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

Important update for Medina Catheter users A significant number of J pouch owners use the Medina Catheter to assist with
Review of latest Pouch forum and register for upcoming Forums and webcasts Published 10 June 2021 June RLG forum –
Zoom into Summer series of Pouch webcasts 2021(Updated 15 June 2021 to latest webcast recording) Following feedback, with effect from
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.

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Pouch Support Facebook Forum

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2 days ago

Hi guys,

hope you're all well. I wanted to ask if anyone has a stricture or has had one in the past, how did they treat it and what procedure did you have done? I literally can't eat anything apart from chicken and lamb which has to be soft, I can't eat most vegetables and fruits, and the ones I can eat must be boiled and very soft, I love nuts and I can't eat those either. I'm really missing eating veg food especially my mums cooking, I really want to eat my favourite chocolate bounty too but I can't 😭 I am currently awaiting for an appointment to see my surgeon who performed my j pouch, I've been waiting for months 😒 I had to chase it up only to find out that they hadn't sent my report over to my surgeon nor to my doctors which is appalling considering the fact that a stricture is a serious thing to have and not something to ignore 🙄 this has been going on for ten months and I'm still suffering with stomach pain, being sick 🤮 and getting blocked up, I feel as though my stricture has gotten narrower and now it doesn't matter what I eat it's very uncomfortable I get stomach pain 🙁 just want it sorting out now, I'm fed up of waiting and not being able to eat anything!!!
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Strictures are the worst 😢 I suffer with these. I feel you I miss certain foods so much. So frustrating when you are waiting to hear something back from your surgeon. Have they mentioned surgery to sort the structure? I understand, I’ve thrown up my actual bowel contents a few times 😰 Big love ❤️

Neeta I’ve suffered with strictures a few times and after having to have an anaesthetic each time to stretch it out I now have to self dilate at home daily otherwise it starts to close within days no matter what I eat.🤦‍♀️ x

Hi Neeta, have you had a pouchoscopy? It’d be good if they will do that to get an accurate impression of the problem. xx

I have 1 I had it stretched with a ballon a clod years ago at st marks but it needs done again waiting for a appointment. I do watch what I eat and something I have to do liquid only .

Neeta, I have been in a very similar situation all this past year, I had a dilatation because of a tight stricture but I still need to use a dilator and a catheter to eliminate the stools as my jpouch does not do it anymore without the help of AquaFlush which is a water enema and catheter. I am down to three times a day after the main meals and an occasional extra catheter when I feel the need. In between I feel like my normal me of the past before needing dilatations! I can feel my opening narrowing again and possibly will need another dilatation by October. But with the help of catheters and AquaFlush I have been able to eat a little more of my favourite vegetables and salads as long as I chew a lot. It is amazing how the catheter helps me and I now some people don’t need both enema and AquaFlush but unfortunately I do. I am now so worried as it seems the catheters might be discontinued in the near future!!!!! Hope you lo feel better soon and solve your problems☺️

I miss chocolate absolutely, things will improve for you. Slowly introduce what you like, as you start to feel better. I always keep a diary of introducing and excluding as I start to reclimb the food ladder. Good dietitian will help! I been in and out of hospital since November 2020, lost 3stone. Gave up eating and suffered, the dietitian come into their own.

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2 days ago

Hi guys, thank you for getting back to me, much appreciated 🙂❤️ ... See MoreSee Less

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I honestly think sometimes posts get missed. I hardly see any of these posts at times.

So sorry to hear that you’re feeling this way Neeta… unfortunately i haven’t had experience dealing with a stricture but sending you positive vibes and hoping you get it seen to as soon as possible … what about going to see someone privately if possible? hugs x

I'm sorry I never read ur post or saw it.ive been at work n not long been home.but found it now.and yes I have had stuture/adhesion.

N I'm 38 too lol

Sorry Neeta. I missed your previous post about strictures. They are very common after j pouch surgery and are usually caused by scar tissue round the anastomoses. The treatment is dilation . Either by the surgeon under LA or GA or self dilation at home.

