it, but it became a problem again so another seton was put in.

View more comments

2 days ago

... See MoreSee Less

Comment on Facebook

Nailed it!!! I think it's because we spend so long in the toilet that we can notice it

Why does it look like she still got her underwear on..also it reminds me of the dreams you get where you can use the loo because you're in public view..

3 days ago

Anyone post menapause with pouch I feel so swollen
Weak legs
... See MoreSee Less

Comment on Facebook

Not quite post but going through it now

Yes i am. Last period was nearly 6 years ago. I went through it early. They think it could of been because of being on high dose steroids previously.

Now post menopause and pouch better than ever. Just keep doing your pelvic floor exercises😊

Yes, me. I take this twice a day and do Sarah Beth youtube beginner flow, mobility (stretch) and restorative ( legs against a wall) yoga, really really helps!!!

2 days ago

Hi I’m wondering if anyone can relate to these symptoms? I’ve had my j pouch about 10 years now (previous UC). It’s been relatively good. I’m a full time mum so I have easy access to my own toilet! I can manage my pouch because I’m at home, but I would really struggle if at work. Have to lie down on right side multiple times a day to let wind out! The mornings are ok, but after lunch I feel dreadful. Complete exhaustion. Needing the loo, then can’t go. Sometimes palpitations. In and out of bathroom for about two hours then when I’ve managed to ‘go’ and feel relatively empty I start to perk up again about 4 pm. It’s the same cycle every day. I just end up lying watching tv til I feel better. This can make school pick up difficult, and why I would struggle if at work. Thanks all x ... See MoreSee Less

Comment on Facebook

Hi Christina I have a lot of pouch issues after having my gallbladder removed 2 years ago. I don’t go out to work anymore and claim pip x

Ha e you tried peppermint for the trapped wind?

Hi Christina. I started getting lots to issues with my pouch but they then diagnosed Crohns ☹️

I worked full time while having to have bathroom visits 30 or more times a day. I had a really supportive boss. I struggled to control my pouch with diet. I developed cuffitis in my rectal cuff which in turn caused chronic pouchitis. I had enough in the end and had my pouch removed. Best decision I ever made. 13 years with my pouch. 3 years were hell with pouchitis.

I've had my pouch for 24 years now and the first 17 were tricky. Don't get me wrong I worked and functioned well, but I had to go to the toilet approx 15 times a day and often I would feel like I wanted to go then couldn't. Each toilet trip I could be up and down multiple times. I had loads of tests at St Marks, including physiology tests. I tried dilating, using a stool etc, but nothing helped. Anyway cutting a long story short it turned out I had undiagnosed coeliac. My UC was so clear cut that I'd never been tested before. It certainly explains a lot of my quirks as a child and teen. When I spoke to my consultant about what had happened to me she said it's something they test for when pouches are problematic.

Try a simple warm water enema for the times you feel you need to go but can’t, they will help you. About wind that’s normally down to diet, I sip peppermint tea all day (working from home) and that helps along with a low carb, low sugar diet.

View more comments

4 days ago

This week I’ve been granted Personal Independence Payments (PIP) for my concoction of problems, including the problems I have with my JP....

In addition to the payments I’ve learned I’m eligible for free road tax.

Is anyone aware of any other help I might be eligible for now the PIP has been agreed/awarded???

Thanks in anticipation. 🙂
... See MoreSee Less

Comment on Facebook

Yea you get free road tax if you get high rate mobility or half price for standard mobility. I get lcwra part of UC as well

Faye Errington ?

Did you know this Alex Joynes

Reduction in council tax band and discount of water rates ???

Interestingly (or not) PIP isnt related to actual conditions (other than sometimes cancer), but the effects they have on your life.

Glad you have this. A friend of mine with a pouch and a visual problem was denied it

I just got refused it, just appealed and got refused the appeal, I’m on the last stage to appeal now, I don’t even know what to say in my appeal form for the tribunal ☹️ xx

View more comments

5 days ago

Hi all I have a j pouch and have chronic pouchitis and have been told to think about having the pouch but I was wondering how long everyone has had there pouches for as I have only had it 3 years and was hoping for a longer before I had to go back to the bag as from when I first had it a lot of things have changed in my life like I have a 2 year old and I’m getting married next year and was hoping to have a bit of a normal life for a few more years ... See MoreSee Less

Comment on Facebook

26yrs but not working now 14yrs of fkagyl I have tingling muscles legs snd feet be careful

I’ve had mine for 16/17years I also have problems with pounchitis, about 3 times a year. I have an emergency pack at my doctors for antibiotics so soon as I know it’s happening I jump on them quick. If u discuss it with ur consultant and arrange with him and ur gp to have 1 of them at the doctors surgery maybe it’ll be easier and quicker to sort out thst way. Just a idea it’s what I do.

