Ileostomy surgery tomorrow - relieved, excited and a little intrigued!!

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I saw the naturopath on Friday.
She is taking a slowly slowly approach - which I prefer.
I've been having a few problems with colitis in the stump - which is giving me painful cramping and urgency.
Since taking the medicine she gave me .... No cramps, no colitis. In fact - haven't done a mucus poop in two days. And it feels like my fissure is healing up.
I'm not sure if its too early to tell - but I'm a bit amazed.
It might just be a coincidence.
I've got a shocking head cold/flu and have had terrible fatigue over the weekend .... but my bum is in great shape!
I hope it lasts!!
 
Oh - I also had my first leak yesterday.
I'm not even sure how it happened.
Went to the bathroom, happened to look down and noticed a few stains on it - which I was surprised to see.
I lifted the bag up to have a closer look underneath - and liquid just came gushing out - catching me by surprise. Lucky I was over the toilet.
I have a feeling the two piece seal might have been faulty.
But it gave me a heck of a fright.
And a nice mid afternoon splash in the shower to clean myself up!
 
That reminds me of when I went to change my bag yesterday - took the bag off and went to reach for a wet chux to clean the skin but forgot to cover the stoma with loo paper, didn't I. It shot liquid right across the bathroom ricocheting of the vanity back all over me, the toilet and floor. I reckon its 3 feet at least to the vanity and there was enough power to splash back! Needless to say all I could do was laugh.
So whats everyone else's record?
 
I've had poop bullets hit the wall from about 5 ft. Farts are a powerful thing!!!
 
Wow!! Three feet and splash back!!
That's impressive!
Mine's a dribbler. He dribbles everywhere.
Just dribbley bits.
Leaves a little trail for me to follow!
He's actually a little grot.
 
:ack: Stan is a 'shooter' sometimes too! Been in the shower and he's hit the far wall, about 4.5 foot. Bless him.
 
I agree with the twin thing, only I had crohns way before I had twins?

About the great explosions- yesterday I baked red velvet cupcakes for a friends birthday, and at the BBQ I had some baby beets and a glass of red.

Well, last night when I was in the shower, with a naked miss piggy, I bent down to get the shower gel and miss piggy exploded. It was like the shower scene in phsyco. Red squirt every where. I screamed a little in shock, and Paul came running in. He got quiet a shock, especially since I was laughing like a mad woman by that stage.
 
Jaano711 said:
I agree with the twin thing, only I had crohns way before I had twins?

About the great explosions- yesterday I baked red velvet cupcakes for a friends birthday, and at the BBQ I had some baby beets and a glass of red.

Well, last night when I was in the shower, with a naked miss piggy, I bent down to get the shower gel and miss piggy exploded. It was like the shower scene in phsyco. Red squirt every where. I screamed a little in shock, and Paul came running in. He got quiet a shock, especially since I was laughing like a mad woman by that stage.
Click to expand...

:rof:
 
Jaano711 said:
I agree with the twin thing, only I had crohns way before I had twins?

About the great explosions- yesterday I baked red velvet cupcakes for a friends birthday, and at the BBQ I had some baby beets and a glass of red.

Well, last night when I was in the shower, with a naked miss piggy, I bent down to get the shower gel and miss piggy exploded. It was like the shower scene in phsyco. Red squirt every where. I screamed a little in shock, and Paul came running in. He got quiet a shock, especially since I was laughing like a mad woman by that stage.
Click to expand...

Lmao!! :yfaint::runaway:
 
wow, just noticed this thread has had 20765 views! Samboi, you are popular. :)
I wonder what the record is?
 
I read one when I was really sick (I'd gone to the Adelaide Festival to see Ennio Morricone - I saw him play - but spent the remainder of my weekend there feeling miserable in a hotel room - it was pathetic!) and that thread had 40k+ views.
It was incredibly inspiring and certainly made me feel better about my situation.
 
Update on recent happenings.
Went to GI on Mon so we can address the 30% of bum that needs to be healed before CRS will perform Stoma reversal. Have decided to hit it with butt facials - aka Pred foam twice daily to get inflammation under control.
It's been a month since naturopath visit. I feel fantastic - best I have felt in 18 months. Have started exercising again. Just daily walks - but feels good.

