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UC completely changed me

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Posted 9/4/2013 9:17 AM (GMT 0)
I don't want to come here and come off as depressing, even though that is always my case.

I've been sick with colitis for four years now. I have leftsided colitis, and have spent most of the four year very ill. When my flare ups would get better I would go find a labor job, just so I could catch up. This became a pattern in my life. Job to job. I'd lose them all each flare up. I would be going to the doctor quite a bit each year. I don't know what I, or the doctor was thinking.. I'm clearly disabled. Living on my parents couches barely scraping by for four years.. The first year I just spent ill, because I had no idea what was wrong, and had too many idiot doctors that wated my time.

I am going to see a doctor tomorrow. I hope he will take me as a patient. I guess I can explain my situation. I about to become homeless. I am a good looking twenty-five year old male. I had the world a head of me. I don't say this to sound like I have a big ego, or anything. Honestly, I used to, but now I have a very hard time being superficial. I guess you can call me a nihilist.. :-/ anyways, I talked to income support/welfare, or w.e., and they told me they could bus me to a shelter. A shelter? To me, that is just bs. I mean, you're going to send a guy that uses the bathroom 20-30 times a day to a homeless shelter? I'm starting to wonder if anyone gives a **** about UC patients, or other illnesses surrounded by ignorance.

All this is very discouraging. I'm so tired of mooching off my family. I've pretty much used up all that now anyways. I was making very food money at 21 years old. I had a really great girlfriend. She is a teacher, and an amazing girl I ended up losing because of this disease. It became an emotional disaster. I hated myself. I couldn't get out of bed, and I felt dead and useless.. (sorry for jumping all over. Can I blame the prednisone?)

So, if this doctor doesn't help me, then how will I make it in a homeless shelter? Even if he says he will, I am guessing there is a process. It's funny how there is such limited help for permanently ill people. Like, what do they expect us to do? I can't rap my mind around it.. How can I have such a sevear case of colitis and my GI say, "hey, you should be on disabilty." but no, he never did that. Instead he let me struggle for years mooching off others living off whatever money I could make while I was lucky enough to find a job..

Sorry for this being so long. I'm just lost. I haven't even had a relationship since. I used to be in good shape, but what's the point? I just lose 15+ lbs everytime I flare up.

**** it all :)

Sorry for the edit:  HW rules do not allow any discussions of suicide or suicide ideation.  Thank for your understanding.

Post Edited By Moderator (stkitt) : 9/4/2013 1:13:50 PM (GMT-6)

Posted 9/4/2013 10:55 AM (GMT 0)
I know that no one will probably reply to this, which is fine.
**********************************************************
I did read you post and I am sorry things are so tough for you right now. I understand what it is like to feel hopeless at times and it is painful.

Due to the rules of HealingWell I deleted your post as the topic was suicide.


1. No discussion of any illegal activity or threats of violence (ie. illicit drugs, including medical marijuana, threats of suicide, self-injury, or physical harm). Discussions of suicide and self-harm are not permitted.

 

Crisis Information

  • If you think you may have a medical emergency, call your doctor or 911 immediately.

  • If you believe you may be suicidal, call the National Suicide Prevention Lifeline at 1-800-273-TALK (8255) immediately, or consult their website at www.suicidepreventionlifeline.org. They are available 24/7 for anyone in suicidal crisis in the United States. 

  • Don't forget to make use of other sources of support that you may have, such as:
    • Friends and family
    • Colleagues
    • Counselors
    • Clergy
    • Other community members
    • Support workers
    • Other healthcare professionals
    • Crisis center in your area.

We wish you well and hope that you find the resources and support that you need.

Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard any professional medical advice or delay in seeking it because of something you have read on HealingWell.

I am posting this info here for you so that you can easily find it.  I pray that you will not need it but we are not qualified to counsel you re your thoughts as we are peers not mental health care professionals.

Kindly,

Kitt

Post Edited By Moderator (stkitt) : 9/4/2013 1:24:52 PM (GMT-6)

Posted 9/4/2013 10:59 AM (GMT 0)
Your family loves you.

