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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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10 hours ago

I’m starting uni in September to do nursing degree and just wondering how much Imodium people take each day. I take 3 in a morning before college two days a week but my shifts will be longer so I’m trying to work out a new eating/Imodium schedule that will work for me ... See MoreSee Less

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Hello, I'm a nurse and work long shift but I don't take any. I always have a banana before my shift 😂

I take 2 first thing in the morning and 2 before evening meal and 2 before bed.

I take 3 in the morning, 2 at lunch time then 2 before bed.

I use to take 8 a day but weaned off them. Think it was more in my head I needed them🤔

I take one in the morning on a normal work day in clinic (as I have toilets close by) If I’m on home visits I’ll take two.. It all depends on where the toilets are for me. X

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1 day ago

Good Evening all

My daughter 22 is having her reconnection on May 31st, and I’m absolutely terrified for her.
Not the surgery but the effects of having and getting used to a Pouch.
I’m presuming that the non stop output lasts a few months and the bum burn as well.
Could you all please give me your very honest stories on what we should be expecting.
And also your recommendations on what to buy - bidet, barrier cream. And will she need protective sheets . Thank you
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Hey! I get you're worried. Personally and I obviously can only speak for myself. My third surgery was to the easiest. It did take a few weeks to get to grips with my pouch. But I didn't have any leaks or anything like that. I did use some barrier cream, just metanium baby cream just to make sure I didn't get sore. Sometimes used wet wipes also but I found once I'd sorted out my eating to thicken up my output I was okay. Everybody is different of course but I would try not to worry.

eat small and plain foods for a while - chicken, fish, rice. Remember to keep hydrated also. Introduce new foods gradually. She will go to the loo approx 10+ times a day at first but she will have control and that control/urge will improve over time. I use a normal nappy cream, toilet wipes. I don’t eat normally 2 hours before bed also. There might be some visits to the loo during the night at first but as muscles and control improves this should decrease. Nothing wrong with a protective sheet at first if it will bring you some peace for night time. I know some people recommend the portable bidet from Amazon. Take it a day at time and tell her to look after herself and not too be hard on herself. It’s not a race nor a competition. She’s got this and she will smash it.

Just take one day at a time, it takes time to get used to & train your pouch. The output at first does seem often but in my experience it wasn’t too bad. I ate little & often at first and used germoloids cream. I’ve never needed protective sheets. I’ve had my pouch 5 years now & it’s honestly been brilliant, best wishes to your daughter xx

I've had my pouch 23 years. The first few months might not be brill. I remember thinking " what the hell have I done". Frequent trips to the loo, butt burn. I could control it and didn't have accidents. Pass wind on the toilet though. But it is honestly the best thing I did. After that settled down it was brill. Making yourself go longer and longer between trips to the loo is your aim. I used adverts on the TV waiting for the next on, then next 2 and on and on. I can now wait hours if need be. I do all sorts of activities. I'm a farmer so out with cows and chickens. Go on holiday touring Europe on a motorbike 🏍. Barrier cream ( I used drapolene because it also wiped off easily)and wiping very gently is a must. Loperamide and foods that help thicken output are good. Starting with a bland diet for the first few weeks too. But each week gets a bit better. But everyone on here is here to listen and give advice on what they did. I might of been lucky but there are a lot of people on here who love theirs too. Send her my best wishes.

I found the main issue after my third surgery, when the stoma was closed off, was the pain!!! I think because it’s the most minor of the ops, I think I was given less meds to control it afterwards so to took a day or two to get that under control and comfortable. It seems such a long time ago (10 years ago now) so my recollection isn’t as great, but I remember the first few times I went to the loo it was like tar. This is quite normal apparently. Start her by eating little and often and simple, easy foods at first, nothing too spicy! Bepantham is a good soothing cream for it things gets a little sore. Every case is different and how we each respond to the internal pouch is very individual so there’s no one size fits all answer. I know at first I tried not to venture out too far from home and the safety of a toilet nearby so just let build up her confidence in her own time. It’s good to try and ‘stretch’ the pouch by not dashing to the loo as soon as you feel the urge. Instead try to just wait an extra five mins or so, though of course she just must judge for herself if and when it’s right to do this as you don’t to risk accidents. Wishing her lots of luck with the take down xx

