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10-23-2012, 10:36 PM   #1
crohns0249
 
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Lonely

After being diagnosed in february, I was unsure of what crohn's was, but incredibly embarassed to be "That kid" with anything that made me different, so I told no one. Literally the only people that knew in my life were my doctors and my mom. But between doctors visits, hospitals, and feeling awful all the time, keeping this "secret" became a huge burden with my friends around all the time. It was my senior year of highschool! I was trying to keep up with school, work, and cheerleading. I wanted to hang out on the weekends, and it was just too much. Eventually I started pushing people away subconsciously. After turning down friend after friend they eventually stopped asking. My boyfriend broke up with me, and i literally had no social life whatsoever. I spent several months like this and was unaffected because the majority of the time I was laying with a heating pack on heavy pain meds or wishing I could be, and when I was interested in going out, I felt like I could hop back in wherever. (it was the summer and everyone was doing something!) but come august, I was too sick to go to the college I had planned on going to which was devastating, but even more so was the fact that all my friends were heading off to the college of their choice or working and I could do neither! Now I'm in this rut of being lonely and unsure of what my next steps should be. I already attempted some college classes in the summer and ended up coming back home and in the hospital, then i got out and started working and went through the same process and spent several more weeks in the hospital and went through another flare up. I feel intimated and lonely and wondering how to start over. I'm still sick about every 3-4 days. but I want to get out of this town, or at least find some friends! I'm not really sure what I'm looking for; help? personal experiences? stories? anything would be appreciated!
10-23-2012, 11:17 PM   #2
Jennifer
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Really all you can do while you're still sick is just go day by day. Planning college and work is hard when your illness is still so unpredictable. In all honesty I think it is possible to fall back into any group of friends you used to have. If they are willing to be your friend then they're worth keeping in contact with.

When I was sick before my resection my relationship with my bf was falling apart. He was depressed all the time and so was I so we hardly hung out with any of our friends. We'd go to a mutual friend's house sometimes for a party and have fun there but for some reason would always fight after (something along the lines of me having fun without him, or not hanging out with him enough, I dunno). One day I felt kind of sick so I stayed home (didn't have a car, my parents and bf would drive me around) and I called my bf who was apparently at a party at our mutual friend's house. No one told me about it or called me to ask where I was (I was friends with everyone there yet so was he) so I asked if he would come pick me up, he said he couldn't cause he had been drinking, so I asked to talk to some other people (who I know don't drink) and they acted weird on the phone with me. Lots of pausing, muffled whispering etc. I offered each one of them 20 bucks (a lot of money to me at the time) to come pick me up. They all said no. Basically he was having more fun without me and I guess all our friends were forced to make a choice that night. I don't hold it against them of course. No one wants to be put in that position. Eventually him and I broke up and I stayed friends with the ones who were worth my time. I dunno how this story got away from me or where I was going with it anymore but you will learn who accepts you and who doesn't. Everyone knew about me having Crohn's we just never talked about it or how it affected our friendships. Maybe I was just a downer to everyone, I don't know.

Point is I have friends now and did finish college (had a rough 4-5 years in community college to start out) and got my Master's in Sculpture so I could teach sculpture at the college level. Most friends have come and gone along the way (along with boyfriends but I'm happily married now). I really only have enough to count on one hand who I could contact years from now and we'd pick up right where we left off.
__________________
Diagnosis: Crohn's in 1991 at age 9
Surgeries: 1 Small Bowel Resection in 1999; Central IV in 1991-92
Meds for CD: 6MP 50mg
Things I take: Tenormin 25mg (PVCs and Tachycardia), Junel, Tylenol 3, Omeprazole 20mg 2/day, Klonopin 1mg 2/day (anxiety), Restoril 15mg (insomnia), Claritin 20mg
Currently in: REMISSION Thought it was a flare but it's just scar tissue from my resection. Dealing with a stricture. Remission from my resection, 17 years and counting.
10-24-2012, 03:03 AM   #3
Gianni
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Hi there,

I had a very similar experience when I was first diagnosed. I also didn't want to be "that kid" so I downplayed my illness to my friends a lot saying it was nothing and I am fine even though I wasn't. They would ask if they could visit me in the hospital and I would just say that I'm doing better and will be out soon so there is no need. During the next few months I avoided my friends because I didn't want to be seen as this sick kid and eventually we all just grew apart because I kept pushing them away.

