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01-22-2016, 07:45 AM   #1
chemri
 
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Nervous about surgery

Hi everyone,

I've just joined this site as I need to talk this through with someone and doctors are hard to see and I know no one else who can really talk this through with me. Whenever I look online at how it will be I see what I imagine to be worst case scenarios and it's making me nervous.

I was diagnosed with Crohn's in Nov 2015 after having terrible pain, depression and fatigue for years and ignoring it, thinking it was normal(?). Well when I was diagnosed I got put on Prednisone and WOW I FELT AMAZING. I had not felt that good in years. Truly. But the time came to start lowering my dose and sadly the pain came back. I got an MRI which showed that I needed a laparoscopic ileocolic resection due to complex stricture and a fistula had formed. So I booked it for mid Feb thinking YES! FINALLY!! The doc was saying how great people feel after it's done, etc.

So, as I mentioned before now the time is approaching I am looking into recovery time and such and people are sharing no good stories. I start back at uni 10 days after surgery and I don't know if I should be planning to miss those classes. I guess I really want to know the following:

Best case scenario-what is the recovery time? Or perhaps the stages of recovery? When can you stop on bed rest? When can you drive your self around? When can you return to work and study? When can you get back to sport?

I feel like I have so many responsibilities for after my surgery, I don't want to fall behind as soon as uni starts, and I don't want to lose my job if I miss too much work!!

I feel worried about how long recovery will take and when I worry about that I worry about what will happen during the surgery! What if it goes badly! What if they find out it is worse than they thought when they open me up! What if all that extends my recovery time!

As you can see, anxious is a good icon to be using for this. I just need some people talking to me, I can't keep reading other people's threads they have created anyway you get the point.

To give you some background about me I am a 21yo otherwise healthy female from New Zealand.
01-22-2016, 10:57 AM   #2
Eridon2002
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Hi Chemri, welcome to the forum! I am in a place just like you. I have been told I need a resection of my splenic flexure and part of the descending colon due to severe strictures. Most people with Crohn's have ileocolic resections so my surgery will be different than what most experience. I have to have 2 surgeries. First to remove part of the colon and create a temporary ileostomy. Second one will be the reversal. I don't have any disease in my ileium and fear cutting there will create an anastomasis site that could stricture and cause problems in the future. I know that they will want me out of bed and walking the second day after surgery. I will be able to drive possibly the second week after surgery if I am on no pain meds. I won't be able to lift more than 10 pounds for weeks. I have to option to work from home for a few weeks which will make it easier. As for returning to sports-I think it depends on what sport. I rock climb and it will be a while before I'll be able to do that
01-22-2016, 11:36 AM   #3
Clairegard1979
 
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Hey,
I had an illecocal resection 10 weeks ago. I'm afraid the recovery is long! You will feel tired for a long time and feel like you have no energy. I had pain from the wound for about two weeks. I still get the odd twinge now, not bad tho. Also you will get a lot of wind pain so definitely walk as much and quickly as possible to help with this. I was allowed to drive after 4 weeks, it depends when your wound is comfortable enough to not hurt if you have to stop suddenly. I had 7 weeks off work but I felt as though I could have gone back after about 5 weeks. I am still doing part time hours as still find I get tired. Also your bowels will be all over the place while you recover. I have been told this can take 6-12 months to settle back down (I think this is worst case scenario) I have recently started taking medication for to help with this.
Sorry it all doesn't sound good but I would rather have known before my op so I was prepared! Like you I have been told the improvement of life outweighs the pain surgery and recovery so I'm hoping this is the case!
Good luck x
01-22-2016, 11:37 AM   #4
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Oh and you aren't allowed to exercise or heavy lifting until your post op check up, usually about six weeks after
01-22-2016, 11:57 AM   #5
Absentminded
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Hi, it's great that you've found the forum, there's lots of info and support here!
Sorry that you're having to have surgery. I've had five altogether, one laparoscopic, two laparotomies (open surgeries) and two other ones, so am relatively experienced now.

For the two open surgeries I was in hospital for between 5 and 7 days. It was sore, but not unbearable plus you will get pain relief, they aim to keep you as comfortable as possible.
My first op I had two months off work to recover (I was also getting used to having a Stoma which is why I had so long off), and my second I went back after 6 weeks (I was on my feet most of the day at work, walking around and talking to people so it was hard going back, but my surgeon was happy with my recovery.)