22 years. All good.

Sorry to hear of your pouch problems Ben. Did you miss the word “removed” off your post? Assuming so. Three years is not very long at all but not unheard of in people who have problems. The longest pouches are 40+ years old now for people who had the first ones way back in the 1970s (as far as I am aware). Have you seen the clinical trial for recurring, persistent pouchitis which is currently going on? See the link on the RLG website (pouchsupport.org). Some people get a lot of inflammation problems if they have/had crohns instead of UC at first op.

I had mine for 17 years, only 7 of those were good years. I made the decision to have my pouch disconnected (on my consultants advice, I wanted it removed!) & I now have a permanent ostomy. I absolutely do not regret my ostomy, it’s given me some semblance of a normal life. What I do regret is the disconnection. I still have chronic pouchitis, I spend my days & night running to the toilet passing bloody mucus & have so much pain. I am on constant antibiotics which are becoming ineffective due to the amount of years I’ve been taking them. Ultimately I am now facing more surgery to have total pouch & anus removal. Good luck with whatever you decide. I tried everything including drug trials to get my pouchitis under control but nothing worked x

Sorry to hear Melissa and hope you get resolution soon. For any potential pouchees out there, problems like these are generally at the extreme end of pouch experiences, but I think it would be a good opportunity for an update from the experts. RLG is planning a series of webinars delivered via zoom over the summer and we will hope to get Prof Sue Clarke lined up to speak on pouch problems. Last I heard approximately 10-11% of pouches failed, leading to pouch excision. The most common cause was pouchitis in people who were diagnosed as having UC originally but the diagnosis was subsequently changed to Crohns after their pouch was in place. Keep an eye on the RLG website if you are a member for more details of the webinar series.

24 years and all good 😊

27 years this july and all good , had slight pouchitis last year first time but all good now .

28 years and all good except from the odd blip over the years 😊

26 years for me. All good but problems with adhesions.. expecting surgery next month..all being well.

22 years and had a rough 2/3 years at the start. Changed diet and now all good, occasionally have a flare up but always know why. Try and speak to your consultant and give it more time. Good luck 😉

I suffered with chronic pouchitis for 3 years. I was more or less confined to the bathroom with 30 to 40 movements a day. The cause was cuffitis in my rectal cuff, essentially a continuation of my UC. I decided to have my pouch removed. It has been the best decision I ever made. Freedom from the bathroom at last. I had my punch for 13 years.

View more comments

3 days ago

Hi everyone, I had my stage 3 operation of stoma reversal and jpouch is now live, this was on Tuesday, I'm sitting in hospital still with the catheter bag as well as the one up my bum. Its day 2 after surgery and I'm kinda scared when my bowels will wake up as I've heard how frequently I'll have to go including the burn 🔥 not eaten anything yet 😬 ... See MoreSee Less

Comment on Facebook

You might not have butt 🔥! What if it's a really well behaved pouch?! When you start to eat it will be little and often until you get used to it Take it easy and recover well

Get yourself a portable bidet/douche - easily available on dreaded Amazon for about a tenner and get into habit of washing not wiping - loo roll is now your enemy & only used to ban dry after washing - use flushable water wipes or sensetive moist toilet wipes for when you eventually get out and about - once things settle down a bit you need to start training your sphinctre again so while you're at home try leaving it as long as you can before going to the loo - resist the urge a little more at a time - h IP or that all makes sense - oh and simple foods to start introducing more as you go

I remember being scared as well but I didn't feel a thing 🙂. I almost have my j-pouch for 1 year now (in May) and it gave me my life back in so many ways.

I was really scared I’d poop myself at first but even the day after my bum tube was out I could hold it in until I got to the loo! I deffo had lots of trips for the first couple of weeks but I started keeping a poop log so I could see I was going longer eventually cause I felt so defeated at first!!

Good luck, I had my pouch surgery in 1994. It changed a lot for me over the years.

