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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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3 hours ago

So I posted last night.hours before I shit the bed when I go sleep...
Well I managed 4.well 4 b4 noticing.
Pic in comments am I tho only one who has them this badπŸ‘‡πŸ‘‡
Don't look if don't like it
Slightly demeaning
Nappys on there way
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Haha sorry to laugh came here for the pic! I know how you feel though mate I go through phases every so often. I'm having to wear an adult nappy at the moment as I don't know what nasty surprises I'm going to find when I wake up! πŸ˜…

4 hours ago

Hi has anyone been put on a liquid diet ....did it help....I saw Dietician yesterday she's put me on a liquid I have to have 6 to 7 meal replacement drinks a day for 6 weeks...its supposed to reset my bowel as I I'm stuck on just eating boiled rice/pasta...I then will reintroduce small amounts of food....just hoping it works...as even biologics aren't helping....and I really don't want to go back to a stoma ...just want to see if it worked for anyone else.... struggling to stay positive at the moment with all this😞
Thank you
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Modulen? I’ve done this many times.

Do you have a pouch?

18 hours ago

How much loperamide does everyone take? Do you take it every day? I’m on 3 a day ... See MoreSee Less

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I take every day in the evening

6 a day. 2 tablets 3x a day.

9 , three morning noon and night

Depends where I'm going to be during a day, for an office day its 2 before each meal, if I need to travel longer I'll up the dosage.

None. It makes me feel bunged up and I feel the urge to go but nothing comes out. I prefer looser stool so it's easier to empty

3 a day normally 1 in morning 2 before bed

I take three, three times per day

I take 4 a day x

I take 2 breakfast. 2 lunch 2 dinner 2 before bed. I have taken 3 at a time as advised by hospital but they caused cramps

I don’t take any never have

None.

1 breakfast, 1 bed time

Zero

25 plus 4 x 30mg codiene and still water high output!

4 capsules before every meal

8 a day x

At first I was on 4 x 4 a day . 6 months post stoma takedown I’m now on 2 a day

I take 4x 2mg Loperamide tablets 4times a day. 1hr before each meal & before I go to bed. Plus take 2x 30mg Codeine Phosphate 4times a day he before meals and before bed

10 x 2mg daily. On bad days 20. Sometimes that doesn't even help.

Does everyone get lopermide on prescription? I asked for a prescription and was told to buy over the counter alternative.

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18 hours ago

A month today I go into hospital to have a ileo back and j pouch disconnected(but still in there) as although I’ve tried so many things to help with the emptying issue the continuous pouchitis and the butt burn,I just feel I need a rest from it all.
I need sleep and to eat properly again.🀞🀞
A few questions from anyone that has gone back....
How was the surgery and recovery and is life better?
Should I go for a loop or end as I previously had a loop but been told the end is better?
Unfortunately I couldn’t get an appointment with the consultant at St Marks like I wanted till end of April so I am going back to the hospital I had my other surgery’s St Thomas however having a different consultant as mine left.😞
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I had surgery for the same around 18 months ago. I was home after 5 days. Unfortunately my gut decided it would stop working, which can happen, and 5 days later I was back in. However once I got over that it was great. I dont have to run to the loo anymore, no more pouchitis as the pouch no longer gets inflammed as nothing is there to irritate. I do pass mucus from it every three weeks or so. I have an end ileo and that suits me well. Hope all goes well for you xx

Was your other consultant Ed Westcott?