Broke up with new lady friend. Nothing to do with being sick etc.
Just wasn't going to work out long term.
Feeling totally ok about it.

Booked a trip to China to see the Great Wall in July.
This will be pre-reversal - in case something goes wrong and I can't travel post surgery.
Interestingly - was given a lecture by my GI about where I'm allowed to go for holidays. She said Humira kind of limits where I should be going and has said China is semi ok. She was not impressed about my trip to Cambodia last year.

The fissure still comes and goes. It's a real little pest!
 
Ohhh, you'll LOVE the butt facial! Make sure to wear protection in the undies though. You've been warned! Seriously though, the foam is much better than shoving horse pills up there and walking like a duck through the day!

The stuff works, and that is what matters.

As for them frowning on where you go on holiday...ppffftt! You have a life to live after all!!!!!!!!!
 
Yes i was told not to travel to Asia when I was on Humira. Must be cos you are prone to catching nasty bugs. China sounds fantastic. You certainly do get around, travel I mean. :)
Sorry you broke up with the new lady but if it wasn't going to work then it wasn't. Are you travelling with anyone to China?
Good luck with the butt facials,
:heart: anna
 
Going solo in China - but trying a small tour group.
Thinking its not safe to go fully solo.
I usually try to go away every year - but on a reduced income - may not be possible afte this years trip.

Misty - will the butt foam really leak into my pants?
I'm a bit worried about this now ...
 
Onwards and upwards hey Samboi. Sorry to hear your single at the mo.

Sounds like you have a really great trip to look forward to. Just don't eat anything dodgy looking.

As for the butt foam, I hope it works. I used it way back, was a little messy, but soothing to a sore arse. Just use it when you get home for the day and going to bed if you think it may leak. I can't remember having problems, but I did have a working arse back then.
 
Started the butt facials today.
The GI wants me to hit the inflammation hard - with four applications per day.
Has anybody else managed that many in a day??
It seems to be quite a lot!

The foam also gives me a burning sensation in the anal area.
I'm guessing this is where it's inflamed etc.
Anybody else experienced a burning sensation?

Also had a minor panic tonight.
What happens if the fissure and inflammation don't heal?
Will I have my bag forever?
I just want to be better again.
 
I can remember the foam stinging. I suppose the skin is very red and inflamed.

Don't go jumping ahead Samboi, you have just started this course of treatment. Just give it a chance to work. If you get yourself stressing you may well negate any benefits from the treatment.

Keep strong.

Janette
 
No point worrying about what might be cos it well may be might not. Or definitely not.
Take each day at a time and don't worry about the future. Theres no reason for this treatment not to work and if it doesn't then something else probably will.
But I'm sending you lots of hugs anyway.
:heart: anna
 
Echoing the advice above. It's pred...it usually always works. I'm surprised they haven't given you the butt facials before this tbh.

Relax, let it do it's work. We have all our digits crossed.
:hug:
 
Thanks ladies - appreciate the support.
The stinging has actually ceased.
I've done a few applications today and think four is achievable.

My wobbly moment has passed.
I'm feeling a lot more confident about it healing now.
I actually feel great at the moment - which I am so thrilled by.
At the moment - reversal and remission seem like real possibilities.
Woo hoo!!
 
Samboi said:
Also had a minor panic tonight.
What happens if the fissure and inflammation don't heal?
Will I have my bag forever?
I just want to be better again.
Click to expand...
:hug: I know that you don't want it to be that way, but perhaps it would help if you tried to come to terms with the possibility that, in order to be better again, you might need to have your bag forever. It might never happen, but worrying about it causes stress that you don't need.

I have to admit that I'm a great one to talk! I couldn't even think about the possibility of having a bag and I certainly couldn't talk about it with anyone - I just started crying. And so I left it far too long and the disease had affected a very large area around my rectum. But, as we have talked about before, my life has actually expanded since the op. I'm off to Lord Howe Island at the end of April. :)
 
Lucky you Susan, i hear Lord Howe is beautiful. My sister in law worked there for several years and loved it.
 
Thanks Susan.
On an intellectual level - I have got used to the possibility that the bag may be a perm fixture. If not this time - perhaps next time.
My CRS was a lot more positive though.
I'm feeling pretty ok about it though.
I'm determined to conquer this.
But I'm also being realistic about what possibilities may be ahead of me.
 