This was the summer after graduating from high school. I too couldn't attend my first year of college. Many of my friends went off and I was stuck at my house alone. It sucked but i took this time to get healthy and take health into my own hands so by the time I did attend my first semester of college I would be able to make lots of friends And i did! I looked healthier and could keep up with my healthy friends so I felt normal again.

I think it is just important to try to find some peace within your situation and find comfort in your loved ones who are supporting you now. Start exercising, eating right, relaxing, and listening to your body and soon you will feel like your old self... The friends will come I promise.

All the best

Gianni
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10-26-2012, 01:57 AM   #4
afidz
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I started getting sick at 17, and a lot of my friends stopped talking to me because I never felt good and I just said that get out of hanging out. Eventually I went to the doctor and was diagnosed with Crohn's. I told the few friends I had left, but I pushed everyone away. I just wanted to lay in my bed and cope with it on my own. I started becoming depressed and went into denial about the whole thing and made myself even sicker. I went through periods of this behavior on and off for about 2 years. I would get mad any time some one asked me how I was feeling (not sure why that question bothers me so much) I could not hold a job for anything because I was constantly calling in sick. Trying to go to school was a joke. I was in and out of hospitals, and everytime I was sicker than before. During one of my last flare ups, I almost died. I wasn't taking anything seriously and lost a lot of blood. From that point I knew I had to turn things around. A couple months later, I moved 1000 miles from home to start a new life. I needed to redo me. The stress of the move put me into the worst (and last) flare up that I had ever had, but it was worth it to me. I found a new doctor right away and about 3 months after the move I went in remission for the first time. I had my life back. I made new friends. I found a great job and met the man I am going to marry some day.
I kind of rambled of, but the point is, Crohn's sucks. There is no beating around the bush about it. But there is light at the end of the tunnel. Just worry about managing the disease for right now, and the rest of it will fall into place when the time comes.
10-26-2012, 04:34 AM   #5
Jer
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Positive thoughts. I do believe that being positive and unstressed play a big role in my life with Crohn's.
Of course we all have our moments of misery and/or depression/hopelessness, but you (or I should say I) can not let it take over my life. After the intial diagnosis I was in a similar mind frame as you for months. I finally picked myself up and said enough is enough, I can't let this illness define my life. Sure, it's not always easy, but anytime I start feeling sorry for myself, I remember that there is always someone that is worse off than me, so I can't complain.

So, it sounds like you've had enough of letting our illness control your life. It's not always easy, but try and be positive, pick yourself up and dust yourself off and try and take your life back.

God bless, I hope that things turn for the better for you.
10-26-2012, 10:31 PM   #6
EthanPSU
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I am completely in your boat. However my crohns is a secret to everyone except my family and ex's. I have a decent amount of friends however from being very outgoing buy currently im living at home and all my friends are like 8 hours away. I am desperately trying to get a job neat them and move because I am by myself in this crappy town. I literally spend 6hours a day online applying to jobs buy no luck so far. I stay positive tho and just keep my mindset in the state that this is only temporary and I will move soon.
10-30-2012, 06:02 PM   #7
mac4943
 
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I am sorry to hear of your struggles. I know what you're going through. The first two months of my senior year of highschool I was put on homebound where a tutor came to my house instead of me attending school. I was so sick and most of the people who I thought were my friends were unbelievable. I can not even begin to tell you their rudeness. They spread rumors about me and would try to purposefully publicly embarrass me.

Find one person who understands. One good friend is better than 20 fake ones. One girl, one who I probably would never have even looked at twice before my disease became my best friend. She was so kind and caring and had gone through struggles of a different kind in her life. She stuck up for me when others put me down, she waited outside of bathrooms for me, she watched TV with me when I felt too crappy to go out.

Don't worry about the direction of your life. I know that sounds crazy, but the main thing is that you get well first. You can not do anything else with your life until your health improves. Don't put added stress on yourself. Maybe try online classes? You could do them in the comfort of your own home.