What you are describing is a worst case scenario which is really not the case for most of us. The final surgery is a breeze in comparison. For me personally the most I ever went was about 8 times in 24 hours which gradually reduced and settled at 3-4 bm’s a day by 3 months. But burn can be an issue. Tell her to apply a good barrier ointment from day 1 after every single bm no matter what. Also use a bidet then pat dry. Wash don’t wipe! Prevention is better than cure. She will need to take it slow and easy with foods for the first few weeks too. I get your nervous for her but she’s going to be absolutely fine 🥰

I am 3 months post op now and I properly go the toilet about 4 times on average a day and it's the best thing I have ever done. I do not regret a thing. I have never used cream but the bidet was a god send. I have attached a photo

All are different as many here state but I terms of soreness definitely invest in portable bidet as loo roll contains bleach so can irritate already a very sore area - any king of haemorrhoid ointment (not cream) with a decent lidocain Content - if she does suffer with soreness they should prescribe lidocaine gel - stings like hell on application but numbs quickly - in terms of diet slow and steady low residue mash, white bread, white rice, chicken, porridge, banana. Also a blender is a worthwhile investment to blitz up nutritious smoothies - above all take it steady. After a while shell need to try to re educate her sphincter as it hasn't worked in a while - basically while at home try to hold the urge for a bit gradually increasing but all of course at a comfortable pace - everything will be swollen & inflamed so problems peeing can also present themselves - hot water bottles can help here. Keep in contact on here too. Everyone's different People's recovery can be from weeks to months so don't worry.

First 2 months were very difficult, but it gets sooooo much better as the weeks go by. I used germoloid cream (has an local anaesthetic- lidocaine in it), Epsom salts bath to help with the butt burn, a portable bidet really helped, pat don't wipe, with wet toilet wipes, keeping food diary and help identify any foods which cause butt burn/wind.

After 30 years, I have a job to remember. I do know that I looked at this as a positive, a cure. It took a few months to get into a routine, some discomfort, which is to be expected. I avoid foods that upset, my output is mostly 4 times a day. I used Draplene as a barrier cream. I have the odd upset, normally rights itself. Think myself as being so lucky to have a second chance at living. Wouldn’t change anything. Mytoilet habits may not be the same as the norm, but they are my norm. Good luck.

Hi! I’m 21 and had my re connection in December! It was the best decision of my time and I have my life back which I haven’t had the past 6-7 years. I can eat what I like and drink what I like, the first month or so was hard while trying to expand the pouch and to hold more. But I can say 6 months in, was the best decision I could of made! I hope this helps and if any problems or any advice I’m only a message away!

My experience 1st op was the worst, 3rd easiest. Avoid nuts, sweetcorn, mushrooms all cause me blockages. Acidophilus chewable tablets seem to help reduce the wind though bowel movements are explosive most times and up 2 to 3 times a night, multi vitamin B complex helps energy levels as having to get up for 7a.m. each morning can be very tiring for work. Drink 6 to 8 glasses water a day, avoid eating big meals, small and more regular and try not to eat after 8pm, butt burn Vicks vapour rub surpringly soothes and eliminates the pain within 5 to ten minutes. Bowel movements usually 7 to 12 a day depending on what I've eaten. White diet the best white bread, pasta, potatoes, chicken etc., Wishing her all the best stay positive

I've had my jpouch over 24years and initially was prescribed Anusol as I was told I'd get a sore bum. It was a life saver and never used anything else - not that I've needed anything for many years but I always keep som in just in case. The GP can prescribe several tubes at a time which is cheaper than buying it. I never looked back got my life back I didn't get on with the bag, had awful leakages and soreness. Just introduce foods slowly and chew everything, I did sphincter exercises and never had any accidents or leakages. If you check out the Red Lion group they have some great info and do a zoom group chat once a month which is brilliant to ask anything. Just be patient and positive. Good luck. X