One week into butt facials and I'm pretty happy.
Still get occasional burning sensation - not sure what that is.
Urgency has gone (only had it once - ran to the bathroom and produced a little fart from the air being pumped in!)
No more cramping first thing in the morning and mucus poops are formed rather than liquid.
Things are looking promising for reversal!
Although reversal won't be until Aug or Sept.
 
Zippity doo daa! Wonderful stuff those butt facials! Yes, all my paws are crossed...indeed they are. (we have lots of paws in the house)
 
Right now I have 2 Irish Terriers. Normally we have between 2 and 3. But because I do Reiki and Animal Communication...there can be more! No cats allowed in here, the Irish would terrierize them!
 
I'd never actually seen an Irish terrier so just googled them. They are gorgeous. Sort of like an Airedale without the dark markings.
 
Thanks for checking in Janette.
Butt facials are working wonders!
The combination of treatment, naturopath, meditation, exercise, yoga and combo paleo and low res diet = I'm in best shape I've been in for 18 months.
I feel fantastic and I will be very ready for reversal come Aug-Sept.
I've got my energy back and I've finally resumed my regular life as it was before I had my flare.
I am delighted. It's been a long and arduous road.
But I have made it.
 
I've been following your progress and am delighted with your news! You've beenthrough the mill ( and back) and certainly deserve some peace...long may it last!:ghug:
 
Caught up with my GI on Mon.
Blood tests flagged a few areas she needs to monitor - iron, thyroid and for some inexplicable reason - the inflammation markers were elevated.
This was a surprise as I feel great!
Absolutely on track for reversal in Aug or Sept.
I'm doing yoga 2-3 times per week and walking half an hour to an hour or more every day.
And I've finally put on a few kilos.
Yippee!!
 
Yippee, about putting on kj. I've been walking half an hour every day and have lost a couple of kj - which is yippee for me.
I wonder why the inflammation markers were raised? Was the doc concerned about it? And is the thyroid something new? Also wondered if paleo/low res restricts red meat so affecting your iron levels? Sorry, I've got my Mum hat on now.
 
That's great you're out walking!

Doc is going to monitor the areas identified as potential issues.
She said shed not that concerned about it right now - unless it becomes a pattern.

And thanks for your concern with your Mum hat on!!
I'm eating lots of red meat and veggies!!
Now - I'll just eat more!!
 
Hi Samboi,
Sounds like you are doing really well. I hope that the bloods improve, its really great to hear you are feeling so great. Fingers crossed that it all sorts itself out for you.
 
Yes I did have a late night. Popped on here about 10.30 and couldn't get away. Amazing how time flies when you're on the forum.
I actually stay up til about 12 every night to have a last empty and then I can get thru til 6 in the morning before having to empty again. I go back to sleep after that though.
 
I'm a bit over those night time empties. For some reason some nights I can go all night without an empty, others I am up 3 or 4 times. No wonder I feel like i'm looking after a new born somedays!
 
Haven't checked in for awhile.
Had my kidney stones blasted yesterday. One was like a giant rock.
So "working from home" today - as you can see .... :)
Recovery from this blast has been a lot more comfortable than last years episode - but that could be the Endone talking!
The urologist is hoping when the stoma is reversed that they will stop forming so readily.
There are just so many and they form so quickly!

I'm off to Brisbane this weekend to attend a ball. I had grand plans to wear a crisp white shirt with my suit - then realised that the bag would be really visible through it. So have opted for basic black instead. Phew!

And I'm off to China in three weeks - my last trip with my stoma!

Appointment with surgeon to discuss reversal is on 18th July - all on track for August reversal. I'm excited!
I've also managed to put on 4 kilos in preparation for the operation.
A little bit pre-emptive - thank you chips and chocolate!
I've started eating most things with impunity - even peanuts! Still not willing to try corn though. I've been growing veggies in my garden - so have been enjoying a veggie feast!

My stoma itself seems to have developed a new little exit just next to where it is attached to the skin - on the stoma itself. Sometimes the output sneaks under and eats away at the barrier ring - so I have been getting a little bit of burning in that area. Ouch! But I will survive the next couple of months until the reversal. I've made it this far ok!
 
