Need to talk(Ostomy advice)

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Jeff, I can't believe this is still going on. I hope things are starting to turn for ya man. You didn't go and eat a dozen doughnuts did you?
 
Jeff- I have had a lot of problems and complications after my surgery including a few blocks and trouble because of stool still in my colon. Still, in between these bad bouts, I feel better than i have for years. I was in the hospital last week, but this week I feel like a million bucks. I believe that relief will come for both of us because of this surgery, once we get all of the bugs worked out. Here's hoping that you are feeling well soon and loving life again soon.

Dan- thanks for the article! I think maybe I am eating too much fiber mixed with binding foods since I am not breaking any of the other rules. I appreciate you looking out for us!
 
Jeff- I also wanted to tell you that now that my body is able to absorb nutrients better than it could before the surgery, I have been putting on weight and muscle like crazy. I don't know if you have a problem keeping weight on, but in case you do, thought this might make you feel better. :)
 
@Nicole....don' t even mention weight gain!! OMG....I'm verging on fat here!!! The weird thing is that Oscar is getting rather robust as well....it's kind of weird; he seems to be protruding much more than after I first had surgery. Anyone else on here find that happening? It's kind of disheartening quite frankly. I feel great, but look horrible (compared to my pre-Oscar body). I'm going to ask my GI when I go in for my colonoscopy in July if this is normal or not. Seems all my fat is going right to Oscar. It's very obvious now that he's there. When I first started with him I could wear pretty much anything...now, I have to cover him up with very big t-shirts to hide him. Damn.....

Sorry to hijack your thread Jeff...still wishing you well :)
 
I guess I should have mentioned in my previous post that I have no disillusions about my body...I know that I'll never wear a bikini again, or wear those sexy low rise jeans and a tiny tee (hey, I'm 40, I know that that's not appropriate anymore). But geez....I don't like the nasty bumpiness of my body these days....*grumbles*
 
jeff, i hope bob and reni dont mate!!! there would be loads of misbehaving stoma all over the place!!

it took me 3 months to get back to normal after i had my fred. just be patient jeff, your body has gone through a lot and is coming to terms with it.
 
Hi Jeff,

Just stopping by with healing ((((((thoughts)))))) and ((((((hugs)))))).

Take care mate,
Dusty
 
Hi Jeff,
I'm sorry about all your recent troubles. I hope things improve very soon. I was lucky in one regard, I had no trouble with the ostomy. Just my butt incision was killing me.

Now I'm eating just about anything I want. Here I am at work with grapes, blueberries, strawberries, and a banana. For lunch I can have a huge turkey sandwich with tomatoes and onions - and potato chips. I do try and remember to chew very well. After all this fruit, my ouput is thick like toothpaste. (gee, that sounds gross)

While I was recovering, I only had a taste for junk food, cakes, chocolate, etc. I put back on 10 to 15 lbs already, and I'm still about 5lbs under my normal weight. But, my tastes changed back to normal, hence the fruit.

I write this to hopfully give you hope that this will soon pass and you'll be back to a normal diet!

Best wishes,
Joe
 
Thanks so much everyone for the support you guys don't know how much it means to me. I actually slept last night which was awesome! I'm still really tired though as the night before I only slept an hour at most the night before. I've had much output for once and as long as I can keep having this output I'll be so happy. I'm still having cramps but they go away quickly and without too much pain. I have a ton of walking to do now so I'll see you guys later. Thanks everyone
 
Ha ha Cindy! I know just what you mean! I am trying to see the weight gain as a good thing, but it is coming on way way too fast! I have to completely re-learn how to eat now that my body is absorbing it. Overnight (I kid you not) I grew out of all of my skinny jeans. I just have to remember how bad I felt when I lost all of the weight in the first place, before I got used to liking being skinny. Remember that curves are good and don’t be so hard on yourself! I saw your swimsuit picture! You have a great body! It is mentally hard to get used to I’ll admit though.

My stoma has grown too. It got really big before I went into the hospital. I had to re-adjust the sizing on my bags. I was shocked too, but I guess that is all just part of it.

Glad to hear you are doing a bit better Jeff.
 
Thanks Nicole. I forgot to add earlier that I hope you start getting better soon and I'm praying for you.