Neeta Chatwani - just to confirm for anyone reading your post that this is a popular support group from which many people find comfort and strength. I am sorry your posts have not been answered but members are under no obligation and answering is voluntary. I hope you will continue to be a valued member of the group and to contribute questions and comments to support this excellent community. And I wish you the best of luck in getting seen quickly and having a dilatation procedure (if indeed that is medically indicated). We have heard recently on the RLG webcasts of operating waiting lists growing due to covid, which is understandable but of little comfort to people such as yourself who are waiting for a procedure. Best wishes David (admin)

Don’t lose faith, help should be available via your pouch nurse etc. People can only help if they have experienced your problems. I am currently back in hospital for 2nd time with autoimmune hepatitis and PSC, another thing sent via UC route. Keep fighting and don’t give up

Does your hospital/consultant do a lot of pouch procedures Neeta Chatwani? If not then you might benefit from a referral to a more experienced centre such as St Marks or John Radcliffe where there are specialist, multidisciplinary teams for pouchees. Have a read of the ACPGBI pouch survey published in 2017 (downloadable from the RLG website pouchsupport.org) for the higher frequency centres for pouch operations and look to see if there are any near you. You can ask your GP or consultant for a referral at any time if you are not happy with the care you are getting. You might benefit from joining a support charity such as RLG or Kangeroo Club in Oxford or the pouch sub-group of IA which are excellent support networks. Are you already a member of any of these? Your symptoms sound dreadful and if they are getting worse then you must find the strength to get this resolved. The NHS isn’t always perfect and one can appreciate that covid has stretched the system and led to the diversion of resources but that just means you need to redouble your efforts at a time when you least feel able. As your symptoms are getting worse (vomiting is not good) then you could try leaving a message for the pouch nurse specialists at St Marks who are grossly overworked but have said they will get back to every caller who they can help. The details are online if you Google “pouch nurses st marks”. Best wishes, hope this gets sorted soon.

It really depends on how often people visit this group as to how often it will show up in their news feeds. A lot of the time, Facebook priorities their friend's posts and other groups they visit more regularly. People need to visit this page in order to see posts so don't be surprised if it takes a while for someone to post something 🙂

I’ve just searched your previous posts and I see lots of comments! I have a stricture and regular dilations is the answer, in hospital and then self dilations at home. Warm water enemas, pouch irrigation is a massive help to empty pouch properly too

Pm me if u ever need to talk xxx

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5 hours ago

Anyone have trouble with iron and b12 deficiency x ... See MoreSee Less

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Not officially but do get tired quickly. Taking iron and B12 supplements these days. Started oral spray from BetterYou (Did find out I was anaemic last year but not pouch related)

Yep! Have b12 injections every 10 weeks and iron is becoming an issue. Have blood tests regularly and infusions when required x

Yes I was severely anaemic at my last blood test. I’ve had an iron infusion and have now started taking soluble iron supplements.

Have B12 jabs every 12 weeks. Currently waiting for blood results from last week's hospital visit, I am tired 24x7 now.

Yep injections of b12. N folic acid

B12 injection every 12 weeks and iron infusions every 8 weeks(ish).

Yes iron infusions for me are the only way

I take iron tablets and have done since after my surgeries, also I have low B12 and need my shots every 6 months but because of covid I've not been able to have them done, definitely makes a difference though 💁🏻‍♀️

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3 days ago

I’m struggling mentally and I’m being honest I have a love/hate relationship with these groups.
(Sorry if I offend anyone) 😢

The truth is I’m lost. I’m 38 and had j.pouch 10 years and I’ve hated it and I’m poorly all the time. Constant pouchitis, blockages, fatigue and bad joints.

On the waiting list for a permanent stoma and “barbie bum” but I’m so scared because my past surgeries went so wrong.

I wish I had a crystal ball and it would guide me but I just feel stuck in the world of pain.
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Oh dear sorry to hear this all I can say is your going back to the bag and life will resume back for you just stay strong and healthy as you can be The light is nearly there for you x

I’m the other way round waiting for j pouch however I had a really bad time last op so I know how u feel xx

You sound so much like me. I am fighting against the surgery, due to problems before but getting too tired to fight. Xx

Hi Abby I have private messaged you xxx

Hi Abby. I’m sorry to hear that you’re struggling so much mentally right now and it’s totally understandable that you are. I can imagine that almost everyone on this group has found it hard mentally with everything we have gone through and are still going through. I realised after reading an article that I had symptoms of Post traumatic stress disorder as mine was also an emergency surgery, like you. I wonder if you’ve spoken to a councillor at all? I found it helped a little. They can’t stop the crap stuff that’s happening but it’s a space to talk about it - especially when there’s not much time for yourself with 3 children. I’ve got children and often pretend everything is fine for them and you can be honest with a councillor. Mine was over the phone and I knew I’d never see her again so could talk about the embarrassment of poo. Let me know if you ever want to talk. I know what you mean about these groups because people come here when they have problems but no one else can really understand what it’s like except other pouchies!! Be kind to yourself 😊 xx

I would agree with the above comment about seeking some help from a councillor or similar. I have a jpouch now which is working fine luckily but I had a horrible time with multiple surgeries to get to this point and I hated everything about my body/scars/stoma etc. Just felt really down and a bit ‘poor me’ as at that point I didn’t know anyone else that had gone through it. It really helped me to talk to someone that didn’t know me and I could be really honest about how I felt and find my way through. Best of luck to you xx

