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You can now read posts from the Pouch Support UK Forum directly from this site. If you are a member of the group you can link directly to posts in the facebook group to react or respond. This is a private  group. If you are not currently a member, log into Facebook and submit a join request to the group J Pouch support (UK specific).

Please note that people post their personal experiences, which might not be relevant or appropriate for you. The Pouch Support UK Forum does not offer medical advice and it is your discretion whether you try any tips and recommendations posted here. If in doubt consult a medical professional. 

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12 hours ago

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24 hours ago

Anyone get muscle weakness in legs with pouchitis and fatigue ... See MoreSee Less

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My muscles hurt all over when I have pouchitis

It's increasingly hard to differentiate pouchitis and flu - both leave me with sore/aching joints and muscles all over

Magnesium shots, helps

I used to

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14 hours ago

Hi everyone. I have severe uc nothing is working and I’m now needing surgery ideally I would like a j pouch. Just at the stage of having some tests done to see if I’m suitable. I wondered though has anyone had it done in one step please and if so where in the U.K. thank you in advance ... See MoreSee Less

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Would recommend 2 step and have it done at St Marks hospital Harrow. I had the amazing Mr Ian Jenkins, the top man. Please have it done where they do a lot, not somewhere where they will “ give it a go” 🥴

I wasn’t given the option, I had a two stage op

I didn’t have it done in 1 step….first step was to have an end elio then they made the pouch and gave me a loop elio….then I had the take down surgery, glad I gave it ago and didn’t live with regretting not giving it a try. I’m glad I don’t have a bag stuck to me but if ever things got so bad I know I could always go back to the end elio

I had it done in 2, I've never heard of anyone having it done in one. I was really reluctant to have it done and they agreed to do part 2, 8 weeks later, they said that was the earliest they could do. It ended up being 4 months as my skin split inside due to all the high dose steriods, and that had to heal. I don't think they usually do it that quickly though. Had it done in LGI, but now I see someone in UCLH. They are always very impressed with the pouch, and always comment on how impressed they are, so I'm happy with it even though I wasn't impressed with the aftercare at LGI

2 days ago

Hi everyone.
My son (12) has just had J pouch surgery, in one step so no stoma, two weeks ago.
Still very much healing so he has bowel incontinence and sore bottom.
I was just wondering if anyone can tell me when to expect the nighttime incontinence to stop as this is having an impact on his mental health. He is eating right, staying hydrated and got cream for his bottom.
Is there anything else I can do for him?
Thanks, from a helpless mum xx
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Anusol numbing cream For haemorrhoids after every bowel movement comes with nozzle so can put inside too x

Just tell him to hang in there Claire Allen - it’s going to take a while. But things will improve. Ilex was the best cream for me and I still use it, 4 years later. Where did he have it done?

Does he take any meds to slow down his output? Like loperamide (1 or 2 tablets for each meal, start low dose first). Psyllium Husk powder is also quite good.

Germoloid cream, has lidocaine (local anaesthetic) so numbs the areas and takes away the burning/itching feeling. Each week that goes by it'll get easier. When the Dr allows it, immodium to help slow down bowel movements. If stomach cramps, I found a hot water bottle helped and lying on my side. Oh, and never wipe! Always pat, and use a portable/installed bidet. The skin there is so delicate and the output can be quite acidic.

Loperamide and Psylluim husk are good! Xx

St Marks Hosp are amazing at giving advice. They have specialised pouch team. Good luck

Mash.mash.more mash.stodgy food will slow it down n thicken consistency.other then that as about meds. May I ask why in one go?.