I forgot to add that when I saw my GI I was told that in 3 months they may take me off of my Cimzia or my 6mp on a trial basis to see if I can get by with only one medicine. I was pretty excited to hear that. On the other hand I was very disappointed with my surgeons bedside manner. It seems like he dismissed what I was talking about and he was completely rude to my dad. He told me my pain is in my head, well even if my pain is in my head I'm still not having output without Bob sticking out of me.
 
@jeff - dont worry about the doctor and how he feels about your pain as long as YOU feel ok that what counts. I am taking my last Cimzia this week and hope not to have to take it again. its been very good, matter of fact too good to a point that I healed so fast that it created some narrowing I never had hardley any side effects from it.
Glad to hear that most of your pain went away!

@ Jer's - its always great reading your stories.. puts things in prospective

@ cddad - Joe - you have been such a great support and kind and factual
 
Thanks Dan. For some reason tonight I've been in a bunch of pain and having cramps like crazy. I wonder if it's something I ate or if it's because of all of the walking I've done today.
 
Jeff D. said:
Thanks Dan. For some reason tonight I've been in a bunch of pain and having cramps like crazy. I wonder if it's something I ate or if it's because of all of the walking I've done today.
Click to expand...

@Jeff - walking is great but dont over do it. My surgeon told me today that he wanted me walking immediatly after the surgery. dont get down on yourself, you are doing much better and have slep better last night
 
Thanks Dan, I won't over do it.

So today has been interesting. I woke up in between 5:30 and 6 with a leak in my flange. As I went to change the flange my new buddy Bob came out. It's kind of funny, now, because once Bob was out it seemed that I just couldn't stop having output. I didn't have time to do anything without having Reni putting out and that was very annoying. I actually went through another flange that I had to take off because I leaked all over the thing. Luckily my next one went on without a problem. I had leaked so much that I ended up having to take a shower and by the time I finished my shower I had filled up my bag. I think I've emptied my bag two or three times already. I almost wonder if last night a lot of my pain may have been because of Bob being blocked up. I'm not sure what's going on. I still have some pain, especially right before I have some output but it's a little better than yesterday.
 
I find that if I'm a bit backed up, or have gas, I feel pain behind my stoma. I can almost feel things moving around in there! It's the weirdest thing! Glad you're having output again though....hopefully you're all clear and things will settle down now.

As a note here as well...if you don't have alot of output after this episode don't freak out. I find that if I have a heavy output day, the next day will be almost nothing. Seems to go in waves for me.

Bye bye Bob!! lol
 
Thanks Cindy, yeah that's kind of how it is for me except I'll have a day of D and then I will have two to four days of pain and then D again. I have a CT scan tomorrow and I pray it shows no blockage. I've been moving a lot more now so things seem to be finally moving, we'll see how things continue.
 
@Jeff Good luck with the CT tomorrow. I hope these troubles are behind you.
Did you walk today? and did you eat and dring enough?
 
Thanks guys.

Dan, I'm about to go for a walk in a few moments. I have just begun my day as I just woke up at 1.lol I've just kept my fluids up as much as I can drink and I've been eating.
 
Had the CT scan this morning and it went well. They said they had some good pictures and that I should have my results from the doctor tomorrow.

I received my ostomyshop wrap just a few minutes ago and I'm giving it a go right now. It seems pretty comfortable but I need to mess with it a little more to get my bag in the pocket a little better. I had to get the X small but hopefully I'll be outgrowing this soon.haha I like the flexibility and I think after a few days I won't even feel it on me.
 
Hey Jeff,

Good to hear the scan went well. I hope the results yield positive news but if there is something at least there'll be no more wondering why. My thoughts are with you and keep us posted.

Sending you ((((((BIG HUGS))))))
Dusty
 
@Jeff - Glad to hear that the CT went well and it sounds like you are feeling better which is great!!!
Let us know how the wrap works for you
 
Hey guys, I'm feeling better today. I haven't had much pain at all. I do have a bit of a question although I think it was answered before. Yesterday, I had to constantly empty my bag, today I have hardly had any output but a little liquid. I'm farting a lot though. I'm worried a little about having another obstruction but I feel so good today that has to be impossible. I can also press all over my stomach. I have had three donuts today and a quesadilla(home made and not too spicy). The donuts are something new I added but I hadn't had any pain with them going down.