I had my pouch disconnected in 2018 & an end ileostomy made. It’s only an option if they can keep blood supply to the pouch. The end result is my stoma doesn’t stick out anywhere far enough & I’m constantly battling bleeding sore skin around my stoma. I had a loop previously & I think I’d still pick an end ostomy to be honest. I had my pouch disconnected due to 11 years of chronic pouchitis. I was advised by professor Clark at St Marks to try disconnection & I’m so angry I didn’t fight harder for total removal which is what I really wanted. 5 years on and I’m still battling chronic pouchitis. Recovery wasn’t too bad as it was keyhole, I was probably out of action for around 4 weeks. Life is better without a doubt, I’m not up all night on the toilet or constantly worrying if I can go out or what I can eat. I’m still passing a lot of blood & mucus from my pouch but it’s more manageable than the constant pooping! I’m currently having a last ditch attempt at controlling the pouchitis with Humira, should that fail it’s the big op, total removal & BB x

I am waiting for surgery at Southampton and having my pouch removed and strictures repaired , back to a stoma. I’ve got crohns in the pouch now so I have no choice . Scared stiff !!! But needs must for us .

End elio is always better and easier to manage than a loop elio

Was in a similar situation as you , j pouch currently disconnected, back to a temporary stoma (loop) for the last year , although feel much better I feel the loop is a pain I the arse , do t like it Got to decide whether to keep or go back

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1 day ago

Hi everyone i have never met anyone who has a pouch (mine nearly 42years old)and was wondering if there are any meet up support groups in Cornwall? ... See MoreSee Less

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I'm in Dawlish. Had mine 28 years nearly.

I'm Newton Abbot, had it 28 years

Its great if you can meet fellow pouchees face-to-face, but the next best thing is to join our regular monthly virtual get-together which we host on zoom, the first Monday of every month - next one being this coming Monday, 6th February at 7:30 pm. You can find out more information and register using the link below. pouchsupport.org/attend-our-regular-monthly-j-pouch-forum-on-zoom/

I’m in Newquay, had mine about 28 years 😊

Hi Pamela, how is your pouch after so long? We have a couple of ladies with 42 year pouches who regularly join the pouch chat forum that Gary Bronziet has highlighted above. Would be nice to get you together if you fancy joining

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15 hours ago

Butt burn can be excruciating and the bane of my life....arghhh ... See MoreSee Less

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Speak to your consultant and ask to have a malabsorption. The large intestines absorb the salts the gallbladder produces to break down fats. These salts can really cause butt burn. If you have the test you will be put on medication to help naturalise the salts. Which helps with butt burn. It’s what was happening to me and the medication really helps my.clevelandclinic.org/health/diseases/22722-malabsorption

Adele Watson

Run a hot as you can handle sit bath, and sit then apply cream and repeat as many times as you need. Hope it helps! Horrible the butt burn spent many nights just in and out the bath to soothe.

12 hours ago

So I've been up since 9am Tuesday
(U all proberly read my issue)
Pondering trying to sleep.
But the normal positive me is feeling pessimistic....
What's the point,il shit the bed in 1hr and bk up again!!!!
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It’s hellish at times , that’s me up tonight again as well . I just tell myself Al sleep tomoro night

I was up Tuesday night too

1 day ago

Hi all, I have my final surgery sometime in the next couple of months. Just wondering how easy it is to cope the few days/week after that surgery, with having to use the back passage again? Did you need to use the bathroom urgently? Where you able to get there on time with the reduced mobility from surgery? (My surgery will be open not keyhole). I’ve had my stoma for about 10 years so will be a strange sensation again. ... See MoreSee Less

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The weird thing I found was trying to stretch my arm back to wipe!! Yes you'll have urgency xx

The body is going to be getting used to doing things differently and it'll take a while for you to recognise the various 'feelings' from part of the ilium (it has around 10% of the nerves of the colon) doing what is wasn't evolved for; prepare for you, the body and ileum to re-learn each other.