Thank you all - I’m so grateful for the response 💜

Bless the lad. Tell him to keep his chin up. Things will get better and he’ll be back to normal in no time. He’s clearly a tough kid. Calmoseptine is easily the best cream I ever used. Works instantly, not cheap and not easy to get hold of but definitely worth the hassle. 👍🏻

I know he is only 12, but I had a bio-bidet seat fitted to our toilet (life saver, wish I had had it earlier) Toilet paper can cause issues (think it's the bleaches in it (not sure) I know this will not help with his BM's but helps greatly with soreness (like anything takes initially a while b4 improvement. However if this is not possible try WATER WIPES (not baby wipes-as these can sting to,) As for your sons new pouch, this will enlarge in size over the next twelve months, and he will find his new normal.

It’s very early days .It will take some time to settle. Hang in there. Lots of good advice here. Make sure he eats bulking foods , bananas , white rice pasta chicken , anything white basically to start with. Don’t eat big meals or drink lots of water in one go. Don’t eat too late before bed make sure he is empty before sleeping. Might be worth to set an alarm if he goes in a deep sleep to go to the toilet. His body will adjust in time. As for medication , your surgeon will prescribe loperamide , make sure you get the tablet version and not the capsules ,husk is good but introduce slowly as he my get stomach cramps. Some creams with lidocaine ( hemorroid creams are good ) but could cause irritation if used too much . Go for a really good nappy rash healing cream and try too get it inside as well as outside. To start with have a wash in shower rather than wipe with warm water , avoid toilet roll if you can.

This is all very helpful, thank you xx

Very early days for him yet and the all in one sounds tougher than the 2 or 3 step as using pouch whilst it’s also healing. Get him doing kegal exercises everyday, several times a day to strengthen his sphincter muscle so he can hold and less likely to leak. Get a bidet installed or have him use a portable bottle type one about £10 on Amazon. Wash don’t wipe then Pat dry with loo roll, need to be super clean as pouch contents are very acidic and will eat the skin. Germaloids ointment (not cream) is good as it had lidocaine in it to numb. Calmoseptine is brilliant stuff, pricey but worth it, can only get it online and shipped from USA. Can’t imagine going through this at age 12, what a brave lad 🥰 First few months are the worst but it get loads easier!

Hi it takes time and will settle down , I was prescribed Codeine for a while which helped and then I slowly took myself off them . I'm 27year pouchi . All the best to your son . 👍

Courage. Takes time. Here are some tips. Get yourself a ‘happypo’ pear pump(see internet). Ask the chemists, they will have something similar. It sprays water to clean the area without rubbing it sore with toilet paper. Do not use toilet paper unless you have to. Get non-perfumed disposable wipes. Toilet paper fibres come off and are in place to irritate you next time. Add cream which you do to a clean area. Here if the skin is sore, you will need some healing cream. After that has been applied you will need a barrier cream to stop the acid getting to his skin. Next your insides. Ask Dr if he can have psyllium husks or in powder for. This has the benefit to reduce the acidity that burns the bottom. The area becomes more sensitized, hence the word courage. He will get there. All the best.

It’s early days, will improve. But had a spell of nighttime incontinence myself after 20 years. I got Attends F6 faecal pads recommended. £10 for 40 from Amazon and in neutral packaging. Bulky, but ironically because I knew they were going to hold it in and absorb it away. From my skin to an extent, I was got better sleep. So was able to recover and cope with the situation better. Also, in addition to bulk foods, try marshmallows and jelly babies to thicken. Nice change from having to think about just ‘food’

I know this isn’t related to your original question, but is his school being supportive and do you have some good info to give to staff at school so they understand his needs when he’s ready to go in?

I had mine in one op but I was 38, it does get better and easier unfortunately it takes time, stodgy bland foods nothing spicy or salads also for me milk my pouch really doesn't like milk I tried soya milk and that helped specially in the early months Tesco's sweetened soya is my go too as it tastes better than unsweetened and oats not wheat I'm nearly 66 now it does get better good luck for your son my daughter was 15 when she had 2 stage surgery she's a police detective now and 43 doing great

Hi Claire , hope your son is doing well, I had my pouch very young and it’s still working after 35 years. I remember when I first got home I had very loose stools , leakage and it got me very depressed. I called my surgeon and he told me to take plenty of salt, it takes a while for the pouch to start absorbing salt which is absorbed in the colon usually, this helped me a lot, my body started absorbing water , my stools became more manageable and surprising it also improved my mental well-being. Salt is very important for proper bodily function. Not sure if your using the st Marks rehydration mix, this has plenty of salt in it.