I am always available to talk and can completely relate to you. Just send me a message.
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Current Medications: Humira, Methotrexate, B-12 injections, Folic Acid, Lexapro
11-03-2012, 09:21 AM   #8
Helen
 
Join Date: Aug 2012
Location: United Kingdom
Hi,
I found out i had crohns this year after going through hell for 9 months. I was in my second year of uni, and i really struggled to keep on going and do all the work. I understand completely that when you have it, and particularly have the bad flare ups you really don't want to socialise or see anyone, luckily my boyfriend was amazing and understood even though all the time i felt like i was letting him down. My friends were also supportive and knew that i wasn't well enough to see them. My advice would be don't be ashamed about what you got. I too was embarrassed but now it doesn't bother me who i tell. If anything you should be proud of what you have dealt with. There is no end to IBD but then there shouldnt be an end to your life too. Don't give up on achieving what you want because it's still possible, even though sometimes it's hard. You will find people that will be supportive. If you feel so ill all the time maybe you should consider seeing your doctor or specialist for medication, because i was like you not being able to do anything, but not im on corticosteroids i can pretty much do most things i did before. Good luck
Helen
11-17-2012, 05:35 PM   #9
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Though I did not have as similar experience, I did have a rather unique one that may offer some insight... I was diagnosed in August 2005, between 7th and 8th grade in middle school. I had been living in Louisianna with my mother whom I had isolated myself from by going to a youth center a mile away every day after school where I would do my homework and more specifically: not eat. I would get home and eat a few bowl-fulls of cereal and sit in front of the tv before doing the dishes and going to bed. After about 5 months of this I had become so constipated that I was getting a fissure "downstairs" that was making me almost pathologically afraid of using the bathroom. So much pain I would cry (keep in mind, 7th grade, am now 20). I visited my father in Washington for Thanksgiving and after telling him and showing him the blood he took me in right away to see a doctor where I was giving metamucil to help fiber-up. After another 2 months in Louisianna and no real change, I was forced to move back up north and continue the 7th grade where care was accessible. I got diagnosed in the summer and from then on I developed a mindset that I have read on this site of other people having (one of the main reasons why I joined since I'm REALLY struggling right now) which is where you don't allow yourself to let Crohn's get in the way of your life. I smoke, work in construction even though I'm 5'11" and only 140lbs, and am trying my best to be a man worth looking up to for my son. I've been hospitalized a few times, though what really pushed my friends away is the mindset I've developed makes me come off as being cold, uncaring, rude even, and though I've tried being happy and friendly to keep appearance up, trying to be happy and all just makes the depression go through the roof.

So though I did go a little far in how everything has been for me, I hope that my story has brought some insight into how socializing and appearance can go.

I guess the connection I was trying to make is: By not hanging out and staying home for your health will push your friends away, so will going out regardless of your feeling sick and pushing yourself to be around even when you feel like you may pass out. If in resting for your health you lose some friends, so be it. By getting your health back you'll be able to resume social activities and thus get new friends or even get your old friends back. Don't hold anything against them either since most people really don't know how to react to a friend that is sick... Am I caring too much (Smothering them?) or am I caring to little (abandoning them?)... Nowhere in society can you find a rulebook or how-to manual in dealing with friends that are getting sick or are struggling so most people just back off and try to play it out. It just feels like abandonment since what we want and what we LOOK like we want are two VERY completely different things

Hope you feel better!

~Justin
11-24-2012, 08:37 PM   #10
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I started having problems with Crohn's when i was 14 so I understand your frustration. I tried so hard to hide it from people and then when some friends told others I ended up being made fun of and laughed at. Friends got tired of asking me to go out and do things, only to have me be too sick to go. I was called "flaky" and "annoying". I had so many absences my senior year that I had to home-school. This put an even bigger barrier between me and my friends. Hardly anyone ever called me, even just to see how I was doing - which was horrible because senior year is supposed to be the best year of high school. I tried going to college after high school but had too many absences so I only finished 1 class and was put on academic probation. I tried working some part-time and full-time jobs. They were difficult to keep because I would have flare-ups often. I started to feel like a complete loser. In 2005 I was finally diagnosed and given Asacol - which helped me immensely at the time. I enrolled in college later that year and finished my Bachelor's in 2010. It was still rough - I had another flare during my junior year and lost 30 lbs but I pushed through and utilized my school's disability resources. I did not like being labeled "disabled" but it helped me get my education and it might be embarrassing but talking to professors about it really will help them work with you on completing assignments and re-taking missed exams. At community college I really took advantage of online classes the most I could, this might be your best option for now until your symptoms are more under control. As far as the boyfriend situation goes - he obviously was not the right person for you. I have dated men and some of them are understanding and some are not. The right guy for you will be someone who is unconditionally there for you.