Great news Samboi, stones blitzed, china trip and reversal on its way. Yippee!
The burning bit sounds very ouch though, but bearable since an end is in sight.
I envy your veggie garden - the possums eat everything we put in and covering with mesh is so ugly. Unfortunately our neighbours behind have a very large (but very beautiful) fig tree that is slowly blocking more and more of our sun so hard to find a patch to grow vegies anyway.
I'm also on to eating anything and everything - but not corn, I had too many leaks in bed when I ate it so am wary of it. Not sure why it caused a problem and not other things, maybe I'll get brave and try again.
We're actually away at the moment, up the coast in our caravan. the weather is a bit iffy but its nice to get away.
Have a fab time in China,
:heart: anna
 
It's my last day in China - and it has been a breeze.
My hotel in Shanghai was actually just near the stomatological hospital! I refrained from going in to have a look.
I've had no problems with dehydration in the sweltering heat, no issues with food and no problems with using the bathrooms - including squat toilets on the trains.
My medical supplies occupied over half the space in my suitcase .... which is now empty and awaiting shopping to fill it back up. One of the benefits of having CD!
I was fretting about the trip - but I had absolutely nothing to worry about.
Yee ha!!!
 
That's terrific to hear, Samboi. I'm so glad that you had a great time and none of your worries became reality. That should really boost your confidence.

I understand what you mean about the medical supplies. I'm off on a 10-day flying trip to Northern Australia, leaving tomorrow morning early. We are only allowed to take 10 kg and a lot of that will be medical supplies - ah, well one change of clothes will have to do. I must admit that, last night, I had the usual nightmares about not being able to find a clean, unoccupied toilet and having leakages in bed, but it'll be OK.

I have difficulty with squat toilets unless I am somewhere that I can off my trousers. I can't seem to managed holding my lower body clothes out of the way and emptying my bag into the pit.
 
Excellent news. So glad you have had a wonderful time. It makes the holiday even better when you make it through without any of you fears turning into realities. Well done you!!
 
I live in fear of splash back in the squats!! Eek - my worst nightmare!
Susan2 - I actually carry clips and freezer bags just in case - based on your system and advice. Have a great time on your trip!
 
I was bailed up exiting at Beijing Airport as they give you a full body pat down.
They did not know what to make of my Stoma.
I had been alerted to this possibility by a woman who wrote to my local ostomy magazine - so I am grateful to her for sharing her experience as I was forewarned it might happen.
It got a swab for explosives.
They insisted on having a closer look.
Which is fair enough - I'm glad they're very thorough.
They did keep grabbing at it though - and I kept pushing their hands away.
So after insisting on privacy - I gave them a closer look.
There was no room to go to - I was whisked behind the controllers booth.
I lifted my top and unclipped the bag and showed them what lurked beneath.
They recoiled in horror and were very apologetic.
I was sent on my way.
I bet it rated a mention in the tea room in their workplace last night!
 
Saw the CRS today.
EUA on 26th July to confirm that the butt is all healed up.
Actual reversal surgery is scheduled for 16th Aug.
Excited much!!!!!!!!!!!!
 
Yee hah! Thats excellent news.
Glad you had a great trip to China too.
And thanks for the story about the airport checks. We're off to hawaii in Nov and I'm dreading it all. Silly and I know once i'm on the plane I'll be ok but in the meantime I keep thinking of everything that can go wrong - leaks on the plane, stinking the plane out, having to clean the whole toilet, occupying one of the toilets too much ,you know that sort of thing...... :)
 
Had my EUA this afternoon.
CRS has confirmed that the butt is all healed up and ready to go.
The file was left on the table next to me in recovery - so I had a sneaky peek at the correspondence - the CRS described the condition of my perianal disease as appalling and in need of urgent surgery. Gave me a glimpse and a reminder of how bad things were all the way back then.
Surgery is booked in and ready to proceed on 16th August - yee ha!!
 
Isn't it fun to get those sneaky peaks at our medical records! amazing what you can learn.
Great news about the op and butt. Makes the stoma well worth while.
I'll be counting down the days with you.
But you must promise to drop into the stoma sub forum. As 2thy says "you'll always be one of the cool kids".
:heart: anna
 
I won't be disappearing.
The kind souls on this site helped me through my darkest days.
I need do the same for the next person in the same spot.
 