Thanks again for your suggestions and input. It’s all been very helpful and I will of course be in contact with the surgical/pouch team on Monday xx

Hope things improve soon 🙏

It won’t stop.

Hi, I also had the all in one surgery from GNCH when I was young so can very much relate to your son! I agree with all the above suggestions, I was put on codeine and loperamide for a while which was a godsend and slowly everything got a better but yeah the first year, especially the first 6 months will be tough. Wishing you both the best and feel free to message me anytime for advice!

I used flannels and shower I was prescribed imodium and senna to help train my bowel to help with the washing I wore open nappy to help I use barrier cream parrafin based and also had prescribed timodine to help with really sore bottom I'm 1 year with jpouch but am still having issues

I saw the mental health aspect get mentioned a few times. There's a website that is a platform for all specialists in therapy called BetterHelp. It's out of the US but all practitioners are licensed and can do video consultations. I know a PhD psychologist who works in a hospital full-time and does her private practice via the site, for example. You might be able to find someone who is experienced with trauma informed therapy (since the process of getting a pouch / health crisis is traumatic) that can help your son and perhaps other immediate family members adjust. Just a thought. (I don't think BetterHelp works with insurance so they price their consultations much lower than a private PhD psychologist would.)

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4 days ago

Hi!
New member and first post here.
I currently have an ileostomy have done since December 2021.
It was very unexpected, had symptoms of sickness, diarrhoea and stomach cramps for 5 weeks and ended up in hospital. When the performed a ct and abdominal X-ray they found I had a perforated bowel caused by ulcerative colitis.

I went down for surgery after a few hours, stoma was supposed to be temporary but when they opened me up my large bowel literally exploded and disintegrated in the surgeons hands (sorry it’s gross) so I was told it couldn’t be reversed.

I spent 11 weeks and 5 days in hospital. I had loads of complications, Serious infections, a vac machine for 4 months, 2 stays in itu, was on a ventilator, just very very poorly. It’s been a long road and I’m nowhere near the end of it all.

I was referred to a another specialist surgeon who I met yesterday.

They’ve gave me 3 options;
1. Permanent ileostomy
2. Ileo rectal anastomosis
3. J pouch.

I have no idea how to make that decision.
I’m really here to find out people experiences of a j pouch, positive and negative. I’d love to hear it all so I can get peoples actual experiences and not just information from Google.

Would anyone mind sharing their experience of a j pouch (positive and negative)?

Thank you so much!!
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Hi hun I have a j pouch and it's taken me.a while for things to settle down. I've had my j pouch for 5yrs now. I found the recovery hard going but as times gone on its got loads better. Some people sale through the recovery and others don't everyone's recovery is different. I'm glad I got mine, even though having a temp bag wasn't as bad as I was expecting I've recently found out I'm allergic to adhesives (my skin was realy bad around my stoma). I can eat most things but also find some things irritate my pouch still, stools can b loose and when u pump it will b louder then normal. I like having my j pouch now and glad I made that decision there was times I questioned if I'd made the right decision but I defiantly did. U learn to hold the urge to go to the toilet and I can go for long walks and b fine. Also get a good bum cream but burn is killer at the start. Hope u get better soon x