TALK TO SOMEONE NOW!
Posted 9/4/2013 11:15 AM (GMT 0)
I've tried the talk thing with my closest family members or friends. They don't show much interest. I ended up in a psych ward because of my mom. That really helped. Tey really attacked the issue there(sarcasm) I went a long time not talking to people about how I truly feel. I've grown cold and emotionless. I feel empty. Other people here are suffering, and it is nice to read you have such great willpower. Some days I do, until the bubble of inspiration deflates into the sad reality of my life. My posts will probably be for nothing, but at least I am getting it out there. I really won the lottery with this disease. Funny thing is, I am not that lucky.

I guess my biggest fear would to be locked up permanently in a psych ward because I was severely depressed about having UC. If I had some stability, I could deal with it a lot better. I had so many goals. I was a very driving person. I don't know what I am. I feel like I don't fit into a lot of topics anymore. I'm a completely different person. Something I despise..
Posted 9/4/2013 11:30 AM (GMT 0)
If you get the right medication you can live a normal ,healthy ,productive life. Whole life ahead of you.!!

TALK TO SOMEONE!! a professional

Posted 9/4/2013 11:37 AM (GMT 0)
Let UC change you for the better, not for the worse! Trust me, I have been to hell and back too with the disease...I almost died with it once and battled horrible depression through most of my 20s. What do you have a passion for that can take your mind off of UC? What doesn't kill you makes you stronger, and you can get your confidence/ego back by reminding yourself that you have battled more than anyone around you and are much more of a person because of what you have gone through. There are solutions to everything you are battling right now even though it does not seem like it.
Posted 9/4/2013 12:03 PM (GMT 0)
You're still young and have a chance to recover. Live with the hope that you'll be well one day. It's just going to take a bit of effort on your part. I've had doctors harm me the same way they've harmed you, but in the end I'd rather be well.

Please look up Jordan Rubin and see what he did to recover from his disease. Doctors left him to die (don't they all?) but he recovered through proper nutrition.
Posted 9/4/2013 12:13 PM (GMT 0)
I think you need to see professional help, on your own. It sounds as if there also might be something other than UC going on.

You don't mention what treatment options you have tried and there is always surgery.
Posted 9/4/2013 12:18 PM (GMT 0)
Nex,

Welcome to the forum.

Please do talk to your family... there must be someone perhaps your Mom or Dad that truly cares enough to help you through this completely, stand by your side, and take you into their arms and love you for who you are right now in all your suffering.

You've hit rock bottom, I get that. Been there too.

And that's why I know you can't see it right now, but truly you've only got Up to go.

I think you need to address this black depression first, so you can get your head around this disease and see what your realistic options are.

Man, it breaks my heart to read what you've written...

But there are alternatives out there that work and that are not big pharma. But you need to be in the space to be able to take the info in.

I bet your vitamin d3 levels must be very very deficient now too.

 

Posted 9/4/2013 12:20 PM (GMT 0)
Hey man, I've been there..

In fact you sound like me back then. Similar age, same everything. At 25 I had a very large construction company, a house, savings, a bright future and the whole nine yards - then wham. This disease hit and I could no longer function almost overnight. I lost everything, including my house and savings and had to move back home. I had to borrow from family and friends just to cover the costs of meds. I felt I had no "real" life anymore. I went the welfare route just to try and have them cover the costs of meds - and I was actually turned down. I even said to them, keep the darn cheques, just please help me cover the meds... And they said they could not do anything... I was furious... and depressed, broke, frustrated.

There was one night where the pain was so bad, that well, I had enough... I didn't want to wake up... It was very intense.


What happened? Well, for me I awoke the next morning and said OK... enough is enough. I just can't live like this anymore. I have to take control and do something.. anything...

So, I took every bit of strength I had, dragged myself into the GI and simply said I'm done... I'm in the bathroom 20-30+ times a day, constant urgency, I feel like I can't leave the house, I'm in pain, I need a break from this and explained that I cannot work, I cannot borrow anymore, and I don't want to live like this. I said I'll take/do whatever you want me to just make this go away.