Good luck.. I’ve had my pouch 4 years now & it’s brilliant! It takes time to adjust & train your pouch but it’s so worth it... any questions happy to help 😊

Good luck Rakesh - bear with it for a few weeks - things do settle down and what you experience in the coming weeks won’t be the long term position

Just remember everybody is different. I didn't get a lot of but burn, I used a barrier cream (metanium) for the first couple of weeks and now I only use it very occasionally. Nearly 13 years of my pouch. First few weeks can be difficult to get used to it and build up to longer times between going to the loo. You will find what is right for you, what to eat or not eat is different for everyone but things mash, Marshmallows.etc will help bulk up stools. Good luck 💜

Actually I've been told I need to eat something, first bit of food since 6pm on Monday, i know it should only be little but what is the best thing to have?

View more comments

3 days ago

So how many of us have fibromyalgia? Doctors are certain I have it now. Miserable ... See MoreSee Less

Comment on Facebook

I got diagnosed a few months ago

Yes u was diagnosed 7 years ago z

Yes diagnosed 3 years ago after reaction to anaesthesia for bowely operation number 38.

Can I ask you all what your main symptoms are with the Fibro?

Same here im going to try gluten free I have wesk leg muscles tingly hands snd feet headaches I'm taking extra b12

View more comments

5 days ago

Woah... I’ve just noticed that there’s 900 and odd people in this group. That’s not a lot of jpouches in the UK 😮 ... See MoreSee Less

Comment on Facebook

Not everyone is on Facebook and also people only tend to join support groups when they’re having problems x

Overall in the U.K. the indications are there are between 8000 to 10000 is

I've just been in hospital with a broken hip and no one had heard of j pouches. It was embarrassing having to explain all the time. X

The people in this group are just a small proportion of UK pouchees

Even less of us in Wales😁😂

My guess is 10-15k in the U.K. based on a few knowns and extrapolation, others think less. Amazing really to think that no one knows for sure!

This excellent group is the largest group of pouchees to my knowledge in the U.K. and is approaching 1000 members!

At the IA pouch information day 5 years ago they gave the figure of 4000 uk pouchees but will be many more now. Think it was around then they introduced the pouch registration for all surgeons to declare how many they do in a year.

I believed it around 300 pouch done in England per years in average surgeon do around 1 - 2 per year, jw is one the top surgeon probably in the world doing around 20to 25 per years, with me

View more comments

4 days ago

How do people get on with cipro? I’m at the end of my course (14 days) started feeling really sick & nausea.

Think I should have competly cut out diary products . Just had a blinking cheese sandwich 🤒😢
... See MoreSee Less

Comment on Facebook

I am lactose intolerant and they are wiping me out I feel so ill and abdominal pain so much so I am been admitted to hospital tomorrow . They wanted me to go in now but I am due my second Covid vaccine tomorrow and they want to to have it .

I was great on Cipro, not so good on the other antibiotic. I get nauseous from it and drowsy

For me the Cipro problems were cumulative, it was the neuropathy that meant I had to cease using it.

I used to be fine on it but it’s making me so ill now ! There not sure if it’s the cipro or a stricture making me ill . This illness sucks !!!

Never had problems on Cipro. Flagyl on the other hand.....

View more comments

3 days ago

My j pouch final surgeon coming towards 2 years in St mark hospital harrow, way I looked at it, i believed you never able get that 100% colon back again when it was created by God( when it was healthy), I believed leased surgeon able created j pouch, it never going been that 100% but leasted it is 30% to live back to normal, it what it is you have adjusted with that 30%, ( with me, ... See MoreSee Less

Comment on Facebook

I think it’s a bit of both Chatten, some luck in terms of your medical outcome and having a positive outlook to roll with the setbacks, focus on the good things and settle in to little adjustments to make your pouch life more comfortable. Good luck with your surgery, hope it goes well. And I would say 70-80% rather than 30% 😀

4 days ago

Are there any runners here. I'm nearing the end of 'Couch to 5k', and have noticed that after a 25 minute run, the first movement afterwards is extremely red and loose. I don't think it's blood, but can't think what else it could be.
Has anybody else experienced this?
... See MoreSee Less

Comment on Facebook

I run! I'm not very disciplined and I've only been doing it for a year since I no longer have access to a gym. I haven't noticed any different pouch or gut issues, even after a half marathon.