From my experience I can also say if you are still having a lot of flares on the medication you are on you should talk to your doctor about other options to help you. I used to think I was just supposed to be that sick all the time and there was nothing better I could hope for - but there is.
12-04-2012, 04:32 PM   #11
Price
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I'm feeling pretty much the same as you, except I'm not unwell anymore (for a while I hope).

Guess I could start by saying I did have friends at school, sort of. I could never go hang out because I was ill all the time so really only saw them during school hours. As we got older they started speaking to me less, since I could never really connect with them. And this got worse when we split up to do A-Levels, since I never saw them in lessons. I couldn't really get a hold of anyone and no one really wanted to come visit me (for obvious reasons).

After I messed up my A-Levels, the few friends I had left went to university and I decided I had to go back to college. I thought I'd managed to make a few friends there, I mean I couldn't go out but people actually chatted to me outside of class. Though I was proved wrong when I went into hospital for a month, including my 20th birthday, and got no visits/calls/texts, etc. I actually got more texts that month off people I'd never met and only spoke to on the internet than anyone I knew in person.

So now I'm at university, which I thought would be a great time to start getting to know people. And I guess I did for the first two months. I was going out to clubs, bars, just hanging out in general. But I still felt alone. I just couldn't connect to people in the same way that they felt connected to me. I went to see a counselor about it but that didn't help at all. I checked the websites they suggested and none related to me at all, or in examples someones problems could be fixed by just changing one small thing.

I don't know how my story could help you at all, since I'm still lonely and I don't know how to change that. I've tried so many things but it doesn't change the way I think. I guess my only advice I can give you is try your best to be social while you are ill. The longer you stay feeling lonely/depressed the harder it'll be to get out of.
12-04-2012, 06:30 PM   #12
Pirate
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I can't give much advice as I was 28 when I was diagnosed. I have no idea what it feels like to be young and dealing with CD. But my heart goes out to all of you because I do remember what it was like to have a social life in school. I went to a small school so we all grow up together and to this day most of us keep in touch with each other either in person or on Facebook. They are part of my support group that help me through the rough times.
Do what you can when things are good and friends will be there when things are bad. Never let CD defeat you or change the person you are in your heart. There are no good answers to why "we" are the ones to be "blessed" with this disease, the only thing we can do is NEVER let it totally control our lives.

Stay strong and good things will come to you. Stay strong and true friends will find you and be there when you need them.
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Greg Yancer
Diagnosed w/ CD Febuary 1986
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Current meds:REMICADE (CATS SCARE ME), Pentasa, Nexium, Probonics.
12-04-2012, 06:54 PM   #13
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I am so sorry your are feeling like this and dealing with so much at such a young age my son was diagnosed at 9 yrs old and is also very embarrassed about having CD and for years he didn't even understand what exactly it was. He would beg me not to tell his teachers, friends or anyone in fear of them thinking he wasn't normal. I remember telling the mothers of his closest friends when he would go for dinner or sleepovers so they could notify me asap if they noticed him having symptoms. He always tried to hide things and behave "normal" so if his friends all ate popcorn, he would eat it too but suffer terribly for many days after.

I know that he also feels very lonely at times and could never make plans to go out on the weekend or to a birthday party because he would normally become ill and have to cancel anyways. He missed out on several class trips, birthday parties, etc and broke my heart every single time it would happen to him. I take him out to movies and to watch hockey games, etc whenever I can but I know it's not the same as going out with friends but it's all I can offer him and I love spending time with him but I'm pretty sure it's not very cool for a teenager (especially a boy) to hang out with their mom.

Please know that you are not alone and don't push yourself too hard just because you feel or think that you should be working or should be in school. Take care of YOU first and the rest will come in time. The beauty of being young is that you do have lots of time ahead of you so don't stress this small amount of time you aren't able to work or go to school instead use it to get your disease under control then you will be stronger to get out there a conquer the world
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Michelle

Son diagnosed with Crohn's March/03

Right hemicolectomy Oct 30/12

Currrently on Humira
Discontinued Aza Oct/12 (prior to surgery)
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12-23-2012, 11:20 PM   #14
craiglaurasam
 
Join Date: Dec 2012
Location: Long Island, New York
I was diagnosed when I was 13 and put on prednisone for the next 4 years. Being extra puffy and full of acne along with being constantly sick definitely made an awkward time even worse. I was an outgoing, active kid that just retreated inward.