My story is very similar to yours. Diagnosed with UC, less than 18 months later was in hospital with uncontrollable flare and my bowel perforated. Had to have 2 major surgeries within 7 days to save my life, ended up in ICU with a stoma. This was all done in a local hospital and then after 4 years of problems with the stoma was referred to st marks for Jpouch surgery. Had the surgery in 2013-14 (2stage operation 6 months apart). After 2nd op I had multiple infections, my bowel never ‘woke up’ properly and stopped absorbing fluids. Spent 10 months instead of 10 days in hospital leaving with a Hickman line and needing IV fluids every night. My Jpouch never worked properly from day 1 and I’ve been left incontinent, in pain and now suffering from frequent bowel obstructions. I’ve spent 9 out of the last 18 months in hospital on various admissions and am now waiting for surgery to probably have a stoma again, even though the idea terrifies me as I had so many problems with my stoma. At the moment I’m unable to eat as I’m having so many problems with my pouch and my bowel as a whole and am not reliant on TPN (which is a whole other story!) But right now I have such little quality of life having the surgery is a risk I’m going to have to take. I was sold the idea of a Jpouch being a fix for all my problems but nobody really explained to me what could go wrong and I was young and naive and didn’t look into it too much. I desperately wanted to believe the drs when they said they could fix me and take away my stoma. I don’t mean to frighten you as I know lots and lots of people have very positive experiences with Jpouch’s but make sure you go into it with your eyes wide open if that’s what you decide. And research the hospital and surgeon. All are not created equal!!

Wow you've been through the mill. I had cancer so my choice was permanently stoma or J pouch. Its not an easy option but after having a temporary ileostomy I definitely made the right choice. Things will not ever be the same, lots of minor complications but I'm alive, cancer free and no bag. Good luck in your decision xx

Bethany Jane - i had an ileorectal anastomosis for 16 years and then had rectum removed and pouch made 4 years ago. So I’ve had both! Very happy to chat or DM.

I had uc for a number years before needing my bowels removed I had a jpouch formed in 3 stages. Life with a jpouch is up and down I've had it since 2016 when it works I go about 8x a day which I'm happy with but I've just finished chemo and I have had so many different viruses and infections my pouch has suffered about 30x a day at some points. I'm currently in hospital, day 26 and I'll be in here for a few more weeks, I'm just hoping they can fix my jpouch otherwise I won't have a choice but to go back to my stoma. Good luck in whatever option you decide

Hi, my story nearly same as yours... Was treated at home for gastroenteritis for over 2weeks, was rushed in hospital day later had life saving operation, my bowel had perforated, each time they took large bowel it just broke away, ended up with a stoma on high independence ward then icu. Had choice after being referred to have a J pouch, was very scared and terrified of another operation but went ahead and had it done... So pleased I did, took a while but worth it, that was 17 year ago. Please get in touch if you like by pm.

Such a huge and difficult decision and you will get so many responses. For what it’s worth, on the whole, my pouch has been great and I’ve lead a ‘normal’ life pretty much. My pouch is now 23 yrs old! (I’m 56). However, adhesions meant problems with my tubes and ovaries so I was unable to have kids. You look young so think about that. Watch Prof Clark’s talk on the Red Lion group site. Her description of a pouch v stoma being like a Porsche v Fiesta (or similar!) is brilliant. You can’t always get your local garage to service a Porsche. In the same way, get treated by expert surgeons even if they’re not local. Also, the point about Crohns is important. Anyone I know with possible Crohns has not got on with a pouch. Good luck.

Your story mirrors mine, I hasn't even heard of ulcerative colitis. I was diagnosed amd had surgery within weeks. I had complications with my first surgery and spent 2 months in hospital. Due to both the physical and mental trauma of what happened I couldn't face life with a bag. I was only 35 and newly single and thought my life was over. So I decided to go for a j pouch against my surgeons advice. It hasn't been plain sailing. I had lots of complications post 2nd surgery but I don't regret it. It's a whole new set of problems with a j pouch but mentally I am in a much better place than when I had a bag. My advice to anyone is to only try a j pouch if you are unhappy with your bag.

