WELCOME TO THE
RED LION
POUCH SUPPORT GROUP

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.

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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.

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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

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Membership

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.

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What's New

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

Zoom into Summer series of Pouch webcasts 2021(Updated 7 May 2021) Following last years highly succesful Zoom into Summer Series,
Mind over matter They say buying a property, getting married and having an operation are the three most important events
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
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.

LATEST EDITIONROAR ARCHIVE

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Pouch Support Facebook Forum

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7 hours ago

Had pouch scope need to go to st marks for ballon dialation again !! ... See MoreSee Less

2 days ago

I’m not entirely sure if this is the right place to ask, but I have a lot of left over stoma supplies from before my transplant. I have a permanent colostomy now but these items aren’t useful to me anymore. Does anyone know of any charities I could donate them to? One charity told me to send to them through Hermes but they don’t go over 25kg, and another courier is saying they won’t be able to deliver because of the nature of the products. ... See MoreSee Less

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Jacobs Well donate them to poorer countries. www.colostomyuk.org/information/donating-surplus-stoma-supplies/

WIsh I'd known about that link, but most of my bags were pre-cut specifically to me. So I had hundreds of them when I was de-bagged. I put out a Facebook post offering them to artists, but no luck. The fools - if they'd filled them with concrete or yoghurt, they could have been the next Tracey Emin.

20 hours ago

Book starting to come along nicely. ... See MoreSee Less

4 days ago

Anyone on HRT with their J pouch ? ... See MoreSee Less

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Yes I’m on the patches, no problem at all xx

Me, no issues infact love my HRT estrogen and progesterone

Yes I've been on patches for about 4 weeks,terrible spots and cramping like I'm going to have a period..so hope it's temporary

Patches for me too, no issues!

Yes on tablets. Coming to end of the 3rd month. Not seen any difference in pouch

Yes, no problems

Yes I've been on patches for nearly 2 years, no issues. I feel so much better for it, saved my life, I thought I was losing my mind.

I'm on Femiston Conti tablets and I have a J-pouch.

Yes been on patches for a few months now, they work better than the tablets !! X

Yes tibilone synthetic tablets been on them approx 7 years xx

What symptoms did you have before starting the patches

Following this as I'm about to go on patches

Yes I'm on patches. Pouch has been fairly ok, but a bit more windy then usual, but that could be the antidepressants that I'm on too. The joys of getting older ! 🙄🤪

I'm completing my first 2 months of hrt - 2 weeks evorel and then 2 weeks evorel conti. In Both cycles the transition between evorell and conti was rough - moods and hot flashes but in general it has really improved the situation. I am now crazy only 4 days a month 😉 Cant say it has affected my jpouch

I hope they let me try the patches. I’ve heard they sometimes don’t let you and you have to really push for it. Xx

Is anyone taking supplements for their menopause? I’ve started sage tablets and calcium & magnesium tablets

Hi Lizzy ... I’m on the Evorel 25mg patches of and the utrogestan (micronised progesterone) tablet in the evening. I did my research and for the safety aspect this has worked for me. I was able to explain to my Gp my rationale & decision for wanting this blend of HRT. A breast screening is important/mammogram before starting and regular Pap smears are a must. I’ll sent a link to a lady I follow who’s inspiring about menopause .. I hope you find interesting. Best wishes ❤️🙋‍♀️

I tried sending a menopause link to this chat but think I sent the link to the group ... apologies to all men 🤦‍♀️ Otherwise the link is lost in space. www.menopausedoctor.co.uk/

Thank you. And yes I’m glad it’s been a good talking point. It’s good to try and help ourselves feel better. No need to suffer when there are things to try and available xx

Yep! Marvellous stuff! Helps me to know when my aches and pains and moods are menopause or Jpouch or just middle aged!!

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4 days ago

I’m looking for a bit of advice from all of you catheter users out there...
if I wanted to try using one, what’s the best way for me to get it and be told how to use it? Thanks loads
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Are you referring to the ‘Medina’ catheter?

When I had my jpouch and had to cathertise the stoma nurse showed me what to do, I got them on prescription through hospital.

Hi Ruth Cox, Peter Flitcroft was my inspiration here, but I actually use a warm water enema, which I find less fiddly for me personally. Works a treat and has changed my pouch life!