After your op it is really really important to get out of bed, move about as much as you can and sit in the chair next to your bed. I didn't after my first one and it really affected my recovery. After my second I made sure I walked about the ward as much as possible (it felt like the hardest thing ever to begin with, but made such a difference.)

Focus on the end result and how much better you will feel once it's done. That thought kept me going! I don't regret any of my surgeries, they've given me my life back. I personally don't have any fear of having surgery anymore either, I wouldn't be bothered if I had to have another, I know I can cope with the pain and the benefits far outweigh the short term discomfort.

I know I haven't written about laparoscopic surgery, but thought it might calm any worries you get have to know about an experience of open surgery.
I hope it all goes well and you're fighting fit in no time!


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Lucinda x

Diagnosed: July 2009

Resection and removal of Enterocutaneous Fistula: Jan 2014
Pelvic infection Drainage: April 2013
Ileostomy reversal: February 2013
Ileocecal resection and temp. ileostomy (Say hello to Norman!): Nov 2012
Current Medication: NONE!

Past medications: Humira, Infliximab, Azapthioprine, Asacol, Budesonide, Prednisolone, Flagyl, Cipro, Cholestyramine (Questran), Fortisips.
01-22-2016, 02:51 PM   #6
fuzzy butterfly
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Hi I had 2 ops in 12mths one for an ileostomy n one to reverse it. I was really really poorly first time so I was of work for 3mths after. I had such severe pain before that op. I have had no pain since . I was off for 2mths with the reversal. I was up out of bed a couple of days later with 1st n next day with 2nd. Walking around really does help. Even if it tires you n hurts a little.
Best wishes, take care n try not to worry.. ☺💖
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5yrs since dxd. 3yrs in remission.. in remission since march 2014, dxd july 2012, ileostomy march2014, reversed feb 2015 all's good so far
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01-22-2016, 06:32 PM   #7
Eridon2002
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Thank you all for sharing your stories. It's just scary because everyone's experience is different. You never know if you are going to be lucky or unlucky. I'm getting a second opinion at Mayo clinic. I know I have to have a resection; but I want to know if Mayo has a better technique than the colo-rectal surgeon in St. Louis. I just want to make sure I research what will be my best options. I also have no clue how much time to take off. I have 4 weeks vacation and I can split that up and use it for the surgery/hospital time and a week after. My boss has been very understanding and will let me work from home a few weeks(I'm a technical sales specialist so don't have an office to go to). However, if there are complications I'm afraid I'll have to take short term disability which is only 70% of my pay
Another question I had-did you need help at home that first week after the hospital? I live alone so trying to prepare in advance.
01-22-2016, 07:23 PM   #8
Clairegard1979
 
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You may need a little help for the first week or so being at home, just with chores, cooking etc as you won't feel like doing much at all. Also some help getting out of chairs & bed makes it slightly easier
01-22-2016, 08:05 PM   #9
matt82
 
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Thank you all for sharing your stories. It's just scary because everyone's experience is different. You never know if you are going to be lucky or unlucky. I'm getting a second opinion at Mayo clinic. I know I have to have a resection; but I want to know if Mayo has a better technique than the colo-rectal surgeon in St. Louis. I just want to make sure I research what will be my best options. I also have no clue how much time to take off. I have 4 weeks vacation and I can split that up and use it for the surgery/hospital time and a week after. My boss has been very understanding and will let me work from home a few weeks(I'm a technical sales specialist so don't have an office to go to). However, if there are complications I'm afraid I'll have to take short term disability which is only 70% of my pay
Another question I had-did you need help at home that first week after the hospital? I live alone so trying to prepare in advance.
I would maybe get a second opinion. My crohn's is in the same part that yours is and has a little bit of inflammation in the starting part of the colon. I too have a fistula. I've had problems every 5 to 6 years it seems to flare up. I even had a 14 cm abscess about ten years ago where the intestine was all matted up in. And I was in hospital for two week and I remember they were about to due surgery but my gi at the time put me on iv antibiotics and Iv steroids and it fixed the problem. Now I have had a couple times where it would flare and I always caught it in time and would go on the iv meds for a week as an out patient and I would be good to go in about 2 weeks. But this past year I noticed some pain in my right lower. And just figured it was just so normal crohns pain that I've gotten use to after 17 years. And I found out this October that I should have went in for a check up way before. I ended up with a large abdominal wall abscess that I had to have drained. And when they drained it. 4 days later food that I would eat came out. So it was a fistula. I have surgery as an option but there is also humira, and other drugs that can be used if my infection ever gets under control. My surgeon who in London hospital in Ontario is one of the best and only deals with Crohn's and gastrointestinal surgery still wants to try everything before surgery. I've always been told for 17 years to keep surgery as last ditch effor to fix. But I also know I'm really sick of having stuff come out where it's not suppose to. And especially with news of this anti-map vaccine and Amat treatment with antibiotics. Sorry about the rambling story. Just wanted to let you know there is options. If you have a GI ask questions and tell them what you want done. Surgeons sometimes only want to cut, when GI and ID doctors want to use the medical end of it first.
01-22-2016, 08:07 PM   #10
matt82
 