J-pouch surgery isn't for everyone. It's OK to go back to a bag. The main thing is that you're well and healthy - both physically and mentally. Do whatever it takes. I wish you well. Xxxxx

In a similar shituations with a 25 year old j pouch <3 so much love and empathy incoming you are not alone xx Please feel free to message me xx

Oh bless you, I hope things will get better for you and you have your surgery soon, it's never easy but it will get better, stay positive hun and good luck to you, sending lots of good vibes and love your way ❤️

Crumbs you sound very low Abby. Have you tried counselling (as mentioned by others here)? What about talking to other pouchees who have been through similar? In my experience it helps to talk and to know that others have faced and overcome similar set backs and that you are not alone. Have you considered joining the RLG pouch forums on the first Monday of the month? Pouchsupport.org Best wishes David (admin)

Some people say having a permanent bag gives them their lives back so maybe that’ll be the case for you too Be positive you’ll get your op soon and hopefully feel better in yourself Good luck xx

Hi Abby, me again! I’ve reflected on your post and offer a few more comments. I cannot offer comments from a position of experience as I still have my pouch and it works ok, but I do recall comments on this topic in the past which might be relevant and provide some reassurance. Firstly have all avenues been explored to address your pouchitis? The admins have published here (and there are details on the RLG website) of a clinical trial ongoing in the U.K. of a new biological medication which is specifically being developed for the treatment of pouchitis. Have a look and see if it would be of any interest / relevance. When you had your original emergency op you would probably have been very poorly and not in great shape. I’m guessing you are stronger now (in spite of ongoing problems) and this will help to achieve a speedier recovery post op. The second is that the double-barrelled stoma you probably had after your first op tends to lie flatter against your skin than a permanent stoma which has more Of a spout. This can lead to lots of problems post op. I hasten to add I am not medically qualified but just going on comments from others over the years. Anyways the problems you might have had with a double barrelled stoma might be less likely with a permanent stoma. Lastly, as already mentioned by you and others, if a permanent stoma resolves long term problems and gives you back your strength and good health then it might be your best option. Keep in touch, let us know how you get on x

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4 days ago

Don’t eat your body weight in Bombay Mix ... See MoreSee Less

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Same goes for roasted sweetcorn but it's hard to stop!

I’m into honey roasted cashew and peanuts at the moment. Strangely my pouch is ok with that but I get blockage and bloating with the plain nuts. I will just have to stick with the unhealthy versions

5 days ago

Not J pouch related, I have one but am asking this for my partner, who is a long term sufferer of chronic constipation due to lazy bowel, long colon. Its been going on for years...and they've been passed from pillar to post with no answers other than laxitives. Any suggestions or recommendations for consultants specialising in same. TIA... ... See MoreSee Less

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Where are you based

Diet he needs probiotic and lots of water and lots of life culture

Your partner might find this group helpful. My Mum has an ileostomy due to slow transit bowel. The group is for people with slow transit regardless of whether they have an ileostomy or not. Having witnessed my Mum struggle for many years I know how distressing it can be and the impact it has on day to day living. www.facebook.com/groups/299109037562360/about

Would that not be idiopathic mega colon.cos that kinda similar to my issue.part of my colon had stopped working

3 days ago

How long did you feel weak and rough for after stage 2 surgery? ... See MoreSee Less

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Aw I can’t answer this . Sure someone can for you , have you had the surgery or awaiting! Xxx

Once I’d got over the ileus and got home and eating a bit more I got my strength back pretty quickly. Stage 2 of 3 was open surgery for me and I started to go out for short walks at about 3 weeks post op, felt really good at 6 weeks x

I found Op 2 harder to recover from than Op 1. Certainly took me 6 weeks to start feeling better. X

It’s really hard to say…..some people are quick, with me it was 8 months to a year. I really hope you make a quick recovery ♥️

3 days ago

Hi everyone, I posted on Monday about a blockage and I tried everything you guys suggested and slowly things are moving again so thanks so much. The only trouble I am having now is I don’t really feel the urge to go, I can go and push it out (sorry if TMI) but normally I get the urge to go lots. It’s day 5 today so not sure whether to leave it a few more days and see if I go back to normal or to ring docs today. I don’t feel poorly and I am not in any pain at the moment. What are your thoughts please?
Thanks so much xx
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Have you been at all or you’re not just getting the urge? You are supposed to relax your muscles to go and not push (but yeah do that to sometimes!). My instinct is If you are not in pain and going okay I’d leave it for a couple of days.