I understand your worry. I had my pouch over 20 years ago and now i only go two or three times a day on average. Most important thing I'd say is to keep well hydrated; i keep a bottle of water with me all the time so i can keep tabs on the amount I've drunk. In the early days the wrist yob for me was butt burn. My surgeon recommended Metantium nappy rash cream but i didn't get on with that. I tried Sudocrem but found that that stung. In the end i settled on normal Vaseline - just a light touch. I also used to wear sanitary towels, especially when out - just in case and for peace of mind. I also used an incosheet on my bed, again, just in case. As others have said, you need to train yourself but it will come good in the end. Keyword is patience and appreciate how far you've come. Wish your daughter all the best and welcome to the club. X

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1 week ago

Hi all, I feel constipated since Wednesday, when I go to the loo I feel like a big bowling ball wants to come out a pea size hole and nothing comes out and my bowls are making loads of noise & seems to move back up towards my stomach,but as soon as I sit down or try to sleep small amounts of poo comes out by it’s self 🤬 as I can’t seem to keep it in soooo annoying & soo sore of wiping. I feel like for some reason I can’t empty my J-pouch.Anyone experienced the same thing. ... See MoreSee Less

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Sorry to hear this. I’ve never experienced this but I’d get this checked as soon as possible.

Have you tried massaging your tummy when you are trying to empty your pouch? Definitely get it checked out if it persists. Take care x

I have this problem all the time lactulose helps but mske sure you are near the toilet also try one teaspoon of bicarbonate of soda in a little water if that doesn't work increase the amount good luck

It could be a few things. Cuffitis possibly and the inflammation makes you feel there is something stuck or it could be a stricture (narrowing of the outlet) seeing as your not getting much out but feel the need to go and the leaking. Strictures are very common and can happen at any time. It’s best to go and get checked out and then you can get the right treatment x

Take some buscapan, I had similar situation last week and taking 2 tablets at once helped me, good luck

Definitely a stricture I have had mine now for a few years … I have exactly the same symptoms. You need to be dilated see your surgeon x

Drink plenty of water - i mean more than usual. Sounds a bit like a blockage to me... Have you eaten something that may have caused a blockage..? Last time i had one was when I'd had a bit too much cabbage...

I had something similar it turned out to be cufitis and pouchitis. I had the feeling to go and pass but nothing. But I was passing stools in between. If still persisting speak to your Dr for a scope to check. X

I hope you are feeling better!

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3 days ago

Hi all. I am almost 3 weeks post takedown. The thing causing me the most problems is I have piles and they are soooooo painful. Like making me cry painful. I have tried Epsom salts, Ice pack , paracetamol, steroid cream and anu sol. Can anyone else suggest anything or when suggest anything to make going to the toilet less painful. Xxx ... See MoreSee Less

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I’ve been there 😢. Ask the doctor for lidocaine cream or cream with lidocaine in it (scheriproct is good as also got steroid) may sting when you first put on but then it’s numb. Also try taking codeine.

Try sudacrem too. It’s very relieving ( babies love it )

So sorry for you, it’s a tough time.

Is it piles or anal fissures from wiping so much? My consultant gave me some cream for fissures (sorry can't remember the name) but it helped. Good luck hope you get some relief xx

Superdrug own brand treatment gel is really good. It should help. Good luck.

Do you have a portable bidet/spray bottle - if not try one - literally life changing - this way you only need paper to gently dab dry after washing. Toilet paper can really irritate & exacerbate the pain.

Hi Poppy, I was in absolute agony with fissures, I tried everything and nothing worked, I stumbled across a website called amoils.com, they have an ointment for what you need, although they are expensive it's the best thing I ever did.

Germoloids, it contains lidocaine cream and was a life saver for me. Also Metanium nappy rash ointment for the skin around the area, as was very sore.