I started Remicade a few days later and life changed from that point.

Remicade plus SCD diet got me back on track. I could work, go out, start to have a life....

Take zedenka's advice TODAY... get the right medication (Remicade or Humira), in fact ask for it directly if you're in that bad of shape and have them (The GI) help you figure out how to cover the costs through insurance... There's always a way...

THEN

TAKE Southerngirl6's advice... it's bang on and no better way to write it....

Make it your single purpose, to do get better. Exercise, push yourself, eat right, and so on and when things get tough remind yourself what you went through and overcame...

You'll have a different outlook on life... and you'll appreciate more...

Start by getting the right meds and consciously choosing to get better. In fact, get your ass up, go outside and go for a walk... think about how good the walk feels, and think about what you really want... then go ask your GI about Remicade or Humira.
Posted 9/4/2013 1:16 PM (GMT 0)
What meds are you currently on? I thought you were at your parents house? How come you're facing homelessness soon?
Posted 9/4/2013 1:38 PM (GMT 0)
Nex,

Please listen to peoples advice like canadamark and southern girl they are so right. we have all been there at some point and had these thoughts, i my self am 26 i was diagnosed at 21 i had everything then this hit over night i barely scraped through my last year of university got a terrible great lost my girlfriend over it like you pushed her away and to this day i havent got the balls to tell her it was this stupid disease that was  making me be a arsehole. And sports my biggest love in life football i had to stop altogether it was a horrible time... But like canada mark says one day i just thought to hell with this i am taking control i got myself to the docs and wouldnt leave untill they sorted me out.

Now im 26 i still have the odd flare but with correct diet, correct meds and listening to my body i am getting back on track again, socially i feel a lot more confident ive started saying yes to friends when they asking me to go places without first wondering if there are gonna be any bathrooms, ive started playing sports  again and also started dating my confidence is back.

What i am saying is there is light at the end of the tunnel and it will make you a stronger person,

good luck man!

Posted 9/4/2013 3:14 PM (GMT 0)
I kind of feel guilty readying all your replied. I was feeling pretty low last night. I'm in a lot of pain writing this. If I lay just right, then I can decrease the pain for a while!

Someone mentioned above that I might have different issues besides colitis. I feel like being a dlck here, but maybe you are right. I am stubborn as hell, and dislike people for the most part. I do test as an INTP when it comes to Myers Briggs. Might Be just another term for introverted ******. Would you believe me if I told you I was a better ****** before my illness?(I have no idea how to explain the tone to that last sentence)

I kind of felt worked up because of reading some old emails from an ex I was with around the time I ended up sick. It was a very hard time for me. I remember laying in bed for days not eating just wish I would die. Passing out sittin up on the toilet. Walking around pale as hell. It was a good thing twilight was out around that time. I mean, all the blood, skinniness, and paleness. I was a pretty big deal...

We should take very ill people and make them very famous, so when they die we can be like, "and that's life, kids!" I still think the underlining message would go unnoticed to most. I am talking about the people who wok hard their whole life like they are getting a golden cookie at the end of the tunnel. Yet, I am te one with psychological issues? I see life for what it is. A big cosmic joke. A lot of people think they are so significant. This kind of thinking leads to nihilism. Why are people so afraid of the truth? Why am I so conflicted with my rational and emotional side. Why did I ever have to come to this kin of thinking...?
Posted 9/4/2013 3:24 PM (GMT 0)
Nex: Suicide is NOT an option. With that said.....you have this forum to talk to. People here have been through hell and back and survived and are happy.

As far as your ex goes....delete the old emails...time to start looking ahead. No other "being" should ever have control over YOU. Do not give anything that is negative any kind of thought or energy. All energy should be focused on YOU and what is best for YOU.