Anyways, I think this may just be a fluke day with either the pain or the the lack of output, I may have a fun night tonight,haha. Thanks guys
 
I talked about this earlier...don't worry! I find that if I have a lot of output one day, I'll have hardly anything the next. As long as you're passing gas, you're fine :)
 
jeff its great to hear that you are feeling Better today and have not had much pain. You are on your way up and it would be great if you had some fun tonight... haha
 
Uh oh, a little while ago i started to have pain again. I hope this doesn't last too long.ugh

Update: I had to take two perc's due to the pain. It's been almost two days, or maybe it has been two days since I've last had to take them. This has been the longest time it's been without. I just want to sleep.
 
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It's okay at the moment but I still haven't slept more than an hour at this point. I feel the pain meds working right now but I still have occasional pains. I wasn't able to walk much yesterday so today I'm going to go to the mall or something with my mom and walk around a lot to hopefully get all of this out of me. It's like yesterday my intestines must have been emptied and over the course of the day things started to make it to the bad area of my stomach that's still a bit inflammed so i now have pain.
 
I'm not sure when I get them back. They were supposed to be in yesterday so I'm going to email them and see what they say. If they don't get back to me on Monday sometime then I'll call them.
 
Ugh, the waiting is a pain in itself!

I know you will keep us posted. Keeping my fingers and toes crossed for you!

Take care of yourself Jeff (((BIG HUGS)))
Dusty
 
Here's a poop question for ya'll? First, it seems like most of the day I won't have any output and then all of a sudden I'll have part, most, or all of my bag full in just a few short minutes. It's very unpredictable. Will it get to a point where it just oozes most of the day instead of at random times. I don't want to have to bring tp with me when I'm in hill country on my bike or in the middle of doing a trick or something when I can do such a thing.

Second, In my stool I have been having these hard black flakes that just seems very sticky. They stick to the side of my bag and don't ever seem to want to leave the bag. Have those of ya'll with blockages had this before?

Thanks guys
 
Why do I get the strangest pains? Early today I had a horrible stabbing like pain in my lower left abdominal area where I had to actually poo out my butt and I had a little bit of red blood. Then I was fine but had to go again out my butt and after I had the horrible pain yet again. Tonight as I wanted to get to sleep my back seized up and is still extremely tight and it hurts to the touch especially in the middle of my back. I had to take 2 percocets and now I'm kind of out of it but hopefully making coherent sentences. Thanks for the support, this question really doesn't need an answer but I do need answers to my questions in my last post. Thanks guys
 
Second, In my stool I have been having these hard black flakes that just seems very sticky. They stick to the side of my bag and don't ever seem to want to leave the bag. Have those of ya'll with blockages had this before?
Click to expand...

I'll hazard a guess, ??? old blood from your operation or from having the catheter in ???
 
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aw Jeff, i can't believe you're still having all these ups and downs :(

i can only hazard a guess at the black flakes, either it's something you're eating (are you on iron supplements or eating things with raisins in, or plum skins - anything like that?), or as DustyKat says, maybe it could be blood.. i haven't had anything like that which i can't immediately connect with something i've eaten.

my advice is stay on easily soluble foods, and make sure you tell a doctor about these black bits.. might be an idea to keep a sample of them to get tested.
 
jeff its not poo from your bottom. its mucus, your body still makes the stuff even though we dont need it now. i "push" the mucus out, it sort of feels like having a mini poo. if you dont clear out the mucus regular it will just sit there and build up, until your forced to evacuate it. maybe this is what has happened to you.
 
So, today I've actually had a pretty good day. I felt good for the most part with just a few annoyance pains so I'll definitely take that as a good day.
My CT scan came back normal.
The black flakes they said is likely residue from my past obstruction.

Sharon: It was actual formed stool. I apparently still haven't gotten it all out yet. i've had some mucus as well but this was solid stool.

Dan: They told me to eat whatever I want as long as it doesn't have too much fiber so that's what I've been doing. I have been eating whatever I can that doesn't have much fiber.

Thanks for all of the support guys
 
glad the CT result was good :)

i hope you've turned the corner now Jeff, and can start to get your life back on track!
 
