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Crohn's Disease Forum » Support Forum » Vent Away » I have been robbed of my life...


 
06-19-2013, 10:27 AM   #1
nogutsnoglory
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I have been robbed of my life...

I'm sitting here in tears right now. Just declined going to another outing with friends. I am in my 20's a young guy who should be in the prime of my life. Instead I am so weak and sick that I wear diapers sometimes, have pain walking and mainly spend my time on the couch like a vegetable.

I don't go out with friends. When I do it's a rare occurrence. My idea of going out and pushing my limits is going to the supermarket or pharmacy. It's crazy but that is a challenge and it feels good when I can do anything outside of the house.

I am a strong person, I have dealt with so many battles in life but I just want to know that I will have peace. If someone could tell me that in a few weeks or months I will have a normal life again ill be a trooper and just forge forward but it just seems to never end with no hope in sight. This isn't a life, it's so miserable. Thanks for letting me vent. Love you guys this place is amazing.
06-19-2013, 10:31 AM   #2
KayleighMeek
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You are going through a lot and everyone has moments when you need to cry get it all out there and then sometimes it makes things clearer again. It will get better even though it doesn't feel like it now and it's understandable why you feel the way you do.
You are very brave and have been such a support to me and lots of others on this forum. Sending you big hugs
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06-19-2013, 11:01 AM   #3
Ihurt
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I really feel for you. It is NOT fair that people have to be stuck with these God awful diseases. My heart goes out to you. I wish I could understand why it is that good people have to be dealt such a bad deck of cards when you see all these "not so nice people" out there in the world ( murderer's, rapists, wife beaters, etc....) and they seem to walk through life with ease. I will never be able to understand that. Hang in there, and do not give up hope. Sending )))big((( hugs your way notgutsnoglory!!!
06-19-2013, 12:26 PM   #4
bigtruck
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There is nothing I can add buddy your just saying everything that's in my head, I'm hoping for a break some of these days it's the best I can hope for.
06-19-2013, 12:36 PM   #5
nogutsnoglory
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Thanks guys for your love and support. We are all in this battle together. I also don't get why good people suffer and many times bad people seem to have a cake walk in life. There must be a greater lesson out there.
06-19-2013, 12:45 PM   #6
afidz
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I know how you feel ngng, I an still dealing with complications from my surgery in march, I literally go to a doctor everyday. That's my life right now. Going from doctor to doctor. Anyways, when I find my self being down I try to find something else to focus on. Like a project or something that is low key and requires little energy. Like building a model plane or something line that. I decided to go back to school so my brain could focus on something else and it really helped my attitude towards my general everyday life. Maybe plan a movie marathon at your place with all your friends. Is a great way to catch up and have quality time with those you miss the most. Hope this helps
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06-19-2013, 12:47 PM   #7
nogutsnoglory
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Afidz I am also going to doctors every day it's crazy. If I had a dollar for every time I spent in a waiting room I'd have enough money to fund a Crohn's cure. I like the idea of small easy projects to keep occupied. I will try to figure out some things to do.
06-19-2013, 12:53 PM   #8
Cat-a-Tonic
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Aww, NGNG. Big hugs! I really do hope it gets better for you soon. But you surely can still see your friends? Back before I hit remission, when I was having plenty of terrible days and couldn't really go out except to go to work or to the doctor, I would invite a few understanding friends over for movie nights all the time. We'd sit on the couch and chat and watch movies, me with my heating pad on - for awhile we even tried watching the worst movies we could think of ("Cool as Ice" starring Vanilla Ice was our personal favorite bad movie and "Teen Witch" was a close second). So even if you can't go out with friends, are there one or two good friends who would be okay with a night in? Board games are always fun for staying in with friends too, my friends really like Apples to Apples, and if you have a Wii, we've had fun playing some Wii party games too (not the sports type games where you have to exert yourself, but like Mario party type games where you maybe just wave a controller around sometimes). Anyway, just some thoughts for you.

