My JPouch's 4th Birthday

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Poorly Me
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Posts: 6
Joined: Mon Feb 27, 2017 8:14 pm

My JPouch's 4th Birthday

Post by Poorly Me »

Hi All,

Been quite a few years since I last posted but just a quick visit to tell you all how I'm doing 4 years on since takedown.

My Fred...always referred to by his name... has honestly been just wonderful most of the time.
I've never had an accident..touch wood.

Most days I empty pouch within 10 minutes of getting up, possibly again 1/2 hour later...cos I haven't sat on loo long enough 1st time, then I don't empty pouch again till about 4 or 5 pm. I take a Loperamide most mornings...I forget! probably another 2/3 loo visits before bed. Rarely sleep through night as need a pee and empty probably about 5 ish. Believe me folks, that's a result!

Honestly some days Fred misbehaves for no reason and I have liquid output, Brunei bum, multiple trips in quick succession or awful wind in pouch.....I have no rectum so can't trust a stand up fart so often need to go to loo to fart.

Yep I do eat things that Fred doesn't always tolerate...cheese, chocolate but TBH I can live without both....Happy Fred Happy Me.

Today's diet...Porridge made with almond milk (Fred not fussy for dairy) with stewed Apple through. Home made veg curry soup ( at least 5of my veg a day), 2 bits caramel chocolate, gallons of tea, 2cans Diet Coke and Baked Rice with Sea Bass and veg for dinner. Couple of huge strawberries wee while ago. HAPPY BIRTHDAY FRED !!

I had one mild bout of pouchitis a few years ago which as treated with antibiotics. I take Acidophilus, Turmeric and fish oils every day. I take 4 Loperamide throughout the day mainly, more if on the sauce or bad food choices ;)

I jog...sometimes. I golf, ski, walk dog for miles. Regular trips to Abu Dhabi to visit daughter 7 hr flights no probs...planes do have toilets.

I know some people have trouble with their JPouch and I count myself very fortunate to love mine BUT I do work very hard to keep Fred happy and me fit, healthy and slim. If Fred spews out certain foods I eliminate it for a while and retry again.

Fred 9/10 cos he isn't perfect but I love him. I chose to have pouch surgery as I didn't want a bag for life though I know if Fred misbehaves that I could happily live with a new stoma but I'll keep fighting for my boy!

Mr A Windsor my wonderful surgeon 1000000/10

Happy Days.



rogalin47
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Location: Hereford

Re: My JPouch's 4th Birthday

Post by rogalin47 »

Hi poorly me
Great to hear you're doing so well and happy birthday Fred :party:
Thanks for sharing such a positive, upbeat and honest post. I opted for a permanent stoma as I knew a pouch wasn't for me, Norman will be four in April. We've chosen different things but both of us are happy with our decisions, at the end of the day it's just great to be uc free isn't it?!


21 years of evil UC over on 6th April 2013, welcome to Norman the stoma whose given me my life back!!

Poorly Me
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Posts: 6
Joined: Mon Feb 27, 2017 8:14 pm

Re: My JPouch's 4th Birthday

Post by Poorly Me »

Hi Rogalin,

Great to hear that you are well too. Time flies eh?

LIfe now for us both is just the new normal. I shudder when I think of how awful life was in the period running up to surgery. A very sad time but long forgotten normally.

As I said life isn't perfect and Fred an utter inconvenience sometimes eg if I'm going to a class and Fred having a bad day I have to cancel, or if I'm out a long walk and I can feel a pouch full of a wind bouncing off the pouch walls can be rather uncomfy. Thank goodness I have good sphincter muscles....I'm still doing kagels....when I remember.

Well done you Rogalin!

Poorly Me x



rogalin47
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Location: Hereford

Re: My JPouch's 4th Birthday

Post by rogalin47 »

It's funny how quickly those awful uc days are forgotten and become a dark and distant memory. Four years ago I was in hospital and very poorly, in fact the previous few years had been one constant flare with numerous hospital admissions. I had no quality of life, things were horrendous and affected my whole family as I was virtually housebound and tied to the loo. Fast forward four years and I'm never home! Life couldn't be better

Admittedly it's been a bit of a bumpy ride but I don't regret a thing. Long live Norman.....and Fred!! :great: :great:


21 years of evil UC over on 6th April 2013, welcome to Norman the stoma whose given me my life back!!

Karencraig
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Joined: Fri Apr 15, 2011 9:51 am
Location: Rochdale Lancs

Re: My JPouch's 4th Birthday

Post by Karencraig »

Hello you!

So pleased to hear its gone well and Fred scores an impressive 9/10. there should always be room for improvement!