Leigh I’d suggest you enjoy this time, if your not in pain and you are still passing then don’t worry, it will get back to normal soon

4 days ago

Hi all! Every so often I get loads of these little bumps come up on the sides of my fingers that look a bit like tiny little blisters or worts. They are a little sore to touch but other than that cause no problems and dissappear after a week or so. Just wondering whether these are maybe jpouch / ulcerative colitis related? Thanks 😊 ... See MoreSee Less

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Interesting, I’ve had these! X

Dyshidrotic eczema X

My daughter has a pouch and she gets that on her fingers. We don’t know why ? X

It’s clears up with daktarin cream from chemist

I get this and always wondered what it is!

Yes I’ve had these. I also regularly get a larger wort type lump on my forefinger knuckle which goes after a week or so. Painful and itchy. No idea what that’s about but I call it my carbuncle.

I get these too I've got FAP

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1 week ago

My daughter had her reversal 3 weeks ago and over the last two weeks since pouch has become active she’s barely managing to sleep. She’s up to the toilet 3/4 times a night but struggles to get back to sleep, she also suffers terrible trapped wind. Her consultant reg today prescribed Imodium to help slow bowel movements we hope. We are just wondering if anyone else had similar issues with sleeping and trapped wind. She’s only 16 and spent the majority of the last year in hospital with pelvic sepsis and a large wound which still hasn’t healed. She’s lost 6 stone and desperate to gain weight and under dieticians, she also has psychology input. We desperately need all positive advice possible as my daughter is absolutely fed up. She knew it wouldn’t be easy at first but didn’t expect to feel this exhausted. ... See MoreSee Less

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Sounds normal from my experience, sorry... But it does get better, i rarely go to the loo at night now but I'm 7 years out. It is hard but tell her it will get better, 3 weeks is very early xxx

Start her on the imodium asap, I take 2 in the morning, 2 at lunch and 2 at dinner well I'm not taking them like this anymore as I've calmed down. My first couple of weeks at night were the same but will calm down. The wind is a bugger, I struggle with this but tell her to lay down and relax the wind will release and maybe so mint capsules to help calm the wind... It's a tough ride I admit but she will get there xx ❤️

I try not to eat after 6pm which does help. White boiled rice is also my saviour. Everyone is different, I hope she starts to feel better soon.

My daughter was 17 getting her pouch x Keep a food diary, no fizzy drinks and avoid anything that would normally make her gassy. Grace takes Imodium x

Trapped wind would contribute to night time toilet trips. What about trying Buscopan to help release the trapped wind?

I am up 3 to 4 times a night sometimes and take immodium. Very rare I don't have to get up. It is hard to get back off to sleep sometimes. I've had mine 9 years. Marshmallows can help slow things down. You get used to it and accept that that's how it is. Hope she feels better soon. Shes young to be going through all this but it does give you your life back. X

3 weeks is very early it does get better. I take Imodium at night 20ml and also charcoal tablets and windease for trapped wind. I also don’t eat past 7pm. Peppermint tea is also good. I’m 18months post takedown and still get painful wind now and then but it has got a lot better. Just stick with it, it’s hard but it will improve 🤗

Things with gelatine in will thicken out put marshmallows etc white carbs and windezz for wind also ask doctor for codine phosphate this should slow down out put

I also take 10mg of codeine twice a day

Is her iron or b12 low get checked out A bacon room picked me up after my big surgery

You poor things. It WILL get better xx I agree with trying Buscopan and Codeine - in addition to slowing Bowel the latter will help with any pain and also help with sleep. Also agree with drinking peppermint tea. You could try taking some psyllium husk powder - I felt this really helped in early days but have stopped now (a year out) as although it thickened output it did create more. Stick to a really bland ‘beige’ diet for now until things settle. Hope she sees some improvement soon but it is v early days xx edit - Just seen insoluble fibre helps trapped wind so it’s def worth experimenting with psyllium husk powder - a teaspoon in drink or yogurt

As everyone says it’s very early days.It must be so hard for you watching your daughter.Sounds like she’s been through so much.I personally found the 1st 6 weeks hard with the trapped wind and on the toilet so much my skin was sore.Try to stick to bland foods and I couldn’t tolerate dairy at 1st.If she can keep walking might help with wind.My surgeon preferred me not to take Imodium giving the pouch time to settle on its own after all it’s major surgery,but that was 8 years ago so maybe different now.Good luck I’m sure it will be worth it for her xx

Peppermint cordial or tea may help. Best of luck. It is very early days and things will settle.

3 weeks is very early. I was going to the loo about 15 to 20 times a day. Stayed on very safe food at beginning , no green veg , salad and low fibre , nothing fizzy or spicy and introduced other food slowly . Eventually started loporomide(Imodium) 1 , 30 mins before each meal which helped a lot and still do that now . It does take time . I improved slowly over months and now I go about 6 times a day and some nights I still get up once during the night.