What a traumatic experience for you. As well as your physical health make sure you are looking after your mental health and seek some talking therapy if you feel it's needed. I've had a J-pouch for over 20 years now and have a great quality of life. I was lucky to conceive 2 children but I know one of the risks of surgery is that it can affect fertility (well it used to be a risk 20 years ago but I don't know now, things might have improved) I do have pouchitus frequently but medication helps keep it at bay. You sound like a warrior for overcoming everything this far so good luck in which ever option you choose next x

Hello, I had my j pouch 16 years ago after a difficult journey with my total collectomy for UC. It came from nowhere and I was seriously unwell after my surgery with stays in ITU and hospital stay for almost 4 months. I was referred to St Marks for the JPouch but I was reluctant for quite a long time as I was terrified of being so I’ll again. Long story short I went ahead with the 2 stage surgery and apart from one hospital stay a year later and feeling exhausted often, and a number of what I now know are relatively minor challenges I have done really well. It’s a really tough decision. But I am 64 now and I have good quality of life. It’s important you are looked after by a team who really know what they are doing. Good luck. Also the Red Lion group and this group are so useful and it has changed my life I understand so much more.

I had my j pouch in my early 20’s after ulcerative colitis and it’s still going 35 years later. Whilst I also go to the toilet about 8 times a day, I find it very manageable, unlike colitis you should not have a sense of urgency just a slight bloating feeling, I often wait for hours before finding a convenient time

Hi Bethany 😊 So sorry to hear that you’ve been through so much. I’ve had my jpouch for three and a half years and now it’s settled down, am very happy I went for it. I don’t really count how many times I go to the toilet but I’m out and about with my job and just go when I see a loo. I am able to go out walking, go on holidays, go out with friends and family. For me, I prefer it to the stoma as I used to have to take a bag of supplies everywhere with me incase of leaks and used to worry about that as I had a lot. Now I just make sure I always have tissues and a mini spray in my bag. I was also offered the IPAA but then they discovered I still had UC in my rectum so it wasn’t an option and I had the jpouch. It takes a while to get over the surgeries and to train your pouch so that’s something else to bear in mind when making your decision. Like someone else said, mentally it’s a very difficult thing to deal with and I think I had a bit of PTSD after my experiences and it helps to talk to a trained councillor. There are lots of Zoom forums where us pouchies get together for a chat and we’d all be happy to share our experiences with you. Good luck with making your decision xxx

I fought with pancolitis for 5 years, then had a stoma for 5 years with an intact rectum ( thought I might want a jpouch once I really recovered). I had hernias and obstructions during that time, so when they wanted to go in for a hernia repair I was offered the option of a J pouch. I met initially with a surgeon that I didn’t have a lot of confidence in and changed hospitals after reading much about J pouches. If you get a J pouch find the absolute best surgeon with the most experience. I have only had my pouch for eight weeks. I could’ve lived with a stoma it was not that hard, but the J-pouch offered me the option of not just getting a hernia repaired with mesh inserted. I am 70 so I did not have to worry about pregnancy and having my pouch for 25 years. Everybody is different, so please make the best decision for you.

I'm so sorry to hear what you've experienced. A few months after my UC diagnosis I was referred for a J-pouch as the meds weren't helping. I was 15 years old and my surgeon was confident it was the right decision for me and that was that! I actually just had one surgery to do everything rather than the usual 3 stages so can't comment on the stoma. However, I've now had my J-pouch for 9 years and altogether it's been a good experience. I can live a relatively normal life and have had only a minor few difficulties with it (which have been nothing in comparison to the UC). If you'd like to chat more or have any questions, please just message!

Same story here, colon removed as emergency after perforation found due to UC. Ileostomy for over 2 years, had Jpouch now for just over 5 years. Love my jpouch and would hate to go back to a stoma. 3-4 bm’s per day on average, sleep throughout the night most nights, eat and drink what I want apart from mushrooms. I used to get quite a lot of blockages with stoma, never have with jpouch. I work full time, exercise etc. it’s just like having a mini healthy colon. I was very anxious about making the wrong decision but knew deep down I had to give jpouch a go or I’d always wonder what if. So glad I did it! Can’t comment on the IRA option you have been given, didn’t think they did those if your diagnosis is UC as it means keeping your rectum which UC affects. In your shoes I’d go for the jpouch as IRA sounds too risky. Good luck with your decision x

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2 days ago

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2 days ago

Not feeling well this morning & not sure what is going on. Does anyone have any suggestions?
Had burning acid indigestion in the night. Lots of watery diarrhoea this morning and now just been sick. No abdominal pain though. 🤔
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Sorry you feel poorly. But keep your fluids up!

