Maybe I need new friends?

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Regular Member

Date Joined Feb 2006
Total Posts : 214
   Posted 6/29/2010 9:14 PM (GMT -7)   
So I'm basically the sickest I've ever been (minus fevers) even sicker than when I was diagnosed 8 years ago.
I just dont get my friends.  I sent an email out trying to explain to them the severity of it and how it's been really lonely and I would appreciate people coming over.  Some made plans to visit me and then "forgot" or never followed through.  I just don't understand that some of these friends are the same ones that visited me all the time when I was in the hospital but what, just because I'm at home and trying to stay out of the hospital this time and not as sick or as lonely? 
So I try to express my feelings.  All I said was that I was dissapointed no one has visited me and the two I confronted blew up at me.  Am I being unreasonable.
I tried going to a friend's birthday thing and people thought I was "upset" or "pissed" and not my normal smiley stuff.  I wasn't pissed, I was just in pain and nausous and trying not to throw up on anyone.  And now the friend whose birthday it was and who "forgot" about her plans to visit me today is telling me about how its hard to hang out with me because of my behavior.
...Doesnt friendship mean being friends with people when theyre up and down?  I mean I know I'm known for being like the happy, peppy, smiley, giggly one but just because I'm not 100 percent people can't visit me?  Of coure I'm a little blue, I'm in pain, can't eat, throwing up, have nadosum, throat sores, backpain, stomack pain, can barely walk since i have no nurtrients in me and ya know...i'm sick! i don't understand why people can't understand that!
I feel like i have a right to be dissapointed and express that to my friends.  its not like im super angry and upset, just a little sad noone can come and visit me. apparently with chicks you cant tell them youre dissapointed or else it sounds like youre attacking them and yadah yadah yadah.
ugh, i just needed to vent since ya know, apparently i can't to my friend!
25 year old female, diagnosed with Crohn's in 2002 after being misdiagnosed with Lyme Disease for a year.  Have been on Prednisone, Asacol, Entocort, and Remicade in the past.
Currently on 50 mg of Mercaptopurine and levothyroxine (50).  

Trying to get on Humira but having insurance issues.. :(

Veteran Member

Date Joined Mar 2006
Total Posts : 1034
   Posted 6/29/2010 9:32 PM (GMT -7)   
people are very superficial, especially at your age. i lost a lot of friends in college cos i wasnt going out all the time and drugs prevented me from drinking, which was the focus of every activity so i was never invited anywhere. they just didnt get it. it sucks. of course you are not your normal self - who is when they are sick? they dont understand that a good day means you think you are well enough to suck it up for a few hours and venture outside and try to have some fun (doesnt mean you are, but you are trying). it is hard to relax and have fun when you are always thinking and worrying about things like "where is the bathroom", "when am i going to have to", "i hope the bathroom is available when i have to go", "i hope this food/drink doesnt make me sick". they dont know what it is to have a constant stomach ache and have such a reduced quality of life and pop handfuls of pills daily. they cannot relate. it is not that they are not your friends, but as we get older, our lives diverge and we take different paths, sick or not. if you are sick, your friendship is generally the first to go as you are not actively part of their lives anymore cos you are home sick. take some solace in that throughout your life, friends will always come and go. they are like seasons. your best friend today will not be your best friend tomorrow and may be reduced to only an acquaintance.

i learned all this the hard way. in about a two year span i went through 2 surgeries, almost had a colostomy and then a revolution through diet. all this time i didnt go out or do much as i was agoraphobic but also confined to the house from either recovering from surgery or dealing with incontinence/colonic inertia and then radical diet changes that prevented me from eating out and of course lack of energy. everyone became an acquaintance at best. no one visited or called. i found out that if you are not actively social with your friends, they fade away. again it sucks. so i just do what i want when i want without them. trust me, they are now missing out. life has a lot to offer. being lonely sucks, but then life is what you make of it. it is an oyster in your hand, it is ready for you grab it and do with it what you will. all those cliches apply. if your friends seem distant, then forget them - make new ones. the end of any relationship/friendship sucks, even more so when you have a chronic disease, but there are too many good people out there waiting to meet you and be a part of your life. the hard part is finding them, but they do exist. oh, and dont despair but this will all happen to you again when all of your single friends get married. for some reason, married people cannot hang out with single people. i have lost many many friends to marriage. that sucks too.
Crazy Harry