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1 week ago

Two years today since third op / takedown. It has been an interesting two years getting used to a recommissioned butt.
I have gone from taking upwards of 24 loperamide per day to zero with no change to output/consistency at all ( I thought why put chemicals in my body for no reason)
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That's good going Andy. Loperamide is definitely an "as and when" medication. Just a quick warning to all our friends in this group, please don't exceed daily doses of loperamide.

I only take loparamide occasionally now, I'm 7 years from take down. Everyone is differently so i advise to listen to your body and do what works for you xx

My body did not agree with loperamide at all! Sent my heart rate through the roof .... 140 to 160 resting rate or very irregular beating. Came off loperamide and heart returned to normal. Personally I would rather cope with going to the loo 10 to 15 times a day and through the night rather than have the side effects I got. However everyone is different and loperamide works for lots of people

Loperamide works better before eating, or that’s how it works for me at least!

Never used the stuff in 18 years.lol

I find I need 3 a day and I have to take them 30 mins to 60 mins before food for them to work for me. I go to the loo about 6 times a day .

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7 days ago

I have a temporary loop illiostomy how long after surgery do I have to eat boring food for ? ... See MoreSee Less

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You can start introducing new foods when you feel up to it, but good idea to keep a food diary so you can record how it affects you. Your stoma nurse should help if you need it. Xx oh and i found that a food that affected me 1 day may be ok the next. Good luck xxx

Everyone is different but low residue diet is recommended for the first 4-6 weeks. You will want easily digestible foods for the first few weeks at least whilst the join heals from what was your loop ileostomy. Take it slow and easy to start with, the more you eat the more you will go.

My daughter ate 20 McDonald’s chicken nuggets 3 hours after surgery- the professor was horrified! Don’t do that! She just slowly introduced things over a few weeks x

Low residue for at least 6 weeks. I did 12 weeks cos mine was emergency open surgery.

1 week ago

Hello everyone;
I had the first part of j pouch surgery on Wednesday, everything was fine until I started violently vomiting. I currently have a tube going down to my stomach and even if the drain stuff off I’m still being sick. I had a CT scan and they said part of the bowel is a bit sleepy, has anyone else experienced this? I’m so fed up and just want to go home.
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Hello everyone; 
I had the first part of j pouch surgery on Wednesday, everything was fine until I started violently vomiting. I currently have a tube going down to my stomach and even if the drain stuff off I’m still being sick. I had a CT scan and they said part of the bowel is a bit sleepy, has anyone else experienced this? I’m so fed up and just want to go home.

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Aw my. Sounds horrible! I have mine on the 1st , a man did post about the same thing last week, so worrying!! Hope you have a speedy recovery!! Xxxx

Hi sorry to hear this. I had the same problem, sometimes it can take a while for the bowel to wake up and start working again.

Not nice being in hospital when it’s so hot.

its totally normal but still horrible to go through - let the drain do its job, ask for strong anti sickness IV meds and try and get some rest. You're intestines will start moving soon enough. if you are able to get up and walk around it really helps but don't push yourself if you feel too weak xxx

Yes, had this will every surgery including a hysterectomy! Its called paralytic ileus. The bowel is extremely sensitive and does not like being manhandled. There is not much you can do but along with the NG tube you should have IV fluids and pain killers. If the bag attached to the NG tube is not holding the stomach content and you're still feeling sick then ask them to use a syringe to draw the fluid out your stomach. Good luck xxx

I has in 10 days due to the ileus xxx

I had same I had a barium X-ray and then that seemed to kick start it as you have to drink this special liquid hope you feel better soon xx

I had the same hun with my first surgery and I honestly felt like I was going to conk it as I have never felt so poorly and vulnerable in my life. Ask if someone can bring some ice lollies in for you as that’s all I could eat while the tube was down. I promise it will pass and you will look back at this time and realise how strong and resilient you are. You’ve got this ❤️

Your poor arm! Have they struggled to get blood from you? I KNOW how hard this is and how you’re feeling. I had to have the NG tube down as soon as I started eating properly. There was also a ‘kink’ in mine. Try to move about and walk, to move that bowel. It does get better. Step one was the worst one for me. You’ve had MAJOR surgery. Be kind to yourself.

It's called ileus. I've had it with every surgery too. It's rotten so I feel for you. A couple of times it lasted to along they had to put me on TPN to get nutrition in to me. Good luck. I know how horrible it is but you will get better (it just doesn't feel like you will at the time!)

