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

J Pouch Support Facebook Forum now on Red Lion Group website The J Pouch Support (UK Specific) Facebook Group, with
Clinical trial of a novel drug for the treatment of chronic, antibiotic resistant Pouchitis in patients with a pelvic pouch
Review of latest Pouch forum and register for next event on Monday 1 March 2021 Published 2 February 2021 The
A healthy love of walking turned into a more serious passion for rock-climbing for Michael Teanby thanks to the advice
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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4 hours ago

Hi I keep seeing adverts for food intolerance tests. Has anybody who suffers with pouchitus tried this and did it help? ... See MoreSee Less

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Would a tolerance test show up with pouch, if you're not intolerant but pouch gets irritated by certain foods? 🤔

The only thing that I know is pouch or no pouch eat it if it don't agree with you don't eat it But that don't say never try again

39 minutes ago

Anyone who has had cuffitis? Did you treat it successfully? ... See MoreSee Less

4 weeks ago

I have been suffering for the past few years with poor pouch function. I was at St Marks in Dec2020 and discussed having my pouch removed. I was advised to join the Red Lion Group and they advised me to join J- Pouch support. So I can talk to people who have been through this procedure. I would like to talk to people who have had a pouch removal, so that I can make the correct descisions for the future

Thanks for you help

Darren
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Hope you are feeling better... did you by any chance to Prof Clarke at St Marks?

I feel your pain Darren, i am in similar situation ☹️

I’ve had my pouch defunctutioned... not removed. Look I’m not going to sugar coat and say it’s better than a jpouch as that’s an individual decision but for me it’s not been bad at all. Pro’s and cons with each. If I could get the jpouch back I would but life isn’t bad at all with an ileostomy and certainly better than having a problem pouch

I’ve had my pouch for 13yrs. I’m in the process of having my pouch removed. I had it attempted in July 2019. But there was complications. I’m under St Mark’s now and waiting for it to be carried up. My previous consultant opened me up and found that my pouch was welded to my small intestines and was too dangerous for him to continue as he didn’t have the necessary theatre staff. I will be having the pouch removed at the same time as the stoma created. I was told the normally prefer to do the stoma in operation one and remover the pouch in second operation. Which for me isn’t an option

My quality of life was so much better with a stoma. I feel like I have colitis all over again

I am also interested in what people have to say. I'm currently on Infliximab infusions due to constant pouchitis and a fistula and recently a small bowel blockage due to inflammation. If this does not work then I might have to go back to a permanent ileostomy.

Sme here i feel like my UC is back

I've just had my gastro put in for a surgical consult to remove my pouch for a permanent ileo-ostomy with a barbie butt. I'm not looking forward. I have Indeterminate bowel disease. I'm on my second pouch. How do you get referred to St Marks? I had so many applications with all my bowel surgeries I need super stars. I have a shortened bowel and a tendency to fistulize.

I’m with St Mark’s and I’m going for pouch removal sometime in the near future. Sometimes living with a stoma is much better, as well as the quality of life. Make a list of pros and cons and sit back with a drink and read them 🙂

Darren Pagett have sent you a pm

Had my pouch excised December 10th. Had a J-Pouch since 2014 and had a few good years with it and quality of life was good, however then started to suffer with fistula and abscesses because of the pouch and after numerous Seton drains my pouch started to not function properly in 2018. Still recovering from surgery now as was more complicated than expected and had a further complication due to an infection so had to have stitched wound opened back open to drain and then heal naturally (with the aid of a vac dressing) but already feel so much better with a permanent stoma than I can remember being with my Jpouch for some time...if ever!

Darren Pagett Pasqualina Rowan Pritesh Shah Sophie Watts Aimee Wakelin Alex Large Chris James Defunctioned pouch here with continued inflammation problems, into removal discussions but with particular risks for me. St Marks too. I’ve been looking for similar others for a while so been very interested at all these comments. New to this group. Sorry for tagging people, hope you understand. No easy decisions at all, but it sounds like those who have had excision are ultimately better off for it?

Hi Darren Berman, i am currently in similar situation but have now made decision to have pouch defunctioned. Wasnt an easy decision but am now on waiting list. Am happy to pm if you want to chat x

I’m currently waiting on a MRI and surgical referral. It’s not an easy decision.