Crohn's since 1993 (17 yrs old then)
surgery in July '05 - removal of 2 inches at ileum and 8 inches of sigmoid colon (had fistula into bladder)
Nov '05 developed colonic inertia; July '06 told i needed ostomy surgery
began maker's diet in August '06 - now feeling the best ever with no symptoms of colonic inertia and i kept my colon
med free as of 10/31/07

artist guy
Veteran Member

Date Joined Jan 2010
Total Posts : 1373
   Posted 6/29/2010 9:44 PM (GMT -7)   

harry you said it the best. my 2 cent, Sara you are to good for the H, i have a 20 year old sara,(daughter) and i told her she was to good for the h

Post Edited By Moderator (Nanners) : 6/30/2010 6:49:53 AM (GMT-6)

Veteran Member

Date Joined Apr 2006
Total Posts : 634
   Posted 6/30/2010 12:36 AM (GMT -7)   
Sara, i know just how you feel!!! I'm 24 and have been trying to get through uni. I have made a grand total of ONE friend. She is planning to come visit me but she currently has a viral infection with secondary tonsillitis (sp) so we're thinking that will be put off for awhile. I had a group of people i hung around with. There were about 10 people in the group and she is the only one to bother with me if i'm not there. Now the course is finished, although i have not completed as yet, and everyone, bar her, has vanished and didnt even bother themselves to say goodbye.

It sucks and is really hurtful, but as far as i'm concerned they can all sod off. They have no idea what people like us go through everyday, and they never will. If any of them did have to walk a day in our shoes they would simply die. No way would any of them cope.
Maybe i'm not explaining myself very well, but if they cant take a sick friend then, for me, your better off without them. I feel so much better now i dont hang around with those people, no more explaining, no more ' she looks so mad' its heaven!!!
If it makes any difference, i'll be your friend sara! I think theres an ocean between us but who cares!!
Dx - Crohn's - 2006, Depression = 2010
Currently - Humira fornightly, iron tablets, B12 3 monthly, prenatal vits+minerals
Tried - aza, pentasa, questran, infliximab
No crohns' surgeries to date, Episcleritis for 3 weeks,
Allergic to Infliximab
Doing BSc (Hons) degree Equine Science - some support from uni. This year has had to be split in to two.

Regular Member

Date Joined May 2010
Total Posts : 266
   Posted 6/30/2010 12:37 AM (GMT -7)   
SaraOnThisSite:  I am sooo sorry your friends have abandoned you.  CrazyHarry is spot on though.  Most people can't handle long term painful problems very well and its easier for them to ignor, duck away and move on to other friendships.  Truely no one can understand the level of pain, tolerate the weird foods, dietary restrictions or have the emotional skills to connect and have theaputic moments (not to mention have the endurance of a disease that won't resolve).  I often think a lot of relationships are ego fulfilling for the "normal" person and when sacrific and emotional/physical commitment is required it is easier to flake away.  One defense mechanism I have is to expect nothin from no one and that way I am never disappointed - my commitment to relationships is 100%, will give, do and stay firm but just refuse to expect anything.  But when you think of it, these people have lives, responsiblities, obligations and activities of daily living - and this process is draining on any good relationship. 
My personal belief is "don't let the screen door hit your butt on the way out", fire 'em - big loosers!  True friends cry when you cry, laugh when you do and step in to help as needed.  Those are the relationships to tuck into your heart and treasure. 
Take care - and I'll be your friend!  I love meeting new people and developing relationships.  So be blessed, keep looking, the right friend is someone and somewhere where you least expect or think.  Keep the faith! 

Veteran Member

Date Joined May 2007
Total Posts : 1284
   Posted 6/30/2010 1:04 AM (GMT -7)   
Friend problems seem to be pretty common... I've had difficulty with a friend in the past when I was sick a lot...

I wish I knew what advice to give you... but I don't really think I'm very adept at this sort of thing... I often believe I deserve any kind of negative comment directed at me.... and that I don't really deserve friends.... and also... I tend to distance myself from people... so I can kind of understand why someone might get upset with me...