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And if you need help at home. I know here in Canada they set up home care or von nurses that come in. I have them come to check my fistula and bring supplies. And they can also administer iv drugs if you would need
01-22-2016, 08:48 PM   #11
Eridon2002
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Thanks Matt, I was hospitalized in April because of an obstruction. I was put on IV steroids and it took 4 days to clear. Horribly painful and scared I was going to have to have a surgery. I was out of town at the time for work so my family was a 9 hour drive away. Since I travel a lot for work this could easily happen again but I could be in the Lincoln NE or Ames Iowa where the my surgical outcome if I have to have emergency surgery might not be as good. Luckily when I had the obstruction on April I was in Rochester MN and went to Mayo. They were very conservative and wanted to see if I could clear the blockage myself before digging in with a scalpel. Sometime you just don't know what the right choice will be. There is nothing clear cut in this disease(other than it sucks). I think I will get 2 home health care nurse visits after surgery and luckily my Dad is retired and can stay and help me post op.
01-22-2016, 11:46 PM   #12
ronroush7
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I had a resection six years ago . The day after the surgery , they tried to get me up and walking. It took me another day before I was walking. I walked at least twice a day after that. Two and a half weeks after the surgery, they released me. That was on April 22nd. It was July before I could go back to work.. It took me a while before I could get back to normal activity
01-24-2016, 06:55 AM   #13
chemri
 
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Hey,
I had an illecocal resection 10 weeks ago. I'm afraid the recovery is long! You will feel tired for a long time and feel like you have no energy. I had pain from the wound for about two weeks. I still get the odd twinge now, not bad tho. Also you will get a lot of wind pain so definitely walk as much and quickly as possible to help with this. I was allowed to drive after 4 weeks, it depends when your wound is comfortable enough to not hurt if you have to stop suddenly. I had 7 weeks off work but I felt as though I could have gone back after about 5 weeks. I am still doing part time hours as still find I get tired. Also your bowels will be all over the place while you recover. I have been told this can take 6-12 months to settle back down (I think this is worst case scenario) I have recently started taking medication for to help with this.
Sorry it all doesn't sound good but I would rather have known before my op so I was prepared! Like you I have been told the improvement of life outweighs the pain surgery and recovery so I'm hoping this is the case!
Good luck x
Thanks for the reply Clairegard, I've definitely been hearing a lot about walking asap after surgery so I will definitely do that. As for the tiredness-that sucks as I start uni 10 days after the surgery and don't know how much I will have to miss and if I'll fall behind. I've told my bosses I can return to work after 2 weeks.. It's only 3 hours at a time and not that strenuous but am I being too optimistic?! I have always liked and believed in being optimistic but obviously there's a point where you have to be realistic. What do you mean about bowels being all over the place? Is it in a similar way to how the crohns was making it anyway? Thanks for your reply
01-24-2016, 06:59 AM   #14
chemri
 
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I had a resection six years ago . The day after the surgery , they tried to get me up and walking. It took me another day before I was walking. I walked at least twice a day after that. Two and a half weeks after the surgery, they released me. That was on April 22nd. It was July before I could go back to work.. It took me a while before I could get back to normal activity
Thanks for the reply. How come it took so long for you to get released? My surgeon said it would be 3-7 days in hospital? What was keeping you from work exactly? (ie pain/bowel movements/fatigue?)
01-24-2016, 08:05 AM   #15
DEmberton
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I had the same surgery. I had 5 days in hospital - went in Monday morning, left Friday evening. I spent the next week lazing around at home; went for a few walks but you don't realise just how weak and tired you are until you do. Then the following week I started doing some work at home, dared to drive my car, and decided I'd had enough and went back to work on the Thursday (so 2 1/2 weeks after surgery). I was still a bit sluggish moving around, and would get the odd stab of pain, but mostly it was okay. But then I was only sitting in front of a computer; I couldn't have done it if I'd needed to be on my feet all day.