Have you had a double-barrelled stoma for 7 years?! In which case you’ll have been producing and poohing out mucus? I didn’t have any more urgency than with the mucus, I don’t remember it being bad at all. I went back to playing rugby a few months after so it can’t have been too bad. Best wishes for the op

I'm like David, urgency wasn't an issue for me but my consultant had made sure that I had seen a pelvic floor physio and I did pelvic floor exercises 4 times a day before the final op which I think gave me good control. There is an app - NHS Squeezy - which is great for this. I'd really recommend thinking about strengthening your pelvic floor, especially as you have had your stoma for such a long time. Also, I think they will reintroduce food slowly after surgery so it takes a while for everything to start to work and pass through. I didn't find that it was sudden and dramatic but I expect we are all different. I found the dreaded 'butt burn' was my main horror for the first couple of months. Lots of people recommend calmoseptine cream and I found it gave some relief, plus soaking in the bath, washing and patting instead of wiping etc etc. Very best of luck, I hope it goes well for you πŸ™

21 hours ago

Day 9 J Pouch Surgery BACK HOME BABY! Wow this has been a hell of 9 days! Finally made it home this afternoon took ages with blood tests waiting for results and then you can't go CRP markers are to high to me saying I'm going home I mentally and physically need to go home! They agreed and I've come back home. Life with ain't that bad don't even notice it half the time even if it's temp I'm not bothered. Pain wise I'm pretty sore but not horrific. Mentally drained and will be for a while. Looking Forward to a peaceful night's sleep tonight. Mentally this was the hardest part the fight.

THANKS TO EVERYONE WHO SUPPORTED ME IT MEANS SO SO MUCH! I'M SIGNING OFF NOW FOR A WHILE SO NO MORE DAILY UPDATES FROM ME ANYMORE.
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Day 9 J Pouch Surgery  BACK HOME BABY! Wow this has been a hell of 9 days! Finally made it home this afternoon took ages with blood tests waiting for results and then you cant go CRP markers are to high to me saying Im going home I mentally and physically need to go home! They agreed and Ive come back home. Life with aint that bad dont even notice it half the time even if its temp Im not bothered. Pain wise Im pretty sore but not horrific. Mentally drained and will be for a while. Looking Forward to a peaceful nights sleep tonight. Mentally this was the hardest part the fight.  THANKS TO EVERYONE WHO SUPPORTED ME IT MEANS SO SO MUCH! IM SIGNING OFF NOW FOR A WHILE SO NO MORE DAILY UPDATES FROM ME ANYMORE.

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All the best

Good luck lots of rest πŸ‘

Yes I know how you are feeling, I was told I could go home after 8 days, got home and then had to go back in the next day, ended up being in for over 3 weeks, I was going crazy. But just to let you know within a few weeks you will feel like a new guy with you whole life ahead of you, stay stronge and di what they tell you to do.

Glad your home. Best place to get rested up and to get some decent food as well. πŸ‘πŸΌ

So pleased you're home but do take it easy !!! Also, your wall of photos/art is AMAZING ! Good luck with everything. Keep us posted when you're up to it x

Good luck. Onwards and upwards now.

Brilliant post πŸ‘ πŸ‘ πŸ‘ πŸ‘ πŸ‘ Rest up, be kind to yourself and have a bloody good kip πŸ’€ Keep us updated on your recovery πŸ’™

Nothing beats sleeping in your own bed, sweet dreams

Pleased you are home, best place to recharge mentally and physically now. Love the wall, kudos to your wife 🀩

Glad you’re home. Nothing beats your own bed. Take it a day at a time

Glad you're home, get that much needed rest now xx

Great news that you are home take care x

Nothing like your own bed, I was 9 days in hospital too! I practically begged to go home. Easy does it now xxx

Keep focused and take each day slowly. Things will get better

Well done! Onwards and Upwards now!

All the best to you! Lots of rest and take care of yourself!

All the best chapπŸ‘

Glad you're home, I was in for a month leaving my 7 year old, tough for sure

Take care πŸ’œ

Glad you are home , All the best and remember baby steps .

You’ve done the hardest part mate. Well done. Have a speedy recovery xx

Top man….stay strong πŸ’ͺ πŸ’ͺπŸ’ͺπŸ’ͺ it’s one tuff journey!

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