I use warm water enemas like Ben, a simple empty Fleet enema bottle does the job nicely 😁

3 days ago

J pouch not working well after 15 years and need to choose a way forward. I have 2 options, any advice? I feel lost! ... See MoreSee Less

J pouch not working well after 15 years and need to choose a way forward. I have 2 options, any advice? I feel lost!

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Sad to hear Sarah. Do you have recurrent, persistent pouchitis? If so there is a clinical trial ongoing in the U.K. at the moment of a novel biological that is specifically being developed to treat pouchitis. Have a look at the Red Lion Group website (pouchsupport.org) if it might be relevant. Wishing you the best of luck

I didn’t realise there was options is jpouch not performing! I genuinely assumed it was a case of game over and it was time for the dreaded barbie-butt 😢 I’ve had Infliximab before as a last resort before bowel removal surgery. It went perfectly smoothly.., apart from the fact it didn’t halt the surgery unfortunately... but the process itself was simple and painless (for me at least)... my kids were very young at the time so it was lovely to have 4 hrs to myself to read 😂😂😂 Good luck, let us know what you choose xxx

Sarah Golding... can I ask how you know when your jpouch is failing? I’m 6 years since being fully in use (7yrs since creation) xx

Hi so my toilet visits are 16/day on last count (Thursday), iv had 3 scopes showing increasing ulceration and intermittent pain and bleeding.

Which does consultant recommend? I’ve been on both. They’re both good options. Main difference is Infliximab would be hospital infusions and adalimumab would be home injections. For ease I would choose the home injections and Infliximab could still be an option in the future if needed. Personal preference wether prefer to inject yourself for get an infusion.

One of them has Mice cells in it according to a doctor

I had both before surgery too and I was starting to notice improvement in my UC symptoms with both but unfortunately had reaction to both in the end so had to stop. I agree with Emma above that I'd start with the Humira injections, as it's more convenient once you start doing them at home, especially if you work full time and don't want to have time off for infliximab infusions. But at least that is an option down the line if the injections don't work or suit you.

Im a 8-10 times a day, peptac liquid helps me reduces gas with a cocktail of leperamide codine

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5 days ago

Hi has anybody had a hernia with their bowel entrapped within it how long did you have to wait for it be rectified and what pain relief where you taking in the meantime
Thank you in advance
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Hernia op on Friday. Mesh failed Saturday with pain and vomiting. back to A & E Sunday with gastric tube up the nose to stop the vomiting. Operated on Tuesday In HDU for a week.

I have had a parastomal hernia for just over 3 years and waiting for j pouch surgery they have said they will fix it when I'm open till then I have been given zapain seems to dull it slightly but still gives me lots of bother

5 days ago

As a new pouchee, Janindra Warusavitarne's talk last night was really useful and interesting to me. However it has made me realise that, having had my surgery done at a low volume centre, I don't have access to any support structure apart from reaching out to groups like this which are proving invaluable. Although I have no doubts about the quality of my surgery and the ability of my surgeon I feel I have no one who is looking after me which I'm finding really hard having previously had amazing support from my stoma nurses. Is this situation normal and common for new pouchees or do other low volume centres put some form of support in place even if they don't have pouch nurses? I'm finding these early days really challenging. I'd really appreciate any comments xx ... See MoreSee Less

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I find this as well as I have a pouch and crohns so I have 2 consultants who don’t always talk to each other

Hi - you can ask to be transferred to St Marks or a higher volume centre - it’s reassuring to have a team like that available.

I have been there a few times I hate the place , but looks like I have to go back there to get my stricture stretched they use a ballon .

I have a pouch and Crohns but fortunately my gastro and surgeon talk frequently x

I felt similar - my surgeon is interested but not really clued up. I think he realised that we’d reached the end of his expertise and referred me into the gastro team again. Luckily there was a new GI consultant who had worked at St Marks and really knows his stuff. Ordered a whole heap of tests to try and get to the bottom of my issues - and has really helped. So that might be a starting point - is there anyone in the GI team with expertise?

I'm very happy with the expertise of my surgeon but because they do very few j pouch ops there is no support care. I'm no longer under the care of the stoma nurses and there isn't anything to replace them. Is this to be expected or do other low volume places provide support from CR nurses, gastric nurses or similar?