Is st marks private

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4 hours ago

Going back to bag Thursday after a long wait don’t really want it but things will be so much easier just hope I keep all my weight does anyone know if it’s open surgery or keyhole ?? ... See MoreSee Less

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Everyine would be different i guess but my surgeon has said it will be an open surgery for me xx

My daughters was open surgery but then she is tiny, not sure if that makes a difference, she had the pouch removed and a barbie butt and she has piled weight on since having it done. Health wise it was the best decision although not what she wanted.

I've gone back to an end stoma due to a leak in my pouch, was done keyhole so fairly easy compared to some of the open surgery I've had!

Good luck, it’s been a better option for me for general health but not without its issues and ongoing. Pouch may yet need to be taken out, but agree a stoma is better than constant ill health.

7 hours ago

Anyone have lower back pain on and off could it be inflammation from the pouch ... See MoreSee Less

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All aches and pains are life and getting older 😊 try not to keep worrying yourself everything is to do with your pouch as it won't do you any favours your be full of nerves and worry Live your life and remember to say and think to yourself you had surgery for better quality of life Plus your pouch don't rule you YOU rule it 💕

I’ve had a lower back prob for ages, but I’m also overweight so putting extra stress on my back generally. Like many in this group, my immune system has already demonstrated the ability to overreact (UC) so it wouldn’t surprise me if there was some chronic inflammation going on. I’m waiting for a knee replacement due to arthritis but both my brothers have already had knee replacements and neither of them has a pouch so I don’t think these things have anything to do with a pouch per se. How long have you had a bad back Pasqualina Rowan? Is there anything else that could be causing it?

I've got degenerative osteoarthritis in my lower lumber so yes get pain had it for about 8 years now but I put it down to the job I was doing not so bad now I'm doing something different for the same company pouch is 26 years old

I was diagnosed with ankylosing spondylitis at the same time as the one for Ulcerative Colitis. I was lucky I was looked after at the wonderful Stoke Mandeville. Despite having a colectomy in 1993 it haunts me to this day. Advice to anyone if you get back aches please get it diagnosed properly and avoid osteopaths. Please 🙏

2 weeks ago

Hello, my goodness me, I think I might have pouchitis??? I’ve called the doctors this morning, just waiting on a call back.
Last week I ate sweet corn 2 days in a row!wed/Thursday.. gosh by Saturday morning I was in sooo much pain so thought it was prob a blockage, but now I’m still in pain and don’t think it was a blockage after all! Feels like I have a baby inside me lol(I haven’t), the pain is crippling and like a pushing, so all I can think of is pouchitis?? I’m going for number 2 fine! Over the weekend was runny though (sorry) I don’t have bleeding and I don’t leek at night, do you think this is early stage of pouchitis??..
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Difficult to say, I can only go by my symptoms when I have a flare up of pouchitis and i usually am going more frequently with urgency, some leakage, stomach cramps, generally feeling unwell, headache, achy. It still could be a partial blockage, just seems a coincidence that you had the sweet corn. Hope you feel better soon.. x

It could be. Could also be rectal spasms, a fissure, Hemhorroids . I suffer with chronic, pouchitis. I have pushing/urgency/throbbing symptoms. It ‘smarts’ after I’ve been to the loo which is frequently, especially during the night. It’s watery / liquid. There’s sometimes blood, I worry all the time that I’m going to leak during the night because I often do. I’m awake during the night, most nights. Sitting on the loo (just in case, and worrying that I’ll make a mess, so I’ll get to and go and sit for a while longer.

Hi I have similar symptoms please let me know if you found out what it is.... Are you able to eat normally as I can only eat past potatoes and rice everything else gives me cramps etc

Jayne Hoskins i had very similar symptoms a couple of weeks ago and ended up in AandE in masses of pain. I had been passing small amounts but was completely blocked up. You can bypass a blockage and therefore feel like you are still going. Happens a lot in elderly people who are constipated! I ended up needing an enema and who knew just how much a jpouch could hold!!! Worth getting yourself checked out. Let us know how you get on x

If you have been sick might be a blockage that is what I have been getting. Try can of coke to move things along or peppermint tea. Otherwise you might need antibiotics if gets really bad I would go to a& e hope you feel better x

Do you get lower back pain with it x

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3 days ago

My iron is very low (again) and the GP has prescribed iron tablets which do nothing but give me chronic diahorrea. After months of taking them my iron barely increases. Previously I have had the infusion which is much more effective but the local community hospital keep rejecting the GP's referral, largely due to cost of the infusion, rather than what is best for the patient. The nurse has told me to complain, which I will. But it still does not solve my anemia. Has anybody had this before and how was it resolved? ... See MoreSee Less

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My consultant always refers me for my iron infusion - may be worth trying that route?