If anyone deserves relief is you Jeff! Enough is enough eh? Dont worry this will be but a blurb in the future, takes time, fingers crossed for ya!
 
Glad the CT results were good and I hope it helps with putting your mind at ease and you get some sleep, gain your weight back and get your life back.
.
 
So a few things happened today:

First: Today has been my first pain-free day since before surgery. Huge improvement.haha

Second: I talked to a nutritionist today and she asked if I was drinking boost or ensure. I told her I can't get boost down at all and ensure is close to me not being able to get it down. She told me about Carnation instant breakfast and so I had my mom get me some...Wow is all I can say. I don't have a problem with milk so I put it in a blender with 8 ounces of milk and two scoops of chocolate ice cream and man that was a great shake. She wants me to drink those twice a day. I can certainly see myself drinking this stuff. Woohoo, I've finally found a weight gain drink I like and maybe in a few days I can say I love it but I want to say I like it until I really see what it's like. I cheated the recipe and added less CIB than I was supposed to.haha

Thanks guys for all the support and I'll keep the daily updates coming.

Jeff
 
what is carnation instant breakfast? is it condensed milk? if so i love that stuff but couldnt drink it too much as i would be ill. glad you have turned the corner though.
 
I'm not sure and I don't really want to know as my mind plays tricks on me. I bought the chocolate version and it smells like chocolate powder. I just know one of my shakes has 450 calories in it, so two a day and that's a guaranteed 900 calories. That's more than I've been having in several days.haha
 
Jeff, I've been praying about your pain and am so glad for you that today was a GOOD DAY. Sometimes good moments are all we can ask for, but it's so much better to think about having entire good days.

The ice cream / CIB shake sounds delish.
 
i googled carnation breakfast stuff. and its a milk drink like ensure or build up. as long as it works for you, then great.
 
Jeff, the Carn. Inst. brkfst is one of the recommendations we got for EJ. He loves 'em too. We use them with vanilla ice cream for milkshakes too. There is a reduced sugar version that we use most of the time but he has had no ill effects from the regular version either. Glad you found something that seems to be working for you and hope you continue pain free.
 
Jeff, sorry for you pain, sucks have been there. Prior to my last surgery I was having pain all the time in my belly. Most of my pain was under my breast bone, lower back and sciatic nerve. The CT showed nothing for many of them. Then they did some new MRI to see how bad and where my crohns was, and they found that my j pouch connected itself to my spine, so that is different from you.

Do they think it can be scar tissue building up?

I know the only pain medication that worked for me was dilaudid, BUT that comes with caution. Normally it backs alot of people up and had a HIGH ADDICATION to them, but it was the only medication that worked for me. Since the surgery I have cut back and currently not on them, FINALLY

Wish you the best, let us know what we can do to help
 
I'm so angry right now! I've had two leaks in one night. The first one wasn't very major and I probably could have gotten away with it but I didn't want to leave anything to chance so I changed appliances. A few hours later and and hour of sleep and I wake up to my flange being saturated. What's going on? I've realized my stoma before it puts anything out shrinks up and goes into my stomach. What am I supposed to do with that? I can't seem to figure out how to keep a freaking pouch from leaking and I'm getting a bit saddened and upset. I'm wondering if it's Hollister that's the problem for me. What exactly are the convex flanges, would they help?
 
Hey Jeff,
Glad you're feeling better - except for these leaks. Did you ever visit a stoma nurse? It made a difference for me. He or she will give you samples of the convex, if that is what you need. And hopefully figure out the problem.

Plus, you're only 4 or 5 weeks out. I'm 11 weeks out and finally feel like I have a good handle on things. It definately takes some time to try different things and find what works for you. But you will!
 
jeff i still get very occasionaly night time leaks and ive had my stoma since 2003. make sure the area is clean and dry, the flange wont stick it the area is damp. put bed pads on the bed. if you dont have bed pads, use a soft towel. so when/if your stoma does leak then you can get back to sleep quicker. just chuck all the "dirties" in the wash/bin.


my last daytime leak was at my sisters wedding! it was a good excuse to get away as well. i cant stand all the falseness that goes with a wedding, but thats another story
 
I used convatec with the paste and works well, if u call them they will send u tons of free samples, I cut the wafer they use paste around the hole. I use a belt they sell to make sure I get good adhesion of the paste and the wafer. I use the auto lock version, which works very well.