Mine was done at a low volume centre and stoma nurse doubled as a pouch nurse at my hospital, I’ve had great support from her and my surgeons door is always open, I just give his secretary a call if I’ve any issues

Carole Garrett, i had my pouch done in a low volume hospital 16 years ago and was basically left to get on with it, no advice, no support. I moved away and then back again and have met an amazing surgeon who looks after me really well as far as he can. I have run into problems in the last couple of years so was referred to St Marks for second opinion and have since spoken to the pouch nurses there. They apparently are very happy to give support and advice to anyone with a pouch even if youre not one of their patients. So they might be of help to you x

I'm the same except my surgery was over 22yrs ago - I'd assumed it was the norm then - I've never had a pouch nurse or anyone to go to who I could talk about problems.

The red lion group is a great source of help and they’re based at St Mark’s. I’m also a SM patient and found so many people from the information days they have. Janindra is really good if he’s your surgeon, but so are they all 😉

Thank you for all the comments, it's really interesting to find out about different and similar experiences x

Carole Garrett... I am a pouch person but had ALL of mine done Lancashire and Manchester. But unfortunately am due further surgery. I've been referred to St Marks under Mr Warasuvartne. After reading your comments, am a shed nervous. My previous surgeon, aftercare up north was good. Any further advice. Am happy for you to PM me if easier.

Contact St Marks Hospital in London who will offer u pouch support

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3 days ago
Red Lion Group

youtu.be/I3gKKoepghE This week, the Red Lion Group zoom into summer series of webcasts was kicked off by Janindra Warusavitarne, Consultant Colorectal Surgeon at St. Mark’s Hospital, speaking on the subject "Through the keyhole – latest developments in pouch surgery". About 50 people attended via Zoom, and participated in the lively Q&A session which followed the talk.
A recording of the webcast is now available which you can view here.
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Don't forget, next Monday 10th May at 7:20 pm, Red Lion Group is hosting it's next monthly open forum. You can find out about all upcoming Red Lion Group open forums and webcasts and register to attend. pouchsupport.org/zoom-into-summer-series-of-pouch-webcasts/

Janindra Warusavitarrne once of top surgeon probably in worldwide 🌐

I missed the last one 😞 and I will miss Mondays

1 week ago

I'm new on here and nervous too. I have a j pouch and had it for over 20yrs. I developed a vag fistula not long after having pouch and it's got increasingly worse. I've had loads of surgery and have been passed to a surgeon at St Marks. His answer was either major surgery to remove and replace pouch with some webbing to heal the fistula and a temp ileo then reversal once healed..... Or a stoma! Im scared of both and frustrated at the lack of options. Its either extreme or can't be arsed. I don't want to give up my pouch cos its been really good to me. The fistula however can do one! Have you any suggestions??. Thanks... ... See MoreSee Less

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I joined a group called Abscess/Fistula Support for Women... There's lots of people on there with experience.. Perhaps not with a j pouch but could help regarding the fistula. Mine is anal so I can not really comment. Had it 5 Yrs now and it is draining!! (Literally🤣 and mentally.) Hope you get some answers and reassurance soon. Sending much love. X

Hi Alison, I have similar issues. Have you tried Infliximab? It successfully closed my fistula and I was ok for about 7 years until I had to come off it about 3 years ago due to a build up on antibodies (made it lose its effectiveness). Now the fistula is a huge problem again. The doc has just approved for me to go back onto Infliximab, saying it may work again after the 3 year break...I’m hopeful!

5 days ago

Metamucil, the psyllium based powder, that I use to regulate and reduce the acidity of BM is not longer available.
Do not know if this is a temporary rupture in stock or a permanent stop.
Any ideas of a placement?
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You could just use psyllium husk powder or capsules?

I use the the psyllium husk powder. Found that much better than the capsules. Usually mix it in with strawberry milk.

I eat gluten free now as my pouch behaves better and I noticed the bread contains this!

I am a new pouchee and have just become aware of metamucil. If no longer available where can you get psyllium husk?

Boots sell it

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1 week ago

Hope you all had a good bank holiday weekend! As it will likely still be raining on Wednesday, why not join the Red Lion Group people for a webcast by one of the most experienced pouch surgeons in the UK - Janindra Warusavitarne from St Marks Hospital. Janindra will be talking at 7.30pm on advances in pouch surgery, but there will also be the chance for you to ask questions at the end. Always an engaging and informative speaker; the event is free, you can dial in from the comfort of your own home and you don't need to be an RLG member to join in. Please register at pouchsupport.org/zoom-into-summer-series-of-pouch-webcasts/
Hope to see you there
Dvid (admin)
... See MoreSee Less