It may be worth complaining to your local PALS ( Patient Advisory Liason Service)

Aw sorry they refuse the referral. I too get infusions either referred by my consultant or GP. Am just waiting blood results atm xx

Similar issues. Agree about getting consultant to refer for infusion. Best solution for me is Sytron iron liquid, 500ml bottle on prescription. Can be in short supply sometimes. Or Feroglobin liquid, over the counter non-prescription, but iron content is far less than Sytron.

To be honest I just pay annually for my iron infusions. It's only about £350. The first time I was losing my hair and it would have all been gone by the time the NHS appointment came around

Can you speak to your ibd team? Your local hospital should be able to do it for you. Keeping 🤞 for you

Sorry to hear this Louise, am amazed that the local hospital would ignore the GP request. Some excellent suggestions already made above. In my experience it is important to make objective and well researched complaints. So there are 2 points to address, the issue of anaemia amongst pouchees and the improved iron supplementation by an infusion rather than a tablet. The best publication I have seen about a variety of deficiencies in IPAA patients is this one www.ncbi.nlm.nih.gov/pmc/articles/PMC3424428/#__ffn_sectitle The authors from the excellent Cleveland Clinic in US state 21% of IPAA patients have anaemia and provide a number of suggestions about why that might be. The second important publication demonstrating the improved anaemia with iv infusion vs oral tablets is here: pubmed.ncbi.nlm.nih.gov/19330567/ The situation is less clear here with later publications casting doubt on this but it intuitively makes sense in people with no large intestines that iron absorption via the gut would be impaired. This publication is in people with IBD rather than people without IBD so probably more representative of pouchees. Quote these in an objectively written complaint / appeal and you will be making a strong case. Best wishes, let us know how you get on

My GP is excellent and always takes a good approach at my issues as I was exactly the same I.e treat the symptoms rather than the test results, She advise me that , irrespective of whether I could be granted iron infusions for the rest of my life, that it would be better to try and address the issue of why I was anaemic in the first place. I used to have really heavy periods and (because I had had a DVT in the past) I was really hesitant to try other forms of contraceptive pill etc. In the end I gave a progesterone only pill a go and that didn’t help as I couldn’t absorb it properly. She finally convinced me to get the coil and did the procedure herself. Voila, my anaemia has gone and I now don’t get periods at all which is amazing! Anyway, point of the story is - do you know why you are low in iron? If it’s because you’re a woman then I would definitely look into what can be done on that front because no amount of green veg and tablets was ever going to resolve my low iron! Best of luck x

I take liquid iron and have with a glass of orange juice and then Vit c and folic acid. My levels get bk up very quickly

I had the same problem,my GP just told me to try and put up with it,which I did for some time but in the end I just gave up taking them which isn't good I know but it all comes down to money that the practice doesn't have.

Treacle add daily to food orange juice

Go through your IBD nurse or consultant..

Have you heard of spa tone a liquid iron try that

Do you get lower back pain weak leg muscles

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1 day ago

Anyone having trouble with b12 injection and pouchitis ... See MoreSee Less

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Just received my b12 last yesterday, do it set off Pouchitis?

2 weeks ago

I’ve had my j pouch since 2010 and I’ve been suffering with pouchitus last 4 years on and off, and this last time I’ve had it since last June, I can’t get into see my surgeon because of Covid so I’m left at home in agony and my pouch keeps getting more swollen it’s the size of a melon ....I sent a video to my pouch nurse and surgeon and they said it’s a hernia as well as the pouchitus it’s full of gas permanently....has anybody else had anything like this? I’ve been on long term antibiotics for last 4 months and it has slowed the number of times I’m opening my pouch but the swelling and gripping pains are getting worse I’m at a loss what to do.....they say the safest place for me is home away from Covid due to my weak immune system. I’ve been in bed months and can’t get downstairs most days I’m only 43 .....at advice would be so gratefully received I’m feeling very down and losing hope of ever getting better again, I was diagnosed with shingles last week which hasn’t helped things ....a high temperature and fever plus steroids not a great combo when you are already sad xxx ... See MoreSee Less

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I would be tempted to go to A & E with symptoms like that. Covid or no Covid.