I live on my own, but supermarkets deliver here now, so that wasn't a big issue. Make sure you buy food beforehand so you have something to eat when you get out of hospital.

I found I was still in quite a bit of pain that first weekend at home, but then it eased, and by the Wednesday I was down to just taking a couple of paracetomol in the morning and not needing anything else. The bowels did take about 2 weeks to return to any kind of normality, plus with the air they put into you you'll look pregnant for that long. 6 weeks after surgery I was feeling great, gaining the weight back rapidly, and started going cycling again. That was a good time.
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01-24-2016, 08:46 AM   #16
ronroush7
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At the end of March, I went to ER with a case of pancreatitis. I had an allergic reaction to something In the TPN tbey had me on. I am not sure how but I think that factored into the timing somehow . Also after the surgery it took a while before my first bowel movement.

01-24-2016, 12:56 PM   #17
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Thanks for the reply Clairegard, I've definitely been hearing a lot about walking asap after surgery so I will definitely do that. As for the tiredness-that sucks as I start uni 10 days after the surgery and don't know how much I will have to miss and if I'll fall behind. I've told my bosses I can return to work after 2 weeks.. It's only 3 hours at a time and not that strenuous but am I being too optimistic?! I have always liked and believed in being optimistic but obviously there's a point where you have to be realistic. What do you mean about bowels being all over the place? Is it in a similar way to how the crohns was making it anyway? Thanks for your reply
Two weeks may be a bit optimistic but if you are doing short hours it may be achievable, just see how it goes and don't put too much pressure on yourself! I was expecting to feel great really quickly and started to get quite downhearted when that didn't happen. Plus you may be in hospital for a good while, I was in for 5 days from op then back in for 2 days 2 weeks after op due to a fluid build up.
About the bowels, yeah expect diarrhea/constipation and it can change on a daily basis. Although again I think this can be different for different people, seems to take the bowel a long time to recover from being messed about with, it's a major operation.
01-24-2016, 01:45 PM   #18
ronroush7
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Two weeks may be a bit optimistic but if you are doing short hours it may be achievable, just see how it goes and don't put too much pressure on yourself! I was expecting to feel great really quickly and started to get quite downhearted when that didn't happen. Plus you may be in hospital for a good while, I was in for 5 days from op then back in for 2 days 2 weeks after op due to a fluid build up.
About the bowels, yeah expect diarrhea/constipation and it can change on a daily basis. Although again I think this can be different for different people, seems to take the bowel a long time to recover from being messed about with, it's a major operation.
Yes,it seems like my wife told me on more than one occasion that I didn't realize how serious an operation it was. .I think each person is different.

01-24-2016, 01:56 PM   #19
DEmberton
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Yes,it seems like my wife told me on more than one occasion that I didn't realize how serious an operation it was. .I think each person is different.
I was in complete denial. When the doctor told me I'd need surgery and that it would be laparscopic I actually thought it would mean an overnight stay only. Then I saw the surgeon and he said 5 days. I told my boss that I'd need to miss a week; I don't think she believed me and told me to take as long as I needed. When I had the pre-op assessment that's when the nurse told me I'd need 6 weeks off work and wouldn't be able to drive for a month.

Suddenly I was questioning whether I really wanted to do this thing that would have such a big impact on my life. But totally worth it.
01-24-2016, 08:56 PM   #20
Eridon2002
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I feel like the colorectal surgeon may be being too optimistic. He told me I would only have to have the ileostomy for 2 months. From what i read here the average is about 6 months before reversal. Maybe he didn't want to scare me away!
01-25-2016, 05:40 AM   #21
fuzzy butterfly
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Hi Eridon, maybe that's a point, as most people would want to have one for the shortest time possible. I personally think that if you have a reversal 2 mths later, you will have no sooner got over one surgery then you will be back at square one, with out much of a breather in between.
The only thing is that it gets it all out of the way quickly and your done. I do believe that 6mths in between is a better option as you will have had more time to recover and repair internally. Just my opinion tho, I'm not a doctor and I think the desicion is up to you and your doctor of course.. I am just going off my experience with this, my ileostmy reversal was done after 11mths, and I think it would have been ok from the 6mths mark to have had it done. It was just a case of getting the surgery date from the surgeon, n he was in no rush lol.
I would say ask as much as possible as to how you are likely to be physically after the said 2 mths and go from there.
Sending best wishes, support n hugs 💖
01-25-2016, 07:11 AM   #22
Susan2
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Hi Eridon. One thing that we can say for certain about this disease is that nothing is certain. Everybody reacts differently and other people's experiences can only be a very general guide. As you are having laproscopic surgery, your recovery time might be shorter than those who had open surgery and if you are young and otherwise fit, this might be to your advantage, too.