I hope things get better for you... You seem very nice, and it's a shame your friends can't understand what you're going through right now...
I think I am being picked on by life, sometimes. But's that okay. Life and I are good buddies... I know life doesn't mean no harm. It just is the way it is. I can accept that.

Veteran Member

Date Joined Jan 2003
Total Posts : 1668
   Posted 6/30/2010 5:30 AM (GMT -7)   
In the 11 years my Daughter has had IBD (end of high school, through college and in the working world) she has quickly learned who her friends are and who are NOT! Healthy, vibrant peers do not want to be brought down or their fun ruined by a "sickie" friend. I personally call that immaturity. It is hurtful and unkind.

Luckily my Daughter was able to establish a really good core group of friends "who got it". They may not have gotten it right away, but when they did and at least tried to understand the health issue they rallied with great compassion and understanding. Sometimes when my Daughter could not join in on the fun, they would bring some fun to her. This is the way it is supposed to be, but a whole lot of times it is not for people suffering from health issues. Let's face it, IBD is not the easiest health issue for people "to get". It gets a bad rap too often for being a minor belly ache that you are supposed to suck up, not complain about and get on with it. So many people don't get that it is chronic, it is debilitating, it's a pain in the *** and it is for Life until a cure can be found.

I myself do not have IBD but I also follow grumpygi's motto "expect nothin from no one and you won't be disappointed".

Here's to you finding some new and mature friends and send the immature ones a packin!! Those are people you don't want in your corner.

Regular Member

Date Joined Feb 2007
Total Posts : 430
   Posted 6/30/2010 6:01 AM (GMT -7)   
I had my first symptoms at 21 and was diagnosed 3 1/2 years later. I was, and always have been, the type that doesn't want anyone around me when I'm in a serious flare. I managed to keep working and still am but if I was home sick - don't call, don't visit was my motto. So Sara, I can't relate to the problem :) I will say this on the subject of friends: pick them carefully, be the friend to them you want them to be to you, and pay attention - you'll figure out soon enough the few that will be there for you and those are the ones you hold close. All of the others are just "acquaintences". Most people end up with maybe 2-3 true friends in their lives and that's the way it should be in my opinion.

artist guy
Veteran Member

Date Joined Jan 2010
Total Posts : 1373
   Posted 6/30/2010 6:24 AM (GMT -7)   
sara, a good idea is to find a cd group meeting in yuour community and go introduce yourself, I go once in a while to one in san diego. but then again I'm married for 30 years, but still that is a way to meet people that have your same interest, cd. and they are sooooo understanding.

artist guy

Regular Member

Date Joined Mar 2010
Total Posts : 303
   Posted 6/30/2010 7:13 AM (GMT -7)   
Sara I am so sorry that your friends are not understanding this. The only reason I can give is when you are young and not sick you don't really understand it. When I was your age I didn't even fathom turning 30 years old. I was young and having fun. Now I am 38 and I truly believe a lot of your friends issues are immaturity. You are more mature probably because of this disease. It can be hard being chronically ill around other people who are healthy because they just don't get it. I know it doesn't seem like it now but you will feel better. You can turn to us anytime you need to but I know it is not exactly the same having someone in person there.
Dx with crohns February 25, 2010. But suspect I had it since 2002 with very mild symptoms.
4 lialda a day.
3 entocort daily for the next few months
hyosamine for daytime
Bentyl for evening

Veteran Member

Date Joined Oct 2009
Total Posts : 1054
   Posted 6/30/2010 7:36 AM (GMT -7)   
Sara, I'm so sorry that you're dealing with this. I totally understand your pain (check my post "nice cup of tea"). It is unbelievably frustrating to deal with people who are healthy and don't know how hard it is to be sick. One of my best friends constantly tells me that I'm overreacting, complaining for attention, and that I'm a hypochondriac. It is devastating, because I just want him to be there for me. this disease can make things so lonely so fast, especially if you're not married and live alone. I had to drive myself to the hospital for my last surgery and stay in the hospital by myself. It sucked. It does make you really strong though...
Stephanie, 28 years old
Diagnosed with Crohn's Colitis March 2000
Possible diagnosis of IBS-D
Total Proctocolectomy and Permanent Ileostomy 3/18/10! :)
Blockage/Ileo revision 6/8/10 :/
Tried: Asacol, Remicade, 6mp, Humira, Xifaxan, Apriso, Imuran, Rowasa Enemas, Colocort Enemas, Psyllium Seed Powder... Tried Probiotics: Align (with no change except bloating) and VSL #3 DS (AWFUL diarrhea).
Currently taking: Prenatal Vitamin, Vitamin B 12 Complex, Biotin, Vitamin D, Calcium, Flomax (for urinary retention). 