The surgeon etc. need to see you I think, dont let them fob you off with the covid nonsense

The hospital I’m under is an hour away no pouch specialist at my local hospital. I’ve been told he isn’t seeing anybody face to face. I have asthma so I’m shielding all a bit of a mess. The nurse has been to fit me for a support belt for hernia but it hasn’t arrived yet .....I just don’t know what the right thing to do is feel very scared 🥲xxxx

Apparently I’ve had the hernia since 2010 I had no idea till 3 weeks ago I’m wondering why it’s taken so long to offer a support belt. The hernia is very close to my pouch so no chance of fixing it 🥲

I feel for you and hope you can find the care you clearly need at this time. Also your rmental well being is so very important too. I shall pray for you, hope that is ok.

I have found peppermint tea really helps but sounds like you might need antibiotics for gas I call my gp and get a prescription either cipro or mextronidazole

It’s the first time I’ve spoken to anybody else with a j pouch I’ve only just found the group so a massive thank you for all your advice xxx

It’s awful to read this and I don’t think it’s acceptable for you to be left in so much pain for so long, you sound quite unwell. I think I’d either be asking for a second opinion or at least speaking to my gp to get seen by somebody. Yes covid is a risk but I don’t feel it should be a reason to deny proper care for this. Which area of the uk are you in?

I'm so sorry to read this Lindsay. I appreciate that things are difficult with covid, but it really sounds like you need to be seen asap. I'm shocked that they have treated you like this and don't understand how they can diagnose you over the phone/video. I've had problems over the last year and even had a op to replace my seton. I have asthma too, but felt safe and the staff and patients were great with social distancing, masks and hygiene. Most clinics aren't running for general check ups, but the symptoms you're describing need further investigation. It's not fair that you are being left like this and in bed for months. Do they know how poorly you are feeling? x

I think you should definately speak to your gastro consultant. I have had my first, second and now 3rd pouchitis flare during lockdown. All has been done over the phone with a couple of camera procedures and regular blood tests to monitor. If you can't contact gastro, you may want to try your Trust's complaints department for advice as you need some clinical advice. In regards to diet, i have tried low carb for 20 days as instructed by consultant, Dietician said to leave it as i still kept bleeding with pouchitis i think, she put me on low fibre (although i rarely have over 15mg fibre a day anyway) she slso said no seeds, nuts, skins, oats and within a day or do bledding vastly reduced. I also tried lactose free and free from but she said to try 1 thing at a time. She isn't convinced pouchitis is related to diet. I hope it is as i can control that. I'm having increased blood again the last couple of days so back on cipro for 10 days from tonight - again all done by phone. I have made contact with a medicinal herbalist who thinks she should be able to stop the bleeding. I have started to drink fresh ginger tea and honey/tumeric/cinnamon with the hopes it will reduce inflamation. Some of this may help? Hope u get sorted quickly x

Great they are contacting you in still waiting on advice x

I think you need a scan to find out whats going on. I have a massive hernia but its not blocking anything. Hernias can trap the bowel in a worse case and swelling like that coupled with pain definately need looking in to as a matter of urgency.

For you gas try 7 up or lemonade or tonic water can get hint of lemon or lime also plenty of probiotic drinks or yoghurt Your hernia just don't go stretching and lifting and just rest it till you get to see someone

Hello lovely. Im sorry to hear what an awful time you are having. Reading this my reaction is you need urgent care, if it's getting worse day by day and you are unable to get up and down the stairs and carry out normal life stuff, that to me is urgent. I really think you should go to A&E, it might ge the last thing you want to do but it might be that you need intravenous antibiotics if you're already on antibiotics and they're not cutting it. I don't think you should leave this to get worse. I would take the trip. Worse case they do your bloods decide you're better off at home and send you away but least you've tried.