Hope you all had a good bank holiday weekend!  As it will likely still be raining on Wednesday, why not join the Red Lion Group people for a webcast by one of the most experienced pouch surgeons in the UK - Janindra Warusavitarne from St Marks Hospital.  Janindra will be talking at 7.30pm on advances in pouch surgery, but there will also be the chance for you to ask questions at the end.  Always an engaging and informative speaker; the event is free, you can dial in from the comfort of your own home and you dont need to be an RLG member to join in.  Please register at  https://pouchsupport.org/zoom-into-summer-series-of-pouch-webcasts/
Hope to see you there
Dvid (admin)

Comment on Facebook

Sharaz Khan

Daniel Russell

Pasqualina Rowan

Adele Turner

Hello! 😊 Would anyone be able to copy the link to the pouch review that was discussed during the webcast tonight? Forgot to copy it. Thanks!

Here you go Jenna Gardner. Thank you for excellent questions tonight: pouchsupport.org/portfolio/ileoanal-pouch-report-2017/

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5 days ago

Hey everyone hope you're all doing ok.

Just wondering what age people were when they had babies.

When I first had my subtotal-colectomy I was advised that I should aim to have children before I was 34. Just wondering if anyone else was told this?

Thanks
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I was never told this Sinead and had my surgery in 1997. I had my son in 2002, age 31, after 4 years of trying and 2 rounds of IVF.

Hey Hun, I was told to do so before my pouch and no way was I ready at 21 to have children. Once the diagnosis finally arrived of having endometriosis and finding out there were some fertility issues it made me start to aim for 30-31 and in the end I had Sophia at the late end of 28. I wouldn’t worry too much on age etc. Just when you guys are ready and most of all when you feel healthy (or the healthiest we can feel with our pouch etc) if you feel that there are any concerns see if you can have a GP referral to see a gynaecologist given the number of surgeries especially within the pelvic area and see if they can offer you any reassurance / advise on your pelvic organs etc. Big hugs 🤗 xxx

Hi Sinead, I had my pouch surgery in 2001 and had my son in 2004 when I was 35. I was advised to have an elective Caesarean and was monitored throughout the pregnancy with additional scans to ensure that the baby was growing well. In the end I had the C-section a week before full-term and he was a v healthy 8lb, 4oz!

I had my baby 12 weeks ago at 29 years old, I was never told this either.. just that I would have to have a c section. I just had extra scans etc - I think because of the Crohn’s disease this can be linked to low birth weight x

Hi Sinead, when I had the surgery in 2001 at age 25, I was never warned about the effects the surgery could have on my fertility until my partner and I decided to start trying for a family. Fortunately, I conceived very quickly at the age of 32 and had a c-section at 38 weeks with no major problems!

Yes I had surgery at 21 and knew at 22 my tubes were damaged and I would need ivf. Better outcome if you do ivf younger and I started age 26

I wasn't told an age but was told my fertility would be down by 50% so had a choice to try for babies b4 having the pouch but I was 24 and was not ready for babies so went for the surgery. When I was about 30 I found out after 2 years plus of not being able to concieve that my right fallopian tube was damaged by scar tissue from the surgery and I would have to have IVF. It was at this time I developed a vag fistula and couldn't have sex for ages. Luckily the fistula was removed and I was due to have IVF about 5 months later. The month before IVF was due to start I got pregnant! I was 32. Couldn't believe it. I would love another baby but due to being so poorly with a new fistula for over a year and still feeling no end in sight just can't try until my body is better. It's so frustrating.

My daughter got her pouch at 15 and fell pregnant by accident age 18 they said she couldn't have children without Ivf and they were so wrong I now have a beautiful 2 year old grandson x

Hi x I had my pouch made at age 22, was told scar tissue may affect my tubes, but was unlikely. The only thing I was advised was to have a Caesarian otherwise I may risk being incontinent if I tried for a natural birth. Tried at 35/36 to have a baby and was successful after only 4 months of trying. If course everyone is different, but that was my baby journey x x

I was advised to have children before jpouch whilst I still had stoma, but after 18 months or more of trying and realising we’d need to go down fertility treatment route I decided I wanted to get myself sorted first (mentally and physically - I hated the stoma!) and so had my pouch. Was never told an age - had my daughter via ivf a week after turning 35 and I’m currently 30 wks pregnant with my second at 38. Best of luck to you xx

Never told to have kids before a certain age. I had my first before I was diagnosed at 26 and my baby last year at 32 xx

Hi Sinead Mullen, I had the colectomy / pouch operations in 2004, then had my baby in 2008 when I was 28. I wasn’t given any restrictions / guidance on the age to have a baby. I was worried about the pregnancy and had extra scans but it was all fine. I had an elective c-section at 39 weeks, which was without any complications, delivering a health baby boy of 8lb 9oz 🙂 xx

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1 week ago

Good evening everyone!!