Regular Member

Date Joined Jun 2010
Total Posts : 318
   Posted 6/30/2010 9:01 AM (GMT -7)   
I can relate. I try not to bring it up to any of my friends as I have found that they don't understand. I come to the forums. They are a G-D send. I have always said this is a very loney diease.
UC 1996
5 asa, predisone, 6 mp
X-mas present- Dec 26, 2000
Emergency j-pouch surgery
Multiple complications
J-pouch redo- July 3,  2001
Take down-Jan 3,  2002
Chronic pouchitis: cipro, pentassa, xifican, cortioam, canassa, leviguin, lexapro, vit D, fish oil, probiotics, lot's of other vit's
Latest flare April 27 2010 Hosptial for 1 week-remciade
Possible CD, Possible pouch removal-anxiety-can you blame me?

Veteran Member

Date Joined Jul 2006
Total Posts : 6927
   Posted 6/30/2010 11:14 AM (GMT -7)   
Some people have small hearts and some people have big hearts and until one has really been in a place where you get what people need when they are hurting a lot, sometimes one gets stuck with people who have people who have the handicap of a small heart. You are definitely not alone in your loneliness, but try not to let other people get to you it is their heart handicap not yours.
Forum Co-moderator - Crohn's Disease/Thyroid Disorders:_All comments have the caveat contact your local health care provider.

I will find a way or make one. –Phillip Sidney 1554-1586

All that I am and all that I shall ever be, I owe to my Angel Mother.

The Bucket List- Have you found joy in your life?  Has your life brought joy to others?

Make sure your suffering has meaning…

Regular Member

Date Joined Feb 2006
Total Posts : 214
   Posted 6/30/2010 11:44 AM (GMT -7)   
Yeah, I know I'm young but I mean, I'm done with college, I'm done with grad school, and yes, my friends still like to go out and drink but I thought these "core" group of friends was a little bit more mature. Im just not going to tell them anything, feelings wise, because it blows up in my face! Try to be honest and boy, look where it gets ya.

I do really love and appreciate the forums, but it would be nice to have some interaction in person. I found one meet up group via the website but it meets all the way in the NYC (an hour away from me) which is okay, but they havent had any meetings since April. The Crohns and Colitis Foundation of America only has these specific groups for walk ins like "Dealing with Crohns when you're a Woman - A Wife, a mother, etc" and I am neither of those things. THey also have a "Dealing with Crohn's when you're part of a Couple" group. Geez, didn't know you need to have a boyfriend just to have a support group! The only regular support groups you have to committ to going everytime, sign up in advance, and pay in advance. If they really are support groups for crohns then they should know that um sorry, i cant sign up in advance because i may be too sick to go one of those days!

So moral of the story kids....if you want a support group that you can just drop in on and go "as needed" or when you're up to it you need to pretend to be a mother or a wife, or pretend to be part of a couple! Yay! Sheesh, who knew being single was such a sin

I'll just battle the lonliness that comes with this disease with silliness and sarcasm, i suppose!
25 year old female, diagnosed with Crohn's in 2002 after being misdiagnosed with Lyme Disease for a year.  Have been on Prednisone, Asacol, Entocort, Remicade, and Mercaptopurine (even the lowest dosage was messing up my liver, argh) in the past.
Currently on Avalox (well, when I'm not throwing it up...), and a quick power pack of Pred, ugh  

Trying to get on Humira but having insurance issues.. :(

Regular Member

Date Joined Feb 2006
Total Posts : 214
   Posted 6/30/2010 11:44 AM (GMT -7)   
oh, and you guys of course! hehe <3
25 year old female, diagnosed with Crohn's in 2002 after being misdiagnosed with Lyme Disease for a year.  Have been on Prednisone, Asacol, Entocort, Remicade, and Mercaptopurine (even the lowest dosage was messing up my liver, argh) in the past.
Currently on Avalox (well, when I'm not throwing it up...), and a quick power pack of Pred, ugh  