Their number for convatec is 1-800-422-8811
 
Thanks guys for all the help. I'm waiting for the ostomy nurse to call me or email me back what I could be doing. I'm using a coloplast one piece because I'm sick of wasting my Hollister that i payed for. I think I hate this coloplast though. I cut it to perfect size and it fit perfectly when I initially had it on. After a little bit though it came unsealed and is now even with the top of my stoma and it flaps a little bit. I just don't get it. This is so annoying!
 
Oh boy, so not only has this day been bad because of the frequent leakages but I've also had D today. I also don't really have much of an appetite. How did I go from feeling so great to feeling so bad. I'm sore all over as well. I'm cramping up like crazy. When will this saga end?
 
i wish i could help on the pain issues, Jeff - but i can't even begin to guess what's causing it... just go easy on food, keep to soft stuff - that's the best advice i can give you, and make sure your consultant knows you're suffering still....

on the stoma issue, i can probably be of a bit more help. my stoma started doing the same aerobic tricks yours is doing, retracting then when it came back out, it was bent over, so the output went under the flange, resulting in very sore skin...

after a long time suffering, & trying to make do myself, i have recently been trying lots of different appliances, and the convex ones really do work for this kind of problem. they have a bowl-shaped flange, rather than flat, and the stoma sits in the base of the bowl - this keeps the stoma in the right place and at the correct angle. it's really made a difference to me - not had one leak since, nor a retraction.
 
Thanks Sue. I hope they send me a few convex flanges to see if they will work for me. One thing though is that my stomach is very flat so I don't know how the convex flange will fit on me.
 
I do shave the area, but every other time. Less pain to remove it. Some people also suggested laser to remove the hair, I might be checking into that. Since mine is permanent might be better in the long run.
 
I shave everywhere but directly next to the stoma. I have a few hairs left there because I just can't get those cut and I still have a tender spot. Trust me, it hurts much less when the hairs are shaven then when they are there. I was able to get 6 days once out of a flange and I didn't shave that time because it wasn't my every other time shave and it hurt like heck to take off the flange. Now I pretty much give a quick pass over every time and it makes it much less painful.
 
You ladies have it lucky in the tummy hair department. I shave at every wafer change. I do it in the shower right after removing the wafer. I soap up and shave away. I get as close as I can to my ostomy. Just takes a few minutes.

After about 3 days, I can see the hairs starting to grow back right through the Hollister fabric.
 
No, they took care of that after I was out. Besides my tummy, they shaved a large area on each thigh. Not sure what that was for? Maybe some monitoring equipment.
 
I had marks on my thigh from where they taped the catheter...not sure if that's why they would have shaved you Joe?
 
I have a 101.6 fever so I'm praying I don't have some sort of infection. Oh boy, that would not be good right now. I have too much needed to do.
 
have you taken anything to get the temp down?
a blood test will show up an infection though
 
thinking of you Jeff

hi jeff,

I'm from the CAF board. You introduced me to here. Thanks. How are you doing my friend. Hope you are doing better and back to you smiling self.

Hang in there. There is a light at the end of the tunnel. If I can get through many obstructions, surgeries, a stroke, DVTS, bad hair days, and infections, so can you. God Bless you my fellow crohnie.
 
Thanks, I've been doing awesome the past week. I'm actually on vacation right now in New Orleans and things have been going really well. Thanks for thinking of me. I can't believe you've been through so much. I'm praying for you my friend. Thanks for joining us on here.
 
N'oleans, well you said bring on the spice!! Enjoying some good cajun cookn Jeff? It's encouraging to see your first sentence. Are you sleeping any better? I guess not since it's 4:30 am there.
 
Haha, I haven't had anything real spicy but I just got here. More like a snowball weekend.haha I still can't sleep. Today it's just weird because I didn't have much output at all during the day from 12 until about 2ish. At that point I realized I needed to change my appliance so I did and after I have just had the output from today come out so I haven't been able to sleep. I'm also having trouble sleeping because there is no TV in the room I'm in. I need to have a TV going and even though I have my music playing it's just not the same and I'm not able to get comfortable. I can't see what tomorrow has in store for me as I'm not sure what we're doing but I do know I'm getting pretty darn hungry and I don't feel comfortable walking around my uncle's house and searching for food, so I guess I must wait until breakfast.
 
jeff when my stoma was new, and i didnt realise when "fred" was gonna get active, and would often change him as he got active!!! not a good idea lol.
 