And for what it's worth, I know remission is possible because I'm there. It might take weeks, or months, or even years to get there - but it's definitely possible and it's wonderful. I won't tell you the battles are over once you hit remission, because I still fight hard every day to stay in remission, but I am actually living my life again and enjoying it, rather than just going through the motions and fighting hard to do everyday things. You can get there, keep fighting.

Just a thought while it's on my mind - you've tried and failed a lot of the mainstream meds, correct? Have you looked into stem cell treatment? Or LDN?
06-19-2013, 12:58 PM   #9
Cat-a-Tonic
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To add to Afidz's idea about doing small projects, have you tried anything like knitting or sewing? I'm one of those people who can't just sit and watch a movie, I have to be doing something else too. I'm either on the computer or I'm crocheting. I have made a ridiculous number of scarves, pillows, blankets, you name it. It's easy to learn, you end up with something usable or giftable, and it doesn't require any real physical effort except to keep your hands moving.

I'm also studying to keep my mind occupied and active - specifically, trying to learn a foreign language - I've been studying Korean. Now that's something that'll keep your mind occupied!
06-19-2013, 01:15 PM   #10
Crohnzie Girl
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I kno exactly how you feel. I wish I could say you'll find peace. But the reality is we will have crohns for life which means we are far from "normal". But the good news is Yes, you will have good weeks hopefully even mths. You are entitled to vent, kick, scream and cry. It isn't fair! Good ppl shouldn't have to go thru such pain. But don't stay there for long. Nothing comes out of being depressed. Trust me been there and hit an all time low with my disease. Better days will come. They may not stay long but enjoy those moments. This is also the time separate real friends from fake ones. Pre kids I was a party animal. I didn't care if I was gonna get sick I had no kids to take care of so I drank and hung out all the time. Once I realized I couldn't anymore, boy did my popularity plummet real quick! The ones that did stay and sacrificed weekend nights and watched movies and also there when things got ugly with me, are the ones that are still by myside and are godparents to my kids. THEY are my support system and why after all the pain and suffering I'm still smiling today. Don't give up! Hang in there!!
06-19-2013, 01:34 PM   #11
CrohnsChicago
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NGNG I'm so sorry you are feeling this way today I didn't realize how bad things were for you. I truly hope that you can find some sort of peace soon.

I definitely agree with all the suggestions above. And I like the idea of bringing people to you instead if you feel you are comfortable with having company. I would also like to add something else....do your best every day to practice some loving-kindness. Do one nice thing for yourself. If you like to read, read. If you like to sit in a hot shower, then do so. If crappy TV makes you laugh, then go for it and watch some Honey Boo-Boo!

At the end of each day, find one thing about yourself or your day to appreciate. It could be as simple as you opened your eyes and woke up that morning. It's the little things I find that help me get through even my worst flare days. They remind me that I could be surprisingly even worse off than I actually am in that present moment.

Be very gentle with yourself. It's definitely okay to cry and to scream and to yell and punch your pillows or whatever you need to do to let this stress out. I'm rooting for you and for your health to take a turn for the better very soon. As the days pass, I hope you get better and can find greater numbers of things to appreciate in your day. Stay strong!
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Crohn's-Colitis May 2012
Current Meds:
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Past Meds:
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Anemia/Borderline Anemia - whole life
Generalized Anxiety Disorder - 2009 (Cognitive Behavioral Therapy, mindfulness meditation)

06-19-2013, 01:39 PM   #12
xX_LittleMissValentine_Xx
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Sorry you are going through a tough time. But its ok to feel like this when things are bad! Its all part of it. Your right... We are all in this together. All in the same boat, riding the waves up and down. (I'm getting poetic! )

And Cat has a good point as well about the craft things. I felt like it really got me through the unemployment times when I had goals and something to aim for and enjoy.

Hope you start feeling better soon x x
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06-19-2013, 01:46 PM   #13
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It will get better. As you say you are a strong person who has gone through battles before, this is another. But you will win the war. Stay strong and get someone to come round and watch a film sometime.