Trying to get on Humira but having insurance issues.. :(

Veteran Member

Date Joined Jan 2010
Total Posts : 1120
   Posted 6/30/2010 11:44 AM (GMT -7)   
I am sorry to hear about this pain. Have you considered seeking your friends at your church. I would hope that the folks who are activly participating in church groups would be the kind of folks who would not just be fair weather friends. I know if you were at my church we would welcome you with open arms.
BTW I use church as this is what I am used to. I am sure the same thoughts would apply for Temple, or Synagoge or what ever would make you most comfortable.
For your consideration

Symptoms since I was 15 (now 50), 2 “definitive” IBS diagnoses but no treatment except “eat more broccoli, you are not getting enough roughage", CD in small bowel diagnoses with Pill Cam 06/2010, Kapidex 60mg, Prednisone 30 mg (tapering down over the next couple of months), Pentasa 4,000 mg, Amitripyline 10 mg, SCD, Freeda  - Multi Vitamin  & 2000 UI D3,  Melatonin 9mg

Regular Member

Date Joined Jun 2010
Total Posts : 113
   Posted 6/30/2010 1:34 PM (GMT -7)   
Hi Sara,
No one knows what it's like to be a sick person unless they have experienced it themseves or through a close family member. They just don't know what it's like so maybe they assume a person is enjoying the attention of constantly being ill or is self centered if that is what preoccupies their mind. Of course they just don't get it, and hopefully they'll never have to. My advice is to make it a special point to talk to your friends and ask them what is going on in their lives so they know you don't think it's always all about you. Of course I know how it is, and I'm sure you aren't like that. I have seen sick people in the past that just monopolize every conversation with their illness and frankly, it isn't always what everyone wants to hear. Again, I'm sure you aren't like that but I just wanted to say that I try to be mindful of this in my own life.

Veteran Member

Date Joined Feb 2010
Total Posts : 925
   Posted 6/30/2010 2:06 PM (GMT -7)   
I have seen over the years that people who are ill (or dying) are lonely.  One thing, maturity or not, is that people typically don't hang out with the sick and dying because it quite simply reminds them of their own mortality.  It is usually only the closest group of friends that don't abandon each other.
Diagnosed (FINALLY) UC Sept 09/Diagnosis amended 5-3-10 to Crohn's
Taking Pentasa 500mg/8x/day
Entocort 3X/day
Bentyl as needed
1000 mg Vitamin C
Prilosec 1X/day

Regular Member

Date Joined Apr 2010
Total Posts : 171
   Posted 6/30/2010 2:26 PM (GMT -7)   
Sara, I feel your pain :(
A lot of people truly don't understand how difficult living with Crohn's is.

I know, before I was diagnosed but was sick all the time, my friends would get mad because I didn't feel like doing anything.

After my diagnoses, some people thought I was using my illness as an excuse to "get out of doing things"
Trust me, I wish I got out and did more!

Have you tried emailing or printing out some literature on Crohn's and giving it to your friends? Maybe the truly don't understand what you're going through. I did that with a few of my friends and after they read about it, they still didn't understand it well, but enough to know I wasn't trying to put them on the back burner.

Hope this helps!
26 y/o female from Kentucky.
Diagnosed with Crohn's in 2004. Colon resection in 2004
Had symptoms since about 2002.
Currently on 2000mg daily of Sulfasalazine and 1 tablet daily folic acid.
Tried Pentasa and Entocort in the past, with no improvement.

Regular Member

Date Joined Feb 2006
Total Posts : 214
   Posted 6/30/2010 3:10 PM (GMT -7)   
I don't really have a good temple group right now. I miss my old temple, but membership cost too much so im not really familiar with the new congregation at this new place my mom goes to.

I understand Crohns isn't something people can really "see" so that's why i tried emailing letting them know that even though I'm not in the hospital right now, I'm actually sicker than when I was a few months ago. And it's hard for me to be like "hey I need you" but I flat out said well, hey I need you, please visit me. Eh. I have one or two friends that get it, and the rest don't.

I had one friend yell at me because she read my email and then couldnt concentrate on the patient she had to see (she's a social worker) I'm sorry, but you're a grown up. Learn how to compartmentalize your life of hey, try not checking your facebook email at work. How am I to know I can only email you my feelings at certain hours? Oi vey!