I think I'm having a disaster and I am not sure what to do about it.
Yesterday I started getting swelling and it feels like I am about to have a recurrence of the fissure that led to my whole predicament.
I have felt it and it is swollen, but I don't think the skin has broken yet as it is not really painful.
I have an appointment with my GI on Monday and I am not sure if I should mention it - in case she cancels the surgery. I can't believe that after 6+ months of remission - it has reappeared two weeks before my reversal is scheduled.
I am desperate to get the reversal and have my heart set on it. In reality I know that it can't be done if the fissure comes back.
I am very distressed about what has happened and I am trying to work out strategies to calm the potential fissure.
It has also made me feel anxious that the fissure will return once the reversal has been actioned. The CRS said this happened in about 5% of reversals.
I cannot go through the suffering and pain I went through before the stoma was formed - it was just excruciating.
I am hoping predfoam 3-4 times per day, daily sitz bath, calmoseptine and using the bidet will prevent its arrival.

I cannot believe this has happened.
I am desperately hoping it will clear up over the weekend and I will not have to cancel my reversal.

Any suggestions?
 
Hi Samboi
wave4.gif


I really feel for you. I can only imagine how much of yourself you have invested in this reversal surgery but, whatever the outcome might be, you must tell your GI on Monday. Even if it seems to have subsided, you should still mention it - it might be OK for the surgery to go ahead or it might have to be deferred but, if you have the surgery with it there, your body will have to try to cope with healing both areas at once. Not an easy thing for it to do.

In the meantime, try everything that you can - without going overboard, of course. :smile:

Keep strong. :hug:
 
***shakes fists in the air***
How dare a fissure try and make an appearance now that your reversal is right around the corner. Hrmph!:stinks:

I know how disheartening this must feel, but can you just imagine all the pain and complications you will face if this was not detected prior to the reversal? I suggest making your GI aware of the situation so you can fight it together.
Of course this means a delay to the much anticipated reversal, but it also increases your chances of a successful outcome in the long run, and you really owe that to yourself.

I'll be rooting for you, Samboi.
 
Thanks Susan.
If it does not disappear - I will be sensible and defer the surgery.
You're right - only one spot healing at a time.
More is too much.
I'm just hoping it will disappear as quickly as it has appeared.
And I will follow your advice and discuss it with the GI.
I seriously cannot believe this has happened.
 
All back on track.
I bombarded it Thu. The swelling has gone and no progression of the fissure.
Phew.
I will mention it to the GI on Mon.
Reversal will proceed as planned though.
Very relieved.
 
Just checking in to see how things are going with you, Samboi.
I hope surgery is still going on according to plan, and that you
have no more bumps in this long road you've been traveling on.
 
Hi BMO
Surgery proceeding as planned.
I'm nervous but very excited.
One week to go!!
I'm eating everything not tied down.
 
As usual I have come into this discussion late. So I am glad to read that the problem has resolved and was only a momentary blip.
What did your GI say about it? I assume from above post s/he was not concerned so everything is on track for next friday. We'll all be thinking of you and waiting for reports.
:heart: anna
 
Tomorrow is my big day.
I think I'm prepared. Kinda.
I've actually spent the day trying to not think about it after a fairly excited but anxious week.
My colleagues gave me a beautiful send off.
I'll miss my little guy.
But I am thrilled my journey is almost over.
 
Samboi,
Congratulations, I hope the nerves aren't keeping you awake tonight. Wishing you a non eventful surgery and short but comfortable recovery.

Don't forget to visit us 'bag people', once a baggy always a baggy.
So happy for you.
Janette
 
We'll all be thinking of you and beaming healing thoughts your way. :ghug:

And sending you flowers
flower4u.gif
 
Thank you all for your kind thoughts and wishes.
I went in around 10am and was back on the ward by about 1pm.
I had a reasonable amount of pain around the Stoma site - but this has been managed well initially by morphine, now Panadol.
I had protein drinks last night - but vomited them both up rather suddenly.
I'm hoping to keep my breakfast down.
I'm feeling pretty good.
I plan to have a shower this morning then walk around the ward.
These are my plans - I'm not sure how feasible they actually are!
The wound itself is a little painful - but I could sleep on my side.
It is a pool of blood under a plastic wrapper thingy - so not sure what it actually looks like. They will pierce it and drain it later today - then I can get a look at it.

But so far - so good.
 