Take care
06-19-2013, 02:46 PM   #14
Astra
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nogutsnoglory, I can empathise. Cos I felt the same, so so many years ago.
I was undiagnosed for 15 years and it was the most horrendous time of my life, I was young and also at the quacks every week, only to be told I was mental and neurotic etc.
I missed out on so much and was miserable but...
I'm 50 this year and I'm doing ok, yeah I'm ill, on Humira and can hardly walk sometimes.
But...with age comes a different mind set, I promise.
I don't dwell on the past anymore, it's soooooooooooooooooooo yesterday!
It will get easier, better, manageable, yeah they're just words, but hopefully of some significance and encouragement.
Get your mates round and have a laugh. Mountain...Mohammed or summit like that!
We love you, just keep swimming xxxx
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NOW ON -Amitriptyline 25mg
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06-19-2013, 02:50 PM   #15
guest78
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With everything you are going through it is no wonder that sometimes it all just gets too much. It really is only normal!
I slipped in to a pretty awful flare in September last year, it is only now in June that I am starting to feel any better. I have been on countless drugs, been in hospital twice and been so poorly and in pain that I had to hire a wheelchair. I never thought I would be feeling any better. But I am now 2 weeks on from my ileostomy surgery and have started feeling like there is life at the end of the tunnel.
I promise it will get better! & you will get your life back! I am 21 and have been missing out on living a normal life for so long. You will get better! Stay strong! x
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06-19-2013, 07:20 PM   #16
nogutsnoglory
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You guys are the best. Thanks so much for your kind words and support. I will probably re-read them when I'm down again. This community is so important.
06-20-2013, 06:44 AM   #17
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I'm new here, But I saw your post and I couldn't help but want to post. I'm only 21 as well, And I've never had a social life. I had to drop out of school in ninth grade, too sick to go out with friends, all my friends and my /life/ is online and has been that way for almost as long as I can remember. The advice that was given above was really great, and it's basically what I do to keep myself positive; find things that you can do!

Personally, when my mom and I fell into financial trouble a couple years back I searched for SOMETHING I could to to gain us enough money to keep a roof over our heads while I was in such a bad flare up and unable to work or do much else than lay in bed. What I found was.. Hat making! Maybe you're not the sewing type, but it's an example of something that turned out great for me! I was able to take commissions, earn us extra money, and have fun being creative! Ever since though, it's turned in to so much more. Even though I have bad days where I can do nothing but curl in to a ball and attempt to eat when possible, On my better days.. I started a project with my best friend who lives in the USA, called Random Hats. We both sew fleece hats and sell them for charity. It's a big motivator for me, to give proceedsto something making a difference! Last year we raised $2,061.05 for Random Acts, one of our favourite charities. This year, we're trying again for another favourite celebrity of ours' charity. I'll even be giving him the donation in person at a meet and greet in august! Having something like that to look forward to? Even if it's small, it can be a huge thing to get you through the day. Knowing that no matter what, you're going to make sure you GET To that thing you want to do, reach that goal.

I'm sorry that was a bit rambled, but that's te best I can tell you! Find something you enjoy that you can do from home/bed/the couch. Set a goal, something to look forward to. It can do wonders!
06-20-2013, 07:00 AM   #18
Samboi
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Sorry to hear you're struggling NGNG.
Your kind words and sage advice have been a comfort to me many times when I have struggled. So thank you. I hope I can reciprocate.
When you find the right treatment for you - you will go in to remission and your normal life will resume. And you will meet that special guy.
And until then - you've got us to support you through this tough time.
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06-20-2013, 08:56 AM   #19
mwkwmn
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I totally understand how you feel. I've been dealing with crohns for over 20 years I've had my ups and downs but it seems like our good days are what other people take as bad days. Hang in there you will have better days you just have to get through the trying times.
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06-20-2013, 09:53 AM   #20
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NGNG,

I read your post this morning and it felt like it was my story. I was diagnosed with Crohn's last week and seem to be in the midst of my first flare up. I'm a healthy 35 year old woman, I CrossFit and I eat well. I too feel as though I have been robbed of my life, and I know this is just the beginning for me. I couldn't get out of bed this morning due to such severe cramping and have been running to the bathroom non-stop. It's funny how I just wish to have a solid BM. I know it sounds crazy, but I'm tired of having D all morning. I can't stop crying, I don't know what to eat, and have yet to discuss treatment with my GI.