Also, if your pain relief isn’t substantial, ask to see the pain management team. I left hospital on MST, codeine and pregabalin xx

I had exactly the same I was like it for 9days with an ng tube

Yes it’s all a bit of a blur but horrific experience but will be worth the trauma takes a couple of years to settle with pouch. Keep staying positive

Thankyou everyone for your support and kind words it means a lot❤️

Yep.took ages for mine to wake up.i was in for 18 days for step one.

Yes I had that and was being sick also with ng tube in. They need to drain the tube more often so your not vomiting 🤮 as well x

I had the same it will pass, take care x

Ooh yes I had ileus and was in for about 20 days I think. Had to have TPN as well for nutrition as it went on so long. You shouldn't be being sick as well though. They need to syringe stomach out for you so this doesnt happen. I hope you feel better soon - I know it's rotten xx

I was the same as well , sick as a dog , but it does get better . All the best .

Mine slept for 8 days, it was horrible I feel for you 🤗

It's early days. I wasn't sick till day 5, felt sick, couldn't eat, went back on drip, everyone's breath smelled like they has been sick. Once I was sick I felt so much better

I’m freaking out reading all these comments 🙈

I've just come home from part 2 of 3 and I was rough for the first 2 days I was vomiting had a tube up my nose lots of pain relief I'm at home now a long road but you will get there x

Really sorry to hear of your discomfort Rosie Fiddament and hope you are feeling better by now. Yes the small intestine stops working temporarily as it doesn’t like being messed around during surgery. As you can see from excellent comments above it’s a common thing and I had the same. I was given ice cubes to suck on - one every hour - which helped to moisten my mouth as well as giving me some oral hydration and I had a naso gastric tube for them to syringe out the green stuff in my stomach until my small intestine started working again. It was a couple of days for me, maybe even 3. If you are feeling sick and /or being sick then it might be because they are not emptying your stomach contents frequently enough. Ask the medical / nursing staff to empty your stomach more frequently and you shouldn’t feel so ill. Some day soon (hopefully it has already happened) you will start to hear gurgling and pass wind that will mean your guys have started working again. Then start eating solid food slowly - little and often - with plenty and plenty of chewing. Best of luck, let us know how you get on

Yes at every surgery.

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1 week ago

Hi all, I’ve been in hospital since Thursday evening as a emergency admission with chronic pain and small bowel blockage .

Been vomiting coffee grounds and faecal sickness ..

J pouch no movement until last 20 hours and now exacuating totally via vagina as in photo above ..

J pouch is 25 years old had surgery in st marks London to try fix complex fistulas and rectovaginal fistulas 6 weeks ago this is 200 miles away from me and operation 40 ibd related .

The surgeon here at local hospital is treating me conservatively and planning on speaking to st marks on life sat they won’t operate on me here as they say I’m too complex..

Any one else been in this shituations feeling rather fed up and defeated which is very unlike me x

I’ve not shared to my own Facebook as I’m feeling like a failure 😞

Thought I’d ask among pouch friends x

Sorry if photos too graphic just feeling lost and alone x
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I've had my pouch 20 years.never had that happen.ive had blockages a shitness(sickness).but that was when I had adeshion.but never that bad.they should really send u to st Mark's. I had adhesions removed at Hayward heath.cos I had issues after they send me back to bton where I had my j pouch made. Wish u all the best.x

Can’t give you any advice but stay strong 💪 and hope they sort you soon x

You poor thing Paula 🥲 I would think they really need to transfer you to St Marks especially since you had recent surgery done on the pouch vaginal fistulas. You need someone with expertise in that area to hopefully fix it as that amount evacuating from there is shocking, really hope you can get help with that very soon xx

My twin sister was constantly in and out of hospital with small bowel blockages and we as a family know too well how horrible it is. I’m sorry you’re going through this. If this keeps happening demand to have a stoma. My sister begged and they left it too late and her small bowel ruptured and she ended up having a permanent stoma in the end and she’s doing a lot better now. Your quality of life is worth it

You aren't a failure my love. Right now your body isn't supporting you like it could bit that is not you. It's you body. Push to get sent back to st marks ASAP. Hospitals will dither in the hope it gets better whatever their motives. There is obviously something going on with what you've had done recently. Maybe needs looking at again. It is disheartening but it will get better. Get what rest you can as its hard to sleep in hospital xxx

Oh hunny, I’m so sorry to hear this. You are so not a failure, you are one of the strongest people I know. I hope they do get you back to St Marks and they can sort things for you xx

You are definitely not a failure but a fighter, some of the things you are going through most people would be a wreck! Keep your chin up you’ve got this 👍🏼 My stoma takedown lasted 24 hours before I had an anastomotic leak & when I tried again I had it for 3 months until they had to take the jpouch out & give me a barbie butt because it was covered in infection 🤦🏼‍♀️ 25 years seems like a pretty good stint to me. X