I agree with Amy and the others Lindsay. I was in a similar state last summer. No hernia but in a bad way with pouchitis and like you on all the antibiotics. My pouch nurse actually told me to come in to A&E as I think she realised I was dangerously dehydrated (vomitting and diahrrea 24/7 for months and huge weight loss). Even though I had the same drugs in hospital I had it all IV and IV fluids and I gradually got better. Covid was pretty bad then too but you NEED help. I'm with St Marks which is an hour from me but I got an Uber out of desperation. Minnie's diet suggestions are good advice. Keep off anything gas forming, onions, fiber and keep sugar as low as you can. O find i hydrate well from Zero hydration tablets in water. Don't be afraid to keep asking on here. We're here cos we've all had our rotten times! X

Sarah Donovan im struggling with a stichler and inflammation my doctor keeps saying you will be fine your bloods are good but biopsy tells diffrent so I. Home waiting for treatment 9 days to ho new surgeon hope he helps me I keep Dehydrating tummy cramps and avoiding all sugars as they make ne feel worse x

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3 years ago

Does anyone suffer pouchitis or cuffittis and anaemia feeling weak x ... See MoreSee Less

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Had it constantly in the last 3 years of my 13 year history with UC. Had to have my pouch removed last July, it was killing me.

It's horrible Jackie I don't no anyone around my area wi th UC I struggling every day see a new surgeon on Monday as my surgeon retired x

I too have constant pouchitus and anemia. I’ve been on Cypro and VSL for the last 2 years to try to manage it. But they have. Is found other issues which may mean the removal of the pouch ☹️

Iv no appetite feel worse after I eat

2 months ago

Can you still have pouchitus if your pouch has been disconnected? ... See MoreSee Less

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Yes I still got problems with mine so now have a Barbie butt.

Yes mines is disconnected be good to chat x

Yes the mucus can stagnate and cause inflammation. Use an enema to flush it out.

Did you try irrigation?

Is your pouch eventually going to be reconnected? I had a stricture after stage 2 and was given a dilator to keep it open. A small anal vibrator will work just as well but need plenty of lubrication.

What symptoms do you get with stitchler and inflammation of the pouch

No that’s mucus. Most people never get pouchitus

Do u have b12 injections

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2 days ago

For those of you that take psyllium husk powder... how do you take it and how often? Thank you! 😊 ... See MoreSee Less

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F

What does it do please?

I prefer the powder to capsules as it seems to work better for me. I have 2tsp in water at least once a day. The texture leaves a fair bit to be desired but it’s worth it.

2 days ago

Just been told I’ve got inflammation I’ve got a j pouch my nurse has said the inflammation isn’t in my pouch but has given me salofalk enema has anyone had these before with a j pouch ... See MoreSee Less

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Is it in your rectal cuff?

I have used Salofalk enemas after the jpouch creation and before my takedown because i was diagnosed with proctitis. When the proctitis went away (after almost 4 months od using enemas) my surgeon made the takedown but i am still on salofalk only suppositories now. I know the difference between enemas and suppositories is that the enema heals the inflammation in upper part like the J and the suppositories the lower part closer to the anus. Amy Hirst

2 days ago

Anyone on long term antibiotics do you get thrush or acid reflux ... See MoreSee Less

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Everytime I get a prescription for antibiotics I have to get one for thrush too! Always suffer this side effect😔

2 days ago

Do antibiotics work with disconnected pouch ... See MoreSee Less

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Yes.

Potentially yes but always depends on the cause. Various ones that used to work when connected no longer do that it’s disconnected.

1 week ago

Advice needed Friday night I started with bad pains and cramping. Some of it is trapped wind as it was gurgling around but my out put is now very little.
I've been drinking loads and only having little bits to eat like yogurt. I've managed to get some wind out but I'm in a lot of pain still. I've had this b4 but not as bad. Do I ring 111 and try and see a out of hrs doctor or leave it. Don't fancy going to hospital with the current covid situation.
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Sounds like a small bowel blockage. Don't eat anything, fluids only. Try drinking coke. If you vomit you must go to hospital xx

Might be trapped wind Anita, in which case I'd recommend Buscopan. As Helen Bufton has said, if you start vomitting then I suggest you call 111 but be prepared for them to not know what a pouch is. Have you changed your diet in last few days or eaten apple peel or lots of raw veg etc? Apple peel is an amazingly powerful gut-spasm inducer. Hope you are feeling better soon.