After my GP agreed to move my care from St Marks and referred me to John Radcliffe in Oxford. Only waiting two weeks from referring me on 14th April to JR hospital giving me appointment end of May.

Anyone at the JR hospital know if headley road site is inside the main hospital and is there plenty of blue badge parking. I am intrigued to see what consultant I get to be seen by. Have had horrible spell of pouchitis and extreme stomach pain since December 22nd.
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Good evening everyone!!  After my GP agreed to move my care from St Marks and referred me to John Radcliffe in Oxford. Only waiting two weeks from referring me on 14th April to JR hospital giving me appointment end of May.  Anyone at the JR hospital know if headley road site is inside the main hospital and is there plenty of blue badge parking. I am intrigued to see what consultant I get to be seen by. Have had horrible spell of pouchitis and extreme stomach pain since December 22nd.

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I'm at the JR on Tuesday, so will have a look out for blue badge parking for you. The parking there is usually pretty awful to be honest - my husband drives me in, drops me off and then leaves because trying to find a space is usually a bit stressful. We don't have a blue badge though. I'll let you know.

Assuming you will be in blue outpatients, disabled parking in the car park by the main entrance, but expect delays getting into the car parks - probably 5 years since I last took my car in there.

To be honest it’s a complete nightmare for parking. I only live half an hour away but leave 2 hours before my appointment because it can take so long to park. There are a lot of blue badge spaces at the far end of car park 2 and it’s a short walk to the main entrance but there is sometimes a very long queue just to get into the car park. It depends on the time of your appointment but afternoons are generally very busy. Let me know who your consultant is and good luck

What happened at St Marks? Here’s to full health <3

Why have you left st marks?

I was referred to St Marks in 2018, I have other autoimmune issues and liver team at Royal Free said, St Marks would address the pouchitis and pouch problems in depth. Unfortunately I never saw the consultant Mr Jenkins. His registrars would be my only point of contact, everyone offering different advice and some had terrible bedside care. I complained in 2020 around February time, and Mr Jenkins Secretary said he would personally take care of me now, this never happened and on December 22, 2020 I became extremely unwell with severe pouchitis, this is still ongoing and two weeks ago they cancelled the appointment and flexible sigmoidoscopy procedure one day before. The pouch nurse has liaise with my GP, but nothing in the way of getting to see Mr Jenkins. In the end my GP said I need to get into a more reliable care team. John Radcliffe hospital fits that plan.

Car park one is closed theres plenty of blue badge parking just make sure your badge can be seen, car park two is the best to park in don't think you can park outside now, all the disabled parking in two is nearer to the entrance which is level 2 I was there for my top and tail scopes on Thursday, who are you seeing? If you don't mind me asking, I've been under the JR and Churchill for 26 years now

Just to add if you have an appointment before 11 parking not to bad but after can be difficult I always see blue badge parking as I joke to my hubby I need one but queues to get there can be very bad good luck

I am going to be under Mr N Symons

Paul Sweeney I had my appointment at the JR yesterday afternoon. My husband drove me in, and it took about 10 mins to get from the roundabout entrance to the main entrance to the hospital. I hopped out at that point and left him to find a space. I think it took about 30 mins for him to get one. He said there is loads of blue badge parking just before car park 2 (it has it's own separate turnoff). I'd still leave plenty of time though, because you'll still get stuck in a queue. If you are taking the bus, there are plenty, and they pickup/drop off from just outside the main hospital entrance. I've been going to the JR and Churchill for donkeys years, and always use the busses rather than drive, but I was going in for an endoscopy and had to self isolate before it - jumping on public transport just didn't seem sensible!

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5 days ago

Does anybody feel there muscles weak and empty ... See MoreSee Less

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Yep, can't remember what is feels like to have strength and energy! 🙁

I'm the same but I'm sure crappy diet and lack of exercise doesn't help

Yes, it's cyclical with the B12 boosts, they don't last 12 weeks.

Yep, all the time, I take a multi vit daily but doesn’t seem to do much

Yeah part of life and getting older 😊

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6 days ago

Finally a j pouch on holby!!!first I've seen on tv ... See MoreSee Less

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Oooh I'll try and see that episode!