Seen colorectal surgeon again this morning . As I’m leaking and he’s considering bowel movement even though straight out my vagina takin NG tube out and being made to eat and drink today and to contact st marks myself tomorrow if I can eat I’m not sick and food passes through .. He says there’s nothing he can do for me as I’m under st marks and I’m too complex …. I’ll email st marks myself when I can today and take it from there I suppose .. I asked how am I to live with my J pouch emptying via vagina and bottom he said wear pads ?? I already wear pads for 15 years with the fistulas but not with the amount I’m leaking vaginally now. This is the leakage from my vagina and the largest pads .. Feeling fed up xx But I hope I can eat and drink and keep it down and that the blockage is passing trying to find positives is what I normally do .. Thank you for all the replies xx

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2 weeks ago

Ruffly how long is the operation for step 1 of 2 of j pouch surgery.
Total proctocolectomy j pouch and stoma formed?.many thanks
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Mine was scheduled in for 8 hours (open surgery) it ended up being about 4 hours though due to me having no adhesions to get through from first open surgery surprisingly (colon removal)

Mine was done in 2 stages - proctocolectomy took 2.5 hours and then 4 hours to create the pouch and stoma. 6 months between the ops. Hope that helps

It depends a bit on what they find when they get in there. Mine was scheduled for 8 hours but ended up being 9.5hrs. One of my surgeons told me afterward if she had been the lead on the day she would have stopped it. The issue was not the pouch formation but the removal of my rectum. The scarring from 20 years of UC was so bad they could get it removed. So it does depend but most surgeons will say of its pouch formation and removal of rectum it’s likely to be at least 6 hours.

1 week ago

So the time has come and i have finally had my surgery to remove my entire colon. Just a few things i wanted to ask.. For those of you who have had surgery, so i had my surgery on 7th june... i been doing really well since except i have not been able to be mobile as much as i would like or as much as they would like.... They are thinking to discharge me tomorrow and im slightly worried whether i would be able to cope as at the moment, i struggled even walking just to the toilet which is in the same room as i am... So i havent actually left my rooom and had a walk on the ward... Now some people have said to me its best for me to heal before thinking about my mobility and others have the the opposite. So i am just confused....what are people's thoughts? should i be waiting till im more mobile? also baring in mind, at home im on my own so if i do have a fall or anything no one would know. My carers come 2x a day an hr each but im thinking more on the point of when they are not there...any thoughs? ideas? experiece? ... See MoreSee Less

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The hospital should ensure you are mobile and can manage stairs before discharging you.... In my experience xx

I had to be able to walk, with a frame, out of my room and as far as the nurses station and back, before they let me out... Mind you i had been bed-bound for almost 6 months.

The more walking and up right the better for you

2 weeks ago

Advice please— I’m going away next weekend in a clamping tent with 5 other people. It has a toilet in the tent but no other toilet facilities 🙈 how can I slow down my bowel (j pouch) so
I won’t need the toilet so much?? Xx
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Low residue diet, immodium/loperamide and not eating after 6pm? Failing that just bring your own portable toilet and place it outside the tent so you don't have to worry about disturbing the other campers at night. Good luck! I love camping but haven't done it in years.

Gosh that’s a challenge Jessica. You want to relax and enjoy the week? Sure you do. I would ask the site owner to organise an alternative separate toilet tent for the week, pay extra for it if you have to, then eat drink and be Merry and enjoy a dam good s**t whenever the need arises well out of earshot and nose shot of your holiday companions. They might well thank you for it and use it themselves. Best wishes for a super break

Loperamide will slow it down, I use it for time like this, especially if I can’t get to the loo urgently!!!

Ooh gosh this gives me anxiety just reading your post 😱 As David has said I would try and organise your own toilet tent if possible or book into the nearest hotel 😂 As far as slowing your bowel down, loperamide, eat less and my go to is warm water enemas to really empty your pouch fully = less toilet visits. Enjoy your break x

If they’re close friends and know your condition then hopefully they won’t care don’t make yourself ill over it, hope it goes well

I just came back from glamping. The site have me the key to the disabled toilet for the weekend so I was the only one using it.