Yes, remembering the horrible dark days reminds me how lucky I am. 5 years this week since my surgery. Good grief only feels like yesterday I was on here crying!


EX UC sufferer,surgery on 1 March 2012!!! Marvin (Stoma) became my life enhancer.

baggiedaz
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Joined: Tue Jul 24, 2012 1:28 pm
Location: Worcestershire

Re: My JPouch's 4th Birthday

Post by baggiedaz »

Hi McHolly !

Great to hear how well you are going along with your best mate Fred.
I think you have summed up pretty much how Its gone for my J Pouch too(2 1/2 years on now for me) .
Most days are fine with the occasional not so good but if that happens there's usually one person to blame. I have to go the loo when I get up and usually once in the afternoon. Early evening is usually a bit more active with a couple of visits and one before bed. Food wise I eat everything I used to pre UC but avoiding over doing the greens and too much chilli can burn like mount Etna on the way out. A few drinks are fine too and believe it or not tend to slow the activity downstairs :D .
So yes glad I went for the J Pouch although I did take some persuading but know I could cope with a stoma if I had too in the future. For me Mr Radley at Birmingham QE and his little robot friend performed a miracle - there was no temporary stoma and takedown but straight into the Pouch functioning - I did wonder early on what the bloody hell I had done but with some help from the old class of 2012 things calmed down pretty soon. Best of all since the last surgery the Baggies are the only team in these parts in the Premier League ( another miracle !)
Anyway great to hear everything is going well for you.
All the best McDaz


Sub total colectomy carried out 07/11/12
J Pouch formed and activated 30/07/14

Karencraig
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Joined: Fri Apr 15, 2011 9:51 am
Location: Rochdale Lancs

Re: My JPouch's 4th Birthday

Post by Karencraig »

Hello Baggie Daz. Great to get an update from you too and to hear everything is going well. Was only thinking of you the other week.

Rogalin and I are in Brum next weekend - Purple Wings ostomy photo shoot. We are paying for the privilage of posing in our undies AND having our photos taken!!! Link on thread Purple Wings if anyone wants to sponsor us for being that mad!


EX UC sufferer,surgery on 1 March 2012!!! Marvin (Stoma) became my life enhancer.

Karencraig
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Joined: Fri Apr 15, 2011 9:51 am
Location: Rochdale Lancs

Re: My JPouch's 4th Birthday

Post by Karencraig »

Daz, thank you!!!


EX UC sufferer,surgery on 1 March 2012!!! Marvin (Stoma) became my life enhancer.

baggiedaz
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Posts: 145
Joined: Tue Jul 24, 2012 1:28 pm
Location: Worcestershire

Re: My JPouch's 4th Birthday

Post by baggiedaz »

You're welcome Karen
We are in Brum next Saturday too to see my daughter's handywork - her and 4 friends have made a costume for the Bullring bull in aid of the Little Hearts Charity so if you have chance give us a bell if you want to meet up. (Understand if you are too busy doing all the Supermodel stuff after the shoot !) Hope it goes well and we think it's brilliant what you are doing. All the best Daz


Sub total colectomy carried out 07/11/12
J Pouch formed and activated 30/07/14

Poorly Me
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Posts: 6
Joined: Mon Feb 27, 2017 8:14 pm

Re: My JPouch's 4th Birthday

Post by Poorly Me »

WooHooo MacDaz and Karen, me old pals!

We really did share a lot didn't we...Class of 2012.....wow so long ago. We were lucky to have each other's support as we approached our surgeries.

Yep MacDaz very similar pouches! I never blame Fred, only me to blame. I do push him to the limits sometimes. I do wish I knew why sometimes I can knock off a bottle of bubbly and not be up to loo all night/be up all night! It's now 7.30 and I've only emptied pouch once today!
My boy lives in Stourbridge now..would be great to catch up with you all again.....remember when we met up we all had our wee bags?!

Karen, Hiya and can't believe 5 years! been reading back on your post and you seem to be going along just fine too..happy days. And yes very dark days for us all. You still dancing the night away, Karen??

Rogalin..yes life could not be better! Even bumpy times as you say...amazing how they disappear into the past tho isn't it. Stay well!

Well done Girls with the modelling...brave! look forward to pics.

I have a pal who is struggling with UC meds at the mo...currently back on Pred & steroid enemas..... make me soooo tearful remembering same. I hated enemas the most out of all the meds. I only had UC for 3 years before surgery and with hindsight I woulda gone straight for surgery rather than frequent stays in hospital, side effects from meds, unable to leave the house and ridiculous numbers of loo trips.

And onwards we go with our inside/outside bags!! Life is good eh. Lovely to catch up too

Holly X



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