Diltiazem cream this what you need prescription only from your consultant or GP, I had exactly the same and I was in agony, my surgeon prescribed it and it works, good luck

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3 days ago

Hi everyone
Who do you use for your travel insurance? I usually use insureandgo but wondering if you guys recommend anyone generally cheaper but still covering all our ailments...
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I use NFU its added on to my house insurance. Even after hospital admissions for a partial blockage it didn't go up. We go away a few times a year touring on our motorbike so I have a yearly worldwide one. Compared to others I thought they were reasonable.

Try the post office, I got a years policy when in between hospital visits & it was reasonable considering I had a 5 day trip to the USA... Good luck

I used staysure and filled in that I had colitis and had bowel removed . Here’s my link you get 20% of staysure.mention-me.com/m/ol/xo9qo-toni-kelly

I use cheapest but always put in the right information

AVIVA travel insurance

I have used Insurewith ever since my operation. I had bowel cancer and have a pouch . They were the cheapest by far when I did my first holiday ,in 2017which was long haul and I had gone through at least a dozen companies . I did do another check round them all when I did a Trip toNew Zealand in 2019 and they still came out the best.

Thanks for all the options everyone!

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4 days ago

Hi peeps, just wondering if anyone here whom has f.a.p.
I initially had ira colectomy, now have a J Pouch too ...
Does anyone take ' Pro biotics' & if so do they help? ..
My guts of what's left of them are not happy atm ! ...
Thanks a million my fellow pouchers
X
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I do take probiotics and it definitely helps but I also have to be selective about what i eat.

4 days ago

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Absolutely, well Posted Gazzer

Thank you for posting this 👏

5 days ago

Can I just say, I’m so very glad to have found this group recently. After 18 years since my colectomy and 16 since my J pouch I’ve struggled on with some issues ( nothing major apart from one pouchitis 14 years ago) but just general day to day challenges - So I want to say thank you to who set this up and to everyone for sharing your queries… I now know I’m not alone and that actually some of my ‘Issues’ are OK!!! 😀 well as ok as can be!!
Happy Wednesday everyone.
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Welcome.

I felt exactly the same for finding this group, it also helped me to get further help and not take it as gospel what your told is wrong is so I'm now 7weeks into a closed of pouch and have a temporary Stoma if I hadn't gone back and seen someone else I would have starved myself to death literally. So big thank you

6 days ago

Guys how do you deal with the constant tiredness? I can’t go through a day without needing a nap. I wake up tired and want to stay in bed but I can’t. I have b12 injections every 2 months. I take vitamin d tablets daily but nothing is helping me. Any advice would be appreciated 🥰🥰🥰 ... See MoreSee Less

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Caffeine. Also, when I start to feel sleepy, if I can power through the next 5 or 10 minutes it usually passes. Doing things which require me to be on my feet helps, even mundane things like housework. That said, if you need a power nap to help you get through the day, there's no shame in it.

Have you had all your bloods checked? Hydration really helps. If I don’t think enough I get fatigued. Food with lots of nutrients too and good undisturbed sleep. I found exercise can help me too. I’m absolutely struggling this week though, but I think it’s down to hormones at the moment.

Nothing you can do really just hard to accept

I know being active fights fatigue. I’ve not been able to test this theory due to being fatigued! 😆. I just nap when I need it!

I was diagnosed with ME (chronic fatigue syndrome) in November. After doing some research it is extremely common in people with IBD. Have a look at the symptoms on Google. I had a 2 year battle to get a diagnosis but finally got an answer to my extreme fatigue. There’s no treatment unfortunately, it’s all about managing it. May be worth speaking to your doctor xx

Does anyone else go through phases? I have days when I really struggle and other days where it isn’t so bad. Today is a tired day. Caffeine helps me and vitamins. It can get us down mentally as well though.

Hi I posted about my tiredness a few weeks back and most of the time I’m fine but just get phases of extreme lack of energy… as if someone has sucked all my energy out of my veins and I feel like I am starving hungry.. well that feeling you get when you are really empty. I think now it’s not as unusual as I thought it was. Guess I have to just put up with it.

Diet can be issue if you can boost your immune system with fruit , salad veg fish fresh tinned mackerel salmon sardines pilchards etc

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