Marshmallows work for me

Do you go a lot ? Hopefully you’ll only need it in the night as I’m guessing you’ll be out during the day...x x

Thank you everyone 😊

I went clamping with a stoma the site gave me access to a separate toilet. Ive never done it with a jpouch. Good luck

We love camping, and so bought a pop up tent and a camping loo, it's works perfectly 🙂privacy, your own, always free if you're in a hurry! It gives me so much peace of mind that I actually sleep better camping than anywhere else, it's so relaxing, it's a different feeling to being anywhere else, a different kind of wild freedom 🙂youll have the best time, knowing that your personal little loo is always there, have fun!!! You won't look back!!! Xx

Oh and immodium👍😂🥰

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1 week ago

I had a telephone appointment with my consultant this morning. It is 3 years since my last pouchoscopy. These are done under GA. When my pouch was formed in 1999 it was normal to leave a small amount of rectal cuff and strip back the mucosa. I was told by my surgeon at the time that regular inspection of this area was required as there is a slight risk of cancer developing. Given that so many more j pouches have been formed since then , does anyone know the actual incidence of them finding cancer. To me given that my pouch is behaving itself and has been for quite some time the risk/benefits of an invasive procedure seem a little uncertain. Thought on this please. ... See MoreSee Less

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Have it!! Why wouldn’t you? No downside. I have my pouch because they found lgd and hgd in my rectum - I was fastidious about regular surveillance, and had I not been, I might not be here now….

I've had my pouch since 2003.its fine with me.just give u mind sedation

Also I had when they call a narrowing to the pouch entrance.which needed dilation.3 years ago They wouldnt have found it without one.

2 weeks ago

So during covid I have lost 3 teeth.soon to be 4.due to covid I have been able to get a dentist.
As I suffer from orthophobia I hadnt been to dentist for 10 years now my dentist has unregistered me.none of my dentists local are taking n.h.s that also offer sedation.
This is now causing me issues with eating...is there any way my stoma nurse or surgery could help me do u think??
Tia
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You could always give stoma nurse a call, good luck 🤞

2 weeks ago

Has anyone with a stoma tried the shakes/soups diet ... See MoreSee Less

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I do my own shakes and soups which are really good for my jpouch, have a calming effect. Have only tried the Ensure compact little bottles of Vanilla and coffee flavours twice which seem to be good too but a bit sweet to have often. I like to use them while playing golf so to have a bit more energy.

I take herbal life shakes They are good for the digestive system and full of nutrients

Try this group for food its brilliant

Slim fast all the way

2 weeks ago

Will I ever stop being sick??? ... See MoreSee Less

Will I ever stop being sick???

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Oh nooo poor you the horrid nasal Gastro tube or whatever they call it .. I’m assuming your bowel hasn’t woken up yet from surgery and is being a little reluctant to work ! I’ve heard chewing gum can help and stimulate it ( not sure if that’s true ) also if you can face it try and get mobile as that will help kick start your innards into action. Hang in there it will get better ! X

You can ask for anti sickness tablets, they helped me. Hope you start feeling brighter soon 🤢

Yes you will....I remember feeling the exact same. It was horrific. Hope you improve soon. 💪

Aw yes eventually, speedy recovery ❤️

Speedy recovery ❤️

Aw I felt like that after my step 3 - Several anti sickness meds but did pass eventually. There’s one by injection which helps you sleep too which was the best! Was so awful at the time though.

You will… I can remember feeling just the same. It gets better! Best wishes 🙂

I thought this when my son was being sick for a full week... I never thought it was going to end or he would get better... but it did stop and he did get better. Hang on in there Michael... 💙 x x

It will get better and so worth it. Anti sickness injection, tablets

As George Harrison sang, All things must pass. The will and they do. Hang in there.

Sorry its so tough. Yes, you will stop being sick as far away as it seems now..hang in there it will pass

The dreaded NG tube!! I had IV anti sickness which helped more than the tablets. Things will get better. If you can get up and mobile as much as you can. This will wake things up and in turn, stop the sickie feeling. Sending a healing hug x

I felt very sick after stage 3 but put it down to morphine. It's such a relief when it goes. Get well soon x

I felt very sick for 8 days, it will get better

I remember being like that , it does pass . All the best

Yes you will, I had that horrible NG tubs for 3 days after step 2 op, it’s the worst I know but it will pass x

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2 weeks ago

Having been on steroids for the past year I decided to stop moaning about my weight gain and do something about it. Been eating a lot more fruit this week, trying to slowly introduce things that I can tolerate. Got to say I've been getting a hell of a lot of butt burn. Any tips on making it less acidic? ... See MoreSee Less

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Following- the burn takes over my days 🤢😭💀

Aloe Vera plant, cut the leaves open and use the juice on a sore backside. I personally would prefer not to eat as much fruit than have butt burn 🔥

For me, giving up dairy stopped the butt burn. Maybe don't go too mad with the fruit and veg straight away, introduce it slowly

Try and stick to low fodmap fruit and veg. Helps with the acidity.

Cut out red meat

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