Samboi I'm happy to hear this is hopefully it and after this healing you can close this chapter. I hear you on saying "your plan". It's hard to say you will definitely shower, walk or eat when in the hospital, it just depends how you feel at any given moment.
 
Thanks NGNG.
Kept all my drinks down yesterday.
Started solid food today.
Haven't managed a poop yet - but the wind pain is a killer!
It's a good sign that everything is working on a basic level though.
I was hoping to get home tomorrow - but unless a poop appears pretty soon - that ain't gunna happen.
The dressing was changed yesterday. The wound looks pretty good.
Hoping to avoid an infection.
All going well so far!
 
Got home from the hospy today - without having done a proper poop. Which they assured me was ok.
I'm staying at my parents a couple of days until I'm feeling a lot better.
I've now done my first successful poop this evening!
Feeling lotsa wind pain though and spent most of the evening feeling pretty green.
Think I'm in for a rough night.
 
So glad you're home and all is well except for the wind pain. Thats a real killer and NOTHING helps it. I hope it has now passed and you are resting comfortably. Make sure you keep in touch with us all.
:heart: anna
 
I've had my first sign of real trouble tonight.
The old fissure has started to swell and there is quite a bit of anal/rectal inflammation.
It feels internal rather than external though - which is at least one positive.
I had a sitz bath to try calm it, coupled with a butt facial and calmoseptine on the exterior.
There is no broken skin as far as I can tell.
Just quite a bit of pain.
It is worrying me as this is how the whole problem started.
I will be very upset if my reversal fails.
 
Oh bugger. I'm so sorry Samboi. Hopefully its just a minor flare as your bottom adjusts to being used again. Having bottom problems myself at the moment I know how frustrating they are. Just like this whole damn disease!
:heart: anna
 
Thanks Anna.
It is seriously the dumbest disease ever!
I think my butt is just adjusting to re-use.
At least - that is what I'm hoping!
I'm just bombarding it with treatment.
I'm also lucky I have that bidet toilet seat I invested in.
No paper has touched my butt yet.
The next few days will be critical. Hopefully my butt makes it!
 
It's actually really weird just going to the toilet and doing a number one with no accompanying bag empty.
It is too quick! It's very disconcerting.
I sit there kinda wondering what to do next.
 
Samboi said:
It's actually really weird just going to the toilet and doing a number one with no accompanying bag empty.
It is too quick! It's very disconcerting.
I sit there kinda wondering what to do next.
Click to expand...

That's exactly what I imagine myself doing..... "what am I forgetting..??"
 
And I automatically turn the fan on in the toilet - even though I don't need it anymore.
I also used to put my hand over the bag to protect it a little when I'd be walking around or even just laying on the couch.
I put my hand there - no bag! It's kinda weird.
 
Hi Anna
The fissure is being very stubborn - but so am I.
I refuse to yield to the possibility that the reversal was a mistake or happened too soon.
I've been hitting it every few hours with Pred foam. The salofalk foam that worked so well when I had a rectal stump - now - the air pressure from the dispenser is too much and the foam burns like hell. I'm going to keep trying it at regular intervals as I remember it burning a lot when I first used it.
I'm also coating it in calmoseptine.
The upside - the fissure has stabilized and is not worsening.
I'm hoping to return to work in just over a week - so I have that time to tackle it.
I won't return to work until the fissure is fixed though.

How's your fissure problem going?
 
Good you are being stubborn. Just keep on attacking it and let it know whos boss.
Mine has improved a bit with cipro but still a bit of pus and I've finished the course of cipro so expecting it to flare up again. I have to see the surgeon in a few weeks with poss of fistulectomy or seton. Depends what its doing when I see him.
Its not causing any great pain since I'm not using my bottom, it just worries me about what further damage may be going on.
My Gp said to use pred ointment but my gastro didn't mention it and i forgot to ask. Should you use pred topically if there is an infection? Being our resident bottom expert I though you may know. :)
 
Hmm. I'm not sure about that.
Usually Pred and infections do not go together.
But now that you have mentioned Pred ointment - I had no idea it existed - I'm going to ask about it for my fissure!!
I would definitely speak to the GI before applying it. It might also impact surgery recovery times.

And I am laughing at being a bottom expert! Lol :)
I can't even manage a fissure properly! Lol
 

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