Eaten anything unusual (or off) in the last few days?

3 days ago

Anaemia…
Anyone else?
I very rarely get my bloods tested.
I’m 54 and in menopause with chronic insomnia. Had a full set of bloods taken this week as I have virtually no sleep and have been suffering for months now. Got this text off my doctor this morning.
Called back and he’s left for the day.
Edited to add: Had my pouch for 20 years 🤦🏻‍♀️
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Anaemia…
Anyone else?
I very rarely get my bloods tested.
I’m 54 and in menopause with chronic insomnia.  Had a full set of bloods taken this week as I have virtually no sleep and have been suffering for months now.  Got this text off my doctor this morning. 
Called back and he’s left for the day. 
Edited to add:  Had my pouch for 20 years 🤦🏻‍♀️

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Call nhs 111

What a useless text - "I am concerned" - well its not your fault is it! Hope you get an iron infusion / some appropriate treatment soon.

I have b12 injections now . They have helped me .

I’ve had iron and blood transfusions due to chronic anaemia.

Yes mine went lower than that. Has scans, scopes, pillcam and they couldn't find why. I put it down to pouch and maybe not absorbing. I had iron infusions xx

Left for the day!!! And no one else can speak to you!! I’ve had anaemia and know what the tiredness and fatigue is like. I got iron tablets for a few months. Hope you get sorted and very soon. Maybe try NHS 111 and see what they say? (My anaemia was due to fibroids in the end after all the poking and probing). Take care. Xx

Im 53yrsYip me iv had 5 blood transfusions 10yrs ago They disconnected my pouch im on vit b12 injections and folic acid iv had iron infusion Having my pouch removed in the next few weeks see if it helps x

Once the doctors get you all leveled back up, I take Wellwoman Plus daily and it keeps me on track - iron is good, B12 is good, D is ridding the lower line in winter but okay, etc. Perhaps ask your team about a good multi you might be able to tolerate after infusions to level-up??

1-2 iron infusions and it will jump right up again. Mine was down to 2. Having awful cramps, not sleeping. Had infusion about 3 weeks after blood tests. Within 2 days felt like a different person.

That’s very low HB. Not sleeping is definitely a symptom of low iron. I have iron infusions every four months or so. My hb is 90 atm and im going on Monday for my infusion. Hope you get it sorted soon i know just how exhausting it is x

Mine was lower back in 2017 had 2 blood transfusions 1500mg of iron and same of ferritin been ok since

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3 days ago

Hi I don’t know if anyone has the same problem (I’m sure they do). My pouch keeps twisting, I thought it was blockages but my surgeon says it twisting. It happened about 6 times in the last 2 months and really don’t know what to do. Surgeon is talking about surgery and having a colostomy bag back. 🤦🏼. Any advice would be great. Thanks  ... See MoreSee Less

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Is a pouch redo possible?

I’m in a similar boat. I keep being admitted with bowel obstructions. Surgeon says he’s not sure if it’s adhesions, endometriosis, my pouch or bowel twisting or a combination. I’ve had to consent to surgery where basically he will open me up and decide what to do when he sees my insides. Looking like a stoma is going to be the end result. My pouch is pretty dysfunctional anyway but I had loads of problems with stomas which is why I had a Jpouch. Even talking about taking the Jpouch out and having a barbie bum which absolutely terrifies me.

Lee Green and Natalie Maltby, are you being treated at pouch- experienced centres? Is it worth a second opinion (from a pouch experienced centre)?

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