Sounds like a blockage. You need lots of heat - hot bath, heat packs/water bottle, some walking or yoga to get things moving. Try child’s pose it’s been amazing for me over the years and downward facing dog. Drinks loads! Especially a Coke and some fruit juice. You can also have a shot of lactulose in some fruit juice or something with magnesium in to push it through. Peppermint tea hot or cold is a gods send and simethicone tablets for any gas. Don’t eat any food at the moment then go on to liquids and soft food. X

Thanks everyone ur tips helped. Feeling so much better now. X

Hi Anita. Glad you feel better but I agree with Helen, if you start to be sick go straight to A&E, don't bother with 111. I've had several bowel obstructions due to adhesions. Don't worry about the Covid situation, they'll have protocols in place to protect you.

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1 week ago

I’ve noticed over the past couple weeks that milk seems to worsen my output a lot. I was wondering if anyone else has this problem and what alternatives they use? ... See MoreSee Less

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My pouch doesn’t like milk, i drink yogurt with no problem

Can't drink milk but ok in tea I eat yogurt but it's not a shop bought one and have soya milk on my cereal

I don't have any dairy or meat. Gave it up nearly 3yrs ago

Milk and yogurts makes me so shivery iv had to cut it out just now and sauces im having pouchitis flare up hope it settles soon

Yes, I became lactose intolerant about 20 years in with my pouch, now have lactose free dairy or goats milk.

I'm ok with milk doesn't seem to bother me 💁🏻‍♀️

Yep, most dairy products loosen mine too!

Soya or almond milk , cows milk is a killer for my output

Milk or any dairy goes right through me and will cause night accidents. I use KoKo milk mostly. Sorry to hear this affects you too. There are so many good dairy free alternatives now. It’s quite exciting x

Anyone with acid reflux

When I suffered with UC I could not have milk or cheese , it would cause a flare up . Even now with a jpouch I can not have milk , it goes through me but I'm able to have cheese .

I have oat milk or soya, much better on the pouch I find x

I try to make sure I never have milk or dairy that's gone out of date or is off; ,otherwise pouch copes ok.

I actually discovered I was a bit lactose intolerant and milk does make me go more frequently and make me spotty. I've swapped out for alpro milks which I now really enjoy considering I was basically addicted to milk before (c. 3-4 pints per day). I have hazelnut, cashew, vanilla and chocolate alpro milks. The hazelnut and vanilla make good hot drinks and the cashew is a nice sub for milk in cereal etc. And chocolate... Well that's just dank 😂

Anyone ferl sensative to foods due to inflammation

Try long life milk

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3 days ago

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1 week ago

Hi all im hoping you can help... for the past week or so my evenings and nights have been rough. Im grand until about 4/5 o'clock but then im living on the loo. Going every half hour to an hour small amounts I feel a bit stuck. Sickly tummy sore legs. I've used warm water enema imodium but nothing is helping any clues?? I was going 6-10 times now its 10-15!! ... See MoreSee Less

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You might need to use the medina catheter to go with the warm water irrigation.

Sounds like pouchitis, you could try a finger scoop of good quality Manuka honey dissolved in your warm water enema for a natural direct antibiotic effect to your pouch. I do this if ever my pouch feels off and it’s all good again within 24 hours. Failing that seek medical advice x

A couple of potential solutions above Clare; sorry to hear of these problems. Have you changed your diet recently or noticed any blood or unusual smells? If it doesn’t improve then contact your doctor or pouch nurse (if you have one) as you might have pouchitis. Best wishes for speedy recovery

6 days ago

Has my pouchoscopy yesterday after 2 years biopsies taken awaiting results GI saw moderate pouchitis ... I had no sedation or prep it was uncomfortable but not unbearable .... however after a long while I had some leakage last night... should I be worried? ... feeling urgh ! ... See MoreSee Less

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Sanita, almost certainly your pouch is protesting against being messed around the day before. I would hope it will calm down over the next day or so. May I ask what the biopsies were for and whether there is an underlying problem which might explain a deterioration in function? If not then I would hope this will improve quickly. Best wishes for speedy recovery

1 month ago

Any engineers / manufacturers out there want to design a disposable back of toilet bowl cover, for the bit under the seat above the main bowl. Because I'm tired. It's actually impossible for me to keep on top of cleaning my toilet with my machine gun pebble dash j pouch ... See MoreSee Less

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You can have the idea for free I just need the product

I’m with you bud, seems I spend half my life cleaning toilets!