This scares me...I don't want to live my life like this. I so admire those who have the diagnosis and have found a way to not let it define or consume them. I'm just not even remotely close to that point yet.

Madison
06-20-2013, 05:02 PM   #21
Samboi
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You too will get there Madison.
remission is achievable - and once you're there - you will live life more fully than you ever have before.
I've had CD for over 20 years and yes - the flares are awful. My recent one has gobbled up nearly two miserable years. But I've also enjoyed long periods of remission. And in those years - I've achieved more than I could ever have hoped for. I feel very lucky.
Draw upon the collective strength and support of this forum and you will get through it.
06-20-2013, 05:44 PM   #22
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Hope you feel better. I am going through the same things right now and I can relate to wanting your life back. I don't go out much because of all the Diarrhea I have. Never a solid moment. Hang in there. We will get through it.
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Dx Crohn's Disease in May 2013
Iron Deficiency Anemia (All my life)
Joint Pain and Arthritis
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Tried:

-Remicade
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-Bentyl
-Prednisone (helped, but drove me crazy lol)

06-20-2013, 08:10 PM   #23
If*
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I know we don't know each other but we share much of the pain. So my dear sufferer know that just as you have gotten through the past, you are going to get through this. Looking back I would guess in the tough times you had been through you wondered how you were going to get through them. It is more difficult in the thick of it. You will have better days. The healing you are going through right now will get better ~ I went through similar and cried so much (mostly in the shower). It is hard to look to the future when suffering. The physical and emotional are both challenged. I didn't want to hear how strong I was because I felt like I was falling apart in so much pain. We might never look back on this and laugh but we sure will come out stronger and we will be compassionate, kind people. Better days will come, your type of op takes time to heal and regain your strength. I really do know what you are going through and the adult diapers should become less needed with healing too. You've been through a lot ~ you can get through this.
Much peace
06-27-2013, 05:19 PM   #24
nogutsnoglory
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You guys are amazing. Thank God for this source of support we can offer one another. It would be so depressing without others who get how horrible this illness is.

I feel like I have an MRI every month and no joke lately it's been that way. Insurance fights my doctors on it but they are afraid of a lawsuit because its medically necessary to monitor my volatile condition. I just pray for the day I can go out again and do something simple that others take for granted.
06-27-2013, 05:29 PM   #25
Crohnzie Girl
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Ur right, many ppl have no idea what they take for granted. U remind me of what my dad said...."every time I take a #2 I think of u!" Lol. I'm like thanks Dad. But its true some don't have a clue how lucky they are.
06-27-2013, 05:36 PM   #26
nogutsnoglory
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That's funny my dad feels awful doing his colonoscopy prep and he said you have more diarrhea on a normal day. I think to know what Crohn's feels like one needs to have the flu and a colonoscopy prep at the same time!
06-27-2013, 05:44 PM   #27
Crohnzie Girl
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Exactly, and them sum! Lol
06-27-2013, 06:18 PM   #28
Samboi
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NGNG - you will get better.
Last year I was in a miserable state.
Today - in fact - right now - I'm sitting in the departure lounge, waiting for my flight to China - where I'm going to have an amazing adventure.
Yes - my bag has more medical supplies than clothes in it.
But I will not yield to this stupid disease.
And if I can do it - you can too.
It will not always be like this.
06-27-2013, 07:12 PM   #29
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So sorry you are struggling. Both of my daughters have Crohns and were terribly sick at the same time. Have lived in adult and pediatric hospitals for the last year. They have fought through and both are functional now. You can do this also. I am praying for healing of your body, and a peace to come to your soul. Stay strong.
06-27-2013, 07:58 PM   #30
nogutsnoglory
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Thank you so much for your prayers pipmom I'm very grateful.

Samboi that's awesome, I hope you have an amazing time. Just be careful with eating food not from well known clean establishments.
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