I will watch on catch up 👍

Thanks for the heads up Alan 😁👏

Thanks, I'll watch on catch up.

It's on last weeks.not sure if successful yet.forgot to add

I'll have to catch up.

What episode?

4/50.last Saturdays n continued sat just gone.

There was a chap who had FAP in the story line a few years ago in Holby but they only mentioned the FAP. I was very disappointed. I really wanted to see how well they were going to cover it

Spoilers please...I can't be bothered to watch it

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7 months ago

I've always been curious about how many j pouchers there are in the UK. It's impossible to find up to date statistics. ... See MoreSee Less

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Well, there's me 🙂 ......

I understand from Richard Lovegrove the consultant surgeon who is involved with the Pouch Registry that there are approximately 5,000 Internal pouches in England

I don’t know how true or up to date this is but I think I read somewhere that there’s 20,000 in the UK.

That blows mine out the water 😂😂 maybe ignore my comment!

I think they're a lot more common than we may realise. But since it's not particularly a nice condition to talk about, it's unlikely we'll find out just how common or rare it is. Would definitely be nice to see some statistics though. Might bring it up with my consultant.

Some of the older ones will be other designs of Internal Pouch, I think they are called S pouches and W Pouches and have more loops before stitching

The Pouch Registry is posted on the IA Support website. Two reports short and abbreviated and the full report. From memory this was written in 2016/17 and is the second edition. The third edition is in preparation and being funded by IA Support

Me!!!

Me

Its full name is the Ileal Pouch Registry go to the IA Support website, choose Internal Pouch and choose option on left side Ileal Pouch Registry, you can down load the 2017 reports. If you are really bored you can search and find my photo and pen portrait

Yes I saw on the official report it was around 4000 in the uk but this was a few years ago so probably more like 5000 now.

Yes that should be correct 400-500 per year for 2018 and 2019. I suspect very few in 2020

It’s a great question Donna Cusack, my guesstimate is 10,000. And growing by approx 350 per year. Many pouchees seem to disappear into the ether, presumably happy to get on with their lives and/or satisfied with their lot.

Me too

The statistics available for j-pouch are particularly poor. I read the whole 2017 report mentioned above but there was nothing on quality of life. So for people who are trying to work out what to do...they either have to go on what people say in online forums such as this (very helpful don't get me wrong) or just by their consultant (which we know can be hit and miss). Robust data is badly needed... in my opinion...so people can make a truly informed choice

The report was prepared by surgeons for surgeons, I agree extra work is required but this needs to be separately funded and commissioned

Me🤪

Me

As this group is uk ude hope we all are.lol

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6 days ago

Does anyone see a CRS at QMC in Nottingham? I have a j pouch and fistula and looking to potentially move hospital but wanted to see if there is anyone local who can recommend a surgeon ... See MoreSee Less

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Where r u

I’m at Queens. My surgeon is just retiring at the moment but have been introduced to his replacement and have heard good things. I have had dealings with several of the surgeons over the years (the fun of j pouch and Crohns) and some are veery good....others not so

6 days ago

Has anyone had biogenics to help fistulas or sinus tracts? Did it help? X ... See MoreSee Less

6 days ago

What are the brand names of those liquid iron supplements you can get over the counter? tx. ... See MoreSee Less

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Spatone

Solgar are good or feraglobin

7 days ago

Good Morning, I had my second Covid jab on Saturday & have been feeling awful 😢 everything just hurts including my pouch! Has anyone else had the same? 🥺 ... See MoreSee Less

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Hope ur OK o had my first it was OK bit tired x

Had both jabs, just had a aching arm nothing more

7 days ago

Going to see my crohns consultant today fingers crossed for answers to my pain and feeling sick , but I think I know the answer he always blames the pouch . I am due a pouch scope next week with deep sedation with my other consultant . Fed up with this!!! ... See MoreSee Less

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Good luck, where about is your pain.

Right hand side ,bladder , and across where belly button is

Same here its my iron and b12 I think I do have a stricture at the entrance 9f my pouch can't get camera in

Seen the first one he thinks it’s the stricture and entyvio is not working so after scope looks like it’s back to st marks or some one in London 😞

7 days ago

Hi I’ve had a J-pouch for about eight years now my weight is been fluctuating up-and-down potentially I want to be able to put on weight to gain muscle someone suggested calorie counting any advice ... See MoreSee Less

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