On that note, make sure that you are as fit and rested as you can be before the surgery - it all helps.
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Crohn's Disease - symptoms since c1955, diagnosed early 1970s. On Prednisolone until...
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01-25-2016, 07:25 AM   #23
fuzzy butterfly
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Very true Susan, I was forgetting it was laproscopic, mine was open so recovery may well be quicker. I apologize for my mistake there Eridon, best wishes 💕
01-25-2016, 08:07 AM   #24
Eridon2002
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Thanks Mandy and Susan! For me, I just want to do whatever is best for my body. I understands even if that means keeping the ileostomy bag for longer while my colon heals. I have been trying to exercise more to prepare myself for surgery. Especially lifting weights and doing abdominal exercises(I want that scalpel blade to bend when it cuts into my abs!) I've got to shake this nasal congestion that has been ongoing for 3 weeks. I don't want to go on antibiotics but I know I shouldn't go into surgery with a possible nasal infection.
01-25-2016, 09:53 AM   #25
fuzzy butterfly
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You are most welcome. Hope the nasal infection clears up quickly.. I love the scalpel bending ☺. I am sure you only want the best for your body n health, and its good that you are prepared to have the ileostomy as long as is needed. I actually got quite attached to my stoma . It was my saviour. I shed a tear when she went coz she had made my life worth living again. I say she as I called it Hetty . I gave it a name in the interest of acceptance of it. I wish you all the best, and hope that all goes smoothly for you. I💕💖
02-02-2016, 04:05 AM   #26
chemri
 
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Thanks everyone that's all great feedback. I guess ultimately (and unfortunately) I can't rely on anyone else's experience and will have to figure it out for myself.

It's a big weight off my chest now that my bosses have gotten back to me and have been completely understanding and supportive!

Surgery in under 3 weeks now.. I'm nervous but the symptoms are so bad at this point I also can't wait!
02-02-2016, 07:32 AM   #27
Eridon2002
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That's great news about your bosses being understanding. My resection will be in about 4 weeks. The past 2 days were horrible and I was scared I was getting an obstruction. I almost which I could move the surgery date up.
02-03-2016, 06:00 PM   #28
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Hi everyone. I was into see my surgeon today and was told that the fistula I have would need surgery to fix. He said even if humira or remicade were to work to close it, it would just come back since the part the fistula is coming from is so full of scare tissue and infection. I've had crohns for 17 years and never had surgery yet. I have a reconstruction on the 18th and the surgeon is going to be removing the some of the right part of my colon where the small instetine joins. He thinks that he should be able to hook it all back up in the same surgery. He also is going to clean the abscess and infection I have where the fistula exits out next to my belly button. I'm kinda worried because he said there is a chance I may require a temp bag if the ends can't be reattached and. A 7 to 10 % chance I'll have a bag for the rest of my life. I'm just wondering if anyone else has had reconstruction surgery and had good luck with it?
02-03-2016, 07:13 PM   #29
ronroush7
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Hi everyone. I was into see my surgeon today and was told that the fistula I have would need surgery to fix. He said even if humira or remicade were to work to close it, it would just come back since the part the fistula is coming from is so full of scare tissue and infection. I've had crohns for 17 years and never had surgery yet. I have a reconstruction on the 18th and the surgeon is going to be removing the some of the right part of my colon where the small instetine joins. He thinks that he should be able to hook it all back up in the same surgery. He also is going to clean the abscess and infection I have where the fistula exits out next to my belly button. I'm kinda worried because he said there is a chance I may require a temp bag if the ends can't be reattached and. A 7 to 10 % chance I'll have a bag for the rest of my life. I'm just wondering if anyone else has had reconstruction surgery and had good luck with it?
Matt , wishing you the best.

02-04-2016, 01:18 AM   #30
fuzzy butterfly
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Hi Matt you ask if anyone has had reconstruction surgery do mean that or re-section surgery ? 💕
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