What doesn't kill ya makes ya stronger....
25 year old female, diagnosed with Crohn's in 2002 after being misdiagnosed with Lyme Disease for a year.  Have been on Prednisone, Asacol, Entocort, Remicade, and Mercaptopurine (even the lowest dosage was messing up my liver, argh) in the past.
Currently on Avalox (well, when I'm not throwing it up...), and a quick power pack of Pred, ugh  

Trying to get on Humira but having insurance issues.. :(

New Member

Date Joined Jun 2010
Total Posts : 1
   Posted 6/30/2010 3:29 PM (GMT -7)   
Dear Sara,
I am so sorry that your "friends" are not really "friends". I can only say that people are limited, because they are human. I've been battling this crazy disease since 1993 and the friends that have stayed and I've had the opportunity to grow with have been a tremendous blessing. Family has deserted me, Friends have departed, but one has never left me: God. yep, Jesus Christ. He brought me a wonderful man, a great church family and two beautiful kids, but guess what, they are all human, and they all fail. IAnd I fail them too!

I will pray that instead of finding another person that will bless you, but inevitably fail you, that you will connect with one that won't- God. He loves you. Even when your sick, with a leaky gut and a leaky butt, He is no respector of people. He loves you! He brings safe people in, and teaches you to discern who is right for you. People are People. God is God. It might sound a little out there, but It's the truth. And this will set you free. From expecting other people to do what only God can do. Fill all of your leaks, and hurts.

36 yo female, dx crohn's 93 when i was 19. two little ones no
no surgeries
Had a perferation that closed.
Hospitalized 5 times in the last year, with three bowel obstructions
currently having a 2 year flareup- Have been on prede, remi, 6mps and going to switch to Humira

Elite Member

Date Joined Sep 2005
Total Posts : 10404
   Posted 6/30/2010 3:44 PM (GMT -7)   
I echo what all the others have said, but also wanted to congratulate you for communicating your feelings to your "friends". That took real courage and a lot of self-respect, and I admire you for it. Please don't lose that part of yourself, or allow it to be squashed just because you had a bad reaction this time. It's really important to be able to acknowledge and communicate how we feel.

Hang in there. We all empathise: most, if not all, of us have lost lots of friends because of this illness. It's hard, especially when we're young.

Co-Moderator Crohn's Forum.

Medications for Crohn's ~~ Diet and Nutritional Therapy for Crohn's ~~ Dealing with Abscesses and Fistulae ~~

Veteran Member

Date Joined Mar 2008
Total Posts : 1766
   Posted 6/30/2010 4:34 PM (GMT -7)   
Darn, I was hoping people would be more mature after graduating undergrad/into and after grad school. Guess not. *sigh* There are always books and TV...

"everyone became an acquaintance at best. no one visited or called. i found out that if you are not actively social with your friends, they fade away."

This (as well as everything else CrazyHarry said) is so true.

Regular Member

Date Joined Mar 2010
Total Posts : 49
   Posted 7/2/2010 11:30 AM (GMT -7)   
It's unfortunate how your friends are acting. My friends did the same, especially a few of my sorority sisters who just couldnt seem to understand how drinking could negatively effect me if my disease was in my intestine. Or they would just be like "oh well you cant drink?!?! Great, you can be our DD!!!...." Uh, no. Anyhow, until someone has to deal with this or something similar, they just dont get it. I have maybe one friend that I can count on, and then my fiance (but I had to weed out a LOT of boys to find this one.).

Its unfortunate that it is hard to find a counseling group too. I live in the Midwest, and the closest one is 3 hours away. I do, however, have a friend who has Crohn's, so at least 1 person knows what I go through. But it sucks, especially when your "friends" arent there for you -- especially if you have been there for them.

I wish I lived closer to you, and knew you. I would visit you!

Hang in there girlfriend!
Diagnosed at 17, currently 23 :)  Have had 1 resection so far.  It's been an adventure!

Veteran Member

Date Joined May 2007
Total Posts : 589
   Posted 7/2/2010 7:43 PM (GMT -7)   
My friends occasionally say/do stupid crap like that. I have punched them for it.
Diagnosed with Crohn's late December 2004. Narrowly avoiding a full-blown flare using nothing but sheer awesomeness.

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