With all that said, are you on any medications right now? What does your diet consist of?
Posted 9/4/2013 3:29 PM (GMT 0)
Have you in fact applied for, & been denied, disability benefits? Your GI is not the person to apply- you need to do it yourself. And you can apply for benefits based on your mental health also, not just physical. It does involve appointments, paperwork, etc. You can't expect other people to take care of you. And let's face it, most of the people on this forum have been in horrible flares at one time or another, unable to work, leave the house, etc. Everyone has walked around looking like hell, skinny, pale, shaky, etc. It'll pass. I bet UC has completely changed everyone on here. Stop moaning about it & try to get yourself some monetary help. I work for a non-profit healthcare organization, & let me tell you- the amount of people I see on disability benefits is unbelievable.
Posted 9/4/2013 3:30 PM (GMT 0)
what meds/diets/supplements have you tried? have you considered having surgery? you can't apply for disability or sick leave or unemployment insurance?
Posted 9/4/2013 3:45 PM (GMT 0)
ok, did you see your GI? Go see him and tell him how down you are feeling-maybe he can refer you to someone that deals with depression that goes hand in hand with chronic illnesses. Lord knows, we have all been there. I don't think I was quite as bad as you, but I spent weeks in bed, crying, sleeping, feeling generally miserable and no good to anyone....just a burden. You have to find the right team of doctors and just spend some time getting better. You are in my thoughts and prayers. I hope you find some solutions to your issues.
Posted 9/4/2013 3:53 PM (GMT 0)
I'm on prednisone. If I can get on a disabilty, that will be my backbone to getting better. I could finally focus on a good diet, and have the stability to do so. This prednisone is making me go insane.

Yeah, I shouldn't sit around here moaning. I get it. It's all just word in the end. A lot of people are going through the same crap as me, I know.. You see a lot I people on disabilities? I hate the idea. I'm not a lazy person. I do grow tired of the discrimination towards disabled people. Obviously a lot of them can't help it. People should be happy to have their good health, ad thankful to pay taxes towards disabled.. Instead a lot of people discriminate, and hate on the disabled. It's quite sad, really. I'm starting to think more people are sociopaths than not.
Posted 9/4/2013 4:11 PM (GMT 0)
I kind of feel guilty readying all your replied. I was feeling pretty low last night. I'm in a lot of pain writing this. If I lay just right, then I can decrease the pain for a while!

Someone mentioned above that I might have different issues besides colitis. I feel like being a dlck here, but maybe you are right. I am stubborn as hell, and dislike people for the most part. I do test as an INTP when it comes to Myers Briggs. Might Be just another term for introverted ******. Would you believe me if I told you I was a better ****** before my illness?(I have no idea how to explain the tone to that last sentence)

I kind of felt worked up because of reading some old emails from an ex I was with around the time I ended up sick. It was a very hard time for me. I remember laying in bed for days not eating just wish I would die. Passing out sittin up on the toilet. Walking around pale as hell. It was a good thing twilight was out around that time. I mean, all the blood, skinniness, and paleness. I was a pretty big deal...

We should take very ill people and make them very famous, so when they die we can be like, "and that's life, kids!" I still think the underlining message would go unnoticed to most. I am talking about the people who wok hard their whole life like they are getting a golden cookie at the end of the tunnel. Yet, I am te one with psychological issues? I see life for what it is. A big cosmic joke. A lot of people think they are so significant. This kind of thinking leads to nihilism. Why are people so afraid of the truth? Why am I so conflicted with my rational and emotional side. Why did I ever have to come to this kin of thinking...?
Posted 9/4/2013 5:47 PM (GMT 0)
Nex,

I'm quite a bit older than you but I can truly relate to your views and how you feel...it doesn't seem fair to be born just to suffer then die, life is what you make it, regardless of the struggles and everyone in this world has some struggles.

I got sick in my early 20's with crohn's colitis (crohn's affecting the colon) and I was a new wife and new mom and this disease made all that harder but I'm still a wife and a mom and now a grandma too...and I know that my life could have been a lot harder after getting sick...makes it easy to take it all for granted, my hubby and kids have stressed me out over the years but that's life right...if life was smooth sailing there would be no more point to it compared to it being a struggle. It just is what it is and that's why no one but you can control it as best you can.

I hope you get professional help because like everyone else here, you deserve a good life too and it's completely possible even with having UC.