Funny thing happened once I had my first resection at age 17. I found the right medication for me (6MP) and more importantly the right doctor and everything turned around. No more prednisone and it's side effects along with a remission let me go to and thrive at college. I ended up meeting some great friends there and although I still not outgoing as I once was there is no reason you can't be.

The point being that in the moment things may seem like they will never change but they do, remissions happen and life gets better it won't always be like this.
02-04-2013, 04:02 AM   #15
acheallova
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Life with crhons most definitely makes an impact on you no ,matter what age, social life slows down or becomes nonexistent and depression sets in. The most important thing to remember is believe in yourself!! It is your choice to let a support group in, seek counseling/therapy for coping or guidance and do the best you can. Yes, it is a very very personal disease and there will always be barriers, but if we stay positive and go forth with our heads held high, we can live our life to the fullest. Best wishes and thoughts with you!! -hugs-
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02-12-2013, 12:07 AM   #16
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I did the exact same thing. I stopped hanging out with friends because everything just hurt, I couldn't move, I could barely force myself to work. Took a year off from college because I just couldn't handle another year. I had three jobs but since I was in pain most of the time I just didn't make friends, I didn't really talk to anyone.

So instead of going out, I started playing a lot of online games and basically getting my crave for conversation done in the comfort of my own home. I'm not sure that it's the best way to live, exactly, but it was definitely a good option for me at the moment and I don't regret getting involved in online communities. It meant I wasn't alone.

While I really mourn the loss of those years and how much I've changed since my diagnosis, I've learned that you can find something good in everything. If I hadn't become such an online gamer, I would never have met my fiancee! We're getting married in December

Basically what I'm trying to say is, be positive. These are the hardest years of your life, but it doesn't mean they are wasted just because you aren't doing what you imagined/dreamed/thought you'd be doing. Try to treat it like a vacation or a zen way to discover who you really are. I know I certainly did a lot of self-exploration since my diagnosis.

Cheers and good luck!

-Raine


PS: Anyone else play WoW or D3? I stopped playing WoW a few months ago, but my toon should still be [email protected]'Jaeden and if you wanna play D3 sometime, PM me
04-22-2013, 12:20 AM   #17
carlysy
 
Join Date: Mar 2013
Location: Melbourne, Victoria, Australia
I can completely relate to everything everyone is saying. I was diagnosed at 15 and am now 22 and have learnt a few things that may help, especially if you are new to the whole Crohns thing.

When I was first diagnosed I was so embarrassed, I felt broken, different, like there was something wrong with me. In high school I told no one about it but when I started having hospital admission in my last few years people began asking questions of myself and my twin sister (who doesn't have Crohn's). I felt very alone and like no one understood me. I didn't like talking to anyone about it, I never let anyone come visit me in hospital or at home when I was recovering and I too subconsciously pushed away from everyone and lost my connection/closeness to most of my high school friends. I was in complete denial about my disease and did not want to discuss it with my parents, investigate other treatment options or anything!

As the years have gone on and I've become more accepting of my condition and less embarrassed I've become more open with my friends. In university (college) when I have been sick I told my friends what was happening. This was very hard for me to do at first but I was pleasantly surprised to find that they were genuinely interested in understanding what I have and listening to me. They showed genuine concern and said if I ever need anything to let them know. Even still when I do get sick it is only usually a handful (maybe 3-4) friends who are by my side texting me regularly and visiting me but I've found if you open up to your close friends are they are good people worth having as friends they will be there for you and you will become closer.

I've had 2 boyfriends before my current one and told them barely anything about my Crohn's and didn't want to discuss it with them at all. I now have a boyfriend who I have been with for 7 months and 1 month ago I underwent my first surgery to remove 15cm of my bowel. I told him every detail, he watched me in pain, he held my hair back when I vomited, he helped me re-dress my infected wounds and didn't flinch at all the pus - he was amazing! I tell him everything and vent about everything and he is so supportive and amazing. The beautiful thing that has come out of the horrible experience of surgery is that my boyfriend and I have become so much closer and this is when we fell in love. We said the big 3 words (i love you) for the first time the day I got out of the hospital.

I know it is hard but my best advice is to trust in those close to you. I'm not saying you have to go telling everyone but open up to your family, close friends and future boyfriends and you will be surprised how much it helps. By doing this I have become much less ashamed of my disease, more open and honest about it and so much happier because I have better relationships.

All the best sweetheart, I know how tough it is. You will meet new people and make new friends throughout your life and if you can be brave and share with them and let them support you you will be so glad you did.
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