This happens to me sometimes I fill the loo with blood but maybe once a month not related to distance at all

I dip in and out of C25k but never noticed any bleeding after regardless of time or distance. Have you coincidentally eaten anything red before those longer runs or taken any sports drinks or anything? I usually just end up needing the loo 10mins in 🙈

I don’t think this is uncommon as I’ve heard of a few runners this happens too on other pouch groups. I finished C25K last year and carried on with running and not noticed a difference

I’m generally fine but I did a 10miler at the weekend, which is the longest I’ve ever run, and the next day I found it painful to go with blood, but that could also have been due to too much Easter chocolate cake. It could also have been skin tags. So it won’t put me off long runs but in future I must remember to not eat things that might irritate the pouch so that I can know what’s what!

Also worth mentioning non ibd people can have similar issues after a run

View more comments

3 years ago

I have a Radar Key for disabled toilets...
A few times recently, other users have been able to open the door with their key, when I had the door locked from the inside, and while I’ve been sitting on the loo!
Anyone else had this happen? 🤨
... See MoreSee Less

Comment on Facebook

Only just got mine & I am yet to use it... now I’m not sure I want to!

That shouldn't be possible so I'd suggest either a faulty lock or maybe the internal catch not working properly once you were inside. I've had others try to get in with their radar while I was in the loo but never actually got 'interrupted'.

Yes it opens doors. They should knock to see if someone is in there first but I've had this happen to me I just shout get out x

Not had that happen yet but am waiting for it to

Some lock better than others, maybe we need sticky signs saying occupied

You need to check for another locking mechanism or failing that leave key on lock inside so they can't put the key in from the outside

Yes this has happened to me too! 😱 People should be knocking before the open the door!

That happened to me when I had my bag!! Newcastle station 🤨

Really dreading having to use my key now, I have a bag too & I'd hate someone to walk in if I was mid change 🙁

Yup very nearly been interrupted a few times now - also been challenged on why I'm using it many many times

get a rubber wedge from a hardware shop, that works and its light to carry round too xxx

I’ve never had that happen. I’m going to have someone stand guard from now on!

I've had people try but not actually get in, sounds like a faulty lock.

Maybe faulty lock?? Most of the ones I‘ve used have had that handle which pulls down and locks into a hole so impossible to open from outside. There was one which had a notice about remembering to turn handle a certain way to lock door, wonder if it was one of those and the notice had been removed??

It's a common problem sometimes it's not clear that it's engaged from the outside

How long before you need a vaccine passport to enter a disabled toilet?

View more comments

2 months ago

I see these mentioned a lot on the USA group a lot. In the uk I have been them on Amazon but they are very expensive. Does anyone know where to get them cheap. Or have an alternative or even a recipe? ... See MoreSee Less

I see these mentioned a lot on the USA group a lot. In the uk I have been them on Amazon but they are very expensive. Does anyone know where to get them cheap. Or have an alternative or even a recipe?

Comment on Facebook

You can buy psyllium husk capsules which are essentially the same ingredient.

As Donna has said it works out less expensive and the content is basically the same

When I lived in the United States are used to buy these all the time very inexpensively but I can’t find them in the EU either. One big difference I noticed between using the Metamucil cookies and the psyllium capsules is that At times the psyllium capsules don’t break down and pass through me which renders them kind of useless. But with the Metamucil cookies they were broken down and absorbed easily. It was also nice that I could put some in my handbag and I didn’t have to worry about having water to swallow pills with. Just eat the cookies and voila

Can also get powdered psyllium husk on amazon

Just get the capsules they are cheap and cheerful on ebay xx

Thanks for asking this Chris, I’ve been wondering the same. Do people who take the capsules find they work? How much do you take and when?

I’d never thought of finding a recipe for them before.. I had a quick google and found this, the look quite yummy! franlife.blogspot.com/2006/06/recipe-psyllium-cookies.html?m=1

Fybogel...same thing

Metamucil, psyllium husk and isphagula husk are all the same rhing

If you want to achieve the same result on the cheap look up 'Psyllium husk'. Go easy on it, mix well with a small amount of water and have it before a meal.

In the U.K. You can buy husks in capsules, I open the capsules and sprinkle onto food. you can also buy husks loose in packets but not seen any for a while. Another option is fibogel, a liquid drink with soluble fibre. I buy them on eBay, much cheaper than Amazon. There are also generic available which are cheaper

Try Holland and Barrett.

Those of you who take psyllium husk powder, how much do you take and when? I got some last week but have no idea how much to use!

View more comments

5 days ago
Gary Bronziet

... See MoreSee Less

Load more