Apply for disability as your doc suggested (he needs to fill out forms on your behalf) go to social services to see if they can help set you up in some kind of rental (I don't know where you live, as the process varies from state to state and province to province in Canada) but there is help out there for people that are sick, you just have to find and use all the available resources.

Don't feel guilty about anything, you're human and you're suffering, you don't need to add guilt on top of everything else, it just gets in the way.

(((HUGS)))
Posted 9/4/2013 6:10 PM (GMT 0)
Nex, we're all here in support of you and each other, and we're a group of people who know what you're going through. We may not have all the particulars the same, but at least we aren't going to be like the uninformed who will say oh just take this miracle herb and it will be all better.

For me, prednisone is a surefire way to two things: (1) remission (maybe not total, maybe not immediately, but the stupid medicine does work for me), and (2) insanity. Someone on here once said that she knew she was on prednisone when she found herself cleaning the baseboards in her kitchen with a toothbrush at 3 a.m. and crying. That sums it up for me. I have had to tell myself repeatedly not to make any permanent decisions while on prednisone, because when I wean off of it, things invariably look different. It's a miracle and a disaster. Xanax helps me but nothing is like getting off of it, when that's possible.

In the meantime, take advantage of these boards and consider getting a pillow that you designate "ulcerative colitis" and punch it when you get really mad at this disease.

At the same time, "loss of self" related to chronic illness is evidently well documented. I didn't know what it was called until I read a recent article in the New Yorker, and I did kind of think I was isolated in my experience of it. It makes me feel a little... better (?.. maybe just less lonely) to know that loss of self is common to many of us.

Here's one citation: http://tinyurl.com/mq95aoo
Posted 9/4/2013 7:03 PM (GMT 0)
You really need to seek some help. You may not like this but I think your best course of action is to have surgery, leave this disease in your past, and look forward to life without UC, working a real job. Just giving up and trying to get disability is, well, just giving up. You need to take your lemons and make lemonade with them. That's the secret to being happy. None of us were dealt a good set of cards but most of us have not just given up like you have. Lemonade actually tastes good. Just about everyone who has had surgery has gotten their lives back and their only regret is that they didn't do it much sooner, choosing to live a life of misery instead of drinking lemonade and enjoying life.
Posted 9/4/2013 7:10 PM (GMT 0)
So you're only on pred? What else have you tried?
Posted 9/4/2013 7:12 PM (GMT 0)
A lot of my moods lately are because of the prednisone. It's crazy how it changes your moods. It makes me very pessimistic, hence why I see the worst in everything while I am on it. It's not completely to blame, but it doesn't leave much light at the end of the tunnel where I'd have some otherwise.

Thanks for all your comments. I was just having a really low moment last night. The doctor forgot to send my prescription for prednisone to the drug store over the long weekend, so I had to drop off it for three days straight. After it left my system, I became very ill. I'm on day two of being back on it. I can still feel the side effects from those three days.

I'm going to try and be positive despite prednisone completely contradicting that. The frame of mind it leaves me in makes it very hard, though. I can't get around it. Anyone have any tips on what they do to distract themselves. I did a bunch of dishes by hand, and felt myself getting dizzy and cold flashes. It did help, though. I might try going for a walk, even though I am in pain.

I guess I came in to this forum in a pretty dramatic way. I don't know if I will stick around long. I am bad for that. Thanks everyone. We just have to keep pressing in through all the sht..
Posted 9/4/2013 7:19 PM (GMT 0)
I've tried hycorte enimas. They have worked in the past. This time around they didn't work. The doctor also have me something else. I forget what it is called. I was taking it, and started throwing up blood. I don't know if that was because I wasn't eating, but I noticed a lot of the pill seemed to be in the fluids. I went back to the hospital, and they gave me tree bags of suline solution(spelling). After that the doctor switched me to prednisone, which I have taken in the past, and the effectiveness varied, but it always made me feel better. I actually worked on prednisone sick as a dog. Probably shouldn't have, but that's life.. I'm been on the prednisone for three weeks now, and it brought the inflamation in my blood down a lot. The doctors said it is supposed to be at 15, and mine was at 200. Not sure what that means :-/
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