I start with good intentions wiping it off each time but after one bad night it's all caked on and I just.... Looks like I haven't cleaned my toilet for three months after about two days 😂😭

If you had a wife like mine who can spot a speck of shit from a hundred yards 🕵️and bollocks you when she does it motivates you to clean it every time😂

If the plastic cover idea doesn't come through I'll start looking for a wife

When the neighbour comes round for a pre-covid cuppa and goes for a wee..... 😳

solidarity on that

I read this and thought it was on the builders advice page I’m a member of 😂

My other half is very understanding of it and has never once complainted yet when he leaves "landing lines" I hate it and I can't complain about it because I'm worse and he never complains. I get embarrassed when he cleans the toilet and its my mess. I got a Japanese toilet which is rimless hoping it would help... Nope still have to clean it every time even if you turn it on jet the whole time. Get the fear when someone comes over and panic is it clean or not.

My husband is amazing and seems to always be cleaning the toilet after me... I'm not sure it was in his vows! I think I've done it myself but sometimes as Scampi says.. it's just caked on (how does that even happen?!) and it can take more bleach and elbow grease than I've got energy for!

I fill a plant spray bottle with a weak fabric conditioner and water mix. Spraying the loo thoroughly after each use stops the poo from sticking and it's much easier to clean as well as smelling better

Tip #1. If possible have your own toilet! I guess I’m lucky there, and woe betide me when my wife catches me using a different one. Tip#2. I actually have a toilet seat from Costco (if they still have them) that very easily clicks on and off. Makes cleaning those difficult to reach places easy! I empathise with all the sentiments noted above!

I think this is it ....note the "quick release feature"

I feel that pain

What if we all got brown toilets? 🤔 When you think about it, white is a stupid colour for a 💩 bowl

Just embrace the pebbledash. I have. My wife disagrees though unfortunately. 😂

Hi Scampi .Did you find an alternative toilet seat? I got my mum one to that lifts off the toilet completely. She doesn't have a pouch but I do. It's brilliant for when I visit. I'll have to find out what make it is. Got it from Homebase.

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1 week ago

Hi....
My son (18) thinks his pouch is failing...he's had it 2years now ans.he's struggling to hold poo in, he has bad pain when he needs to go and the pain is the same when he tries to hold it in. He says it's like really bad muscle spasm. He's had a few accidents.
He had the covid injection nearly two weeks ago but I'm not sure it's got anything to do with that other than he had really loose bowel movements for 4/5 days after. What do you guys think.? We're phoning. Newcastle tomorrow to talk to his consultant. It's been off since covid injection, but now so much worse.
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I had that. Was just inflammation of pouch. Sorted with antibiotics. So hopefully it’s that simple. However, only consultation in long run will confirm.

I’m thinking it isn’t failing... I’m thinking he might have a bit of inflammation...tell him try not to think the worst and speak to his consultant or surgeon I’m thinking a two week course of antibiotics and he’ll be good as new 🤞🏼 x x

Does he feel weak i do ip and down x

David you’re normally good with advice and putting peoples mind at rest... well you’ve helped me in times of trouble... Any ideas..? X x

Pouchitis? I had covid vaccination and had urgency for few days after starting to settle. I use probiotics which helped settled my stomach . X

I’ve had mine since 2016 and I always get really painful cramps when I need to go. This is normal as it is the pouch trying to empty itself. I’ve structured my eating to fit my lifestyle/work to limit the times I get these cramp like pains. Hope this helps?

Hi, I have similar things at times (pouch almost 5 years) where everything feels tight & with the cramps. Things I’ve tried that help are loperamide (tablets not capsules), buscopan & ibuprofen (just on occasions not all the time). The game changer for me in this last week has been co-codamol, I started taking 2 8/500 tablets on a night- stopped night time trips straight away and has reduced day trips to 4. The last couple of nights I’ve only taken 1 tablet which gave the same result. Obviously this is just my personal opinion and not medical advice. X

It sounds like Pouchits to me.

A course of cipro will help settle things down

Thanks guys ... the consultant thinks it is pouchitis and has prescribed antibiotics. I love this group. You guys are ace

Yep, makes a lot of sense. Two weeks antibiotics then a week or two of live yoghurt to help reestablish a healthy and balanced pouch bacterial flora. Some people use Vivomixx (used to be called VSL), but it’s expensive. Any live yoghurt should help. Best wishes

Thank you for tour kind words. I love this community too

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6 days ago

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