Haha Sharon, I learned that one the hard way as well. I had to change the appliance though so I just did enough to get it on as quick as possible. If I didn't I knew I would have a mess on my hands because I could see my skin on my stomach.
 
I wanted to update that I'm doing great right now. I went to New Orleans this weekend and had more than I should have to eat and I felt fine although I did have a little annoying symptom in that I had almost constant output all day on Saturday.haha I had no pain but Reni sure did sputter the stuff out all day. Thanks guys for all of the help and support you all of have given me.
 
That's fantastic Jeff!! Glad your vacation went well and that Reni is doing his thing!! :)
 
So tomorrow I do my prep for Wednesday's sigmoidoscopy and ileoscopy. I also have an appointment in the afternoon with the same doctor so hopefully if everything looks good maybe I can stop my Cimzia treatments. That is what I'm most hopeful of.
 
Thanks, actually I forgot that my prep is awesome. I just have to drink liquids. There is definitely a good side to an ileostomy besides feeling better.haha
 
Hey Jeff,

Sending lots of luck your way for tomorrow!!!

:goodluck::goodluck::goodluck::goodluck:

Take care,
Dusty
 
@ jeff - I hope your procedure today went well and you can get off Cimzia. Keep us posted. sending you positive thoughts
 
Okay so I can finally post after today.haha I got some good news and I got some bad news today. The good news is that my colon is looking great. He said it's slightly inflamed and that is caused by a lack of nutrition which I knew would happen and that's perfectly normal. My butt has healed up as well and everything is really looking great down there.

The bad news is that I have an ulcer and a granuloma a little past the stoma entrance, or exit you may say. He said this really isn't all that uncommon, especially with the problems of blockage I had. He is going to keep my on Cimzia and boost me up for the next three shots and then go down. Then I'm going on Entocort for two months and then he'll check me out and see what happens. He actually thought it may be healing on it's own and he's not sure yet the cause but he took a biopsy and he'll give me the results at a later date.

Thanks guys, he says really I'm looking good. Both the ulcer and the granuloma aren't large at all and the granuloma has most likely lost it's shape because it's not circular but rather it's got a lot of the inside breaking down and it's kind of splotchy so he feels that it's not much to worry about at all. He just wants to heal it faster and make sure it goes away quickly.
 
Oh wow Jeff that's great! Even the bad news isn't so bad, YAY! I'm so happy for you that things are finally settling down. :) :) :)
 
Thank you! It's kind of funny because I'm barely doing anything the doctor wants me to do.haha He wants me to eat low residue yet the things that are going down the best are pizza, spicy fried chicken, and other spicy foods. I'm drinking while I'm eating although he wants me to drink only 30 minutes after which would be impossible to ever get anything to drink because I'm almost constantly eating something. I can't wait until he says I can eat whatever I want.
 
Jeff D. said:
Thank you! It's kind of funny because I'm barely doing anything the doctor wants me to do.haha He wants me to eat low residue yet the things that are going down the best are pizza, spicy fried chicken, and other spicy foods. I'm drinking while I'm eating although he wants me to drink only 30 minutes after which would be impossible to ever get anything to drink because I'm almost constantly eating something. I can't wait until he says I can eat whatever I want.
Click to expand...

What's left to eat when he does give you the all clear! or is it that you won't feel guilty? :ybiggrin:

Seriously though Jeff, I hope you get the all clear with your diet ASAP.
 
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Congrats man, hopefully the time between now and your reconnection will fly by. I know the months between my resection and reconnection felt like forever, just stay busy with little projects. That's what I did.
 
hahaha Kelly, that cracked me up.lol

self-enthusiast-I wish I could get this reversed some time soon but it looks like I'll have my little buddy for at least several years.

Thanks everyone for the support.
 
@ Jeff - Glad things went well. From your post I got a sense that mostly things went ok. I am happy that your colon and narrowing are healing up.
You are so funny the way you describe your choice Glad the cimzia is working for you.
 

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