I feel cheated.

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

Teclo
New Member


Date Joined Aug 2008
Total Posts : 5
   Posted 10/16/2008 9:38 PM (GMT -7)   
This is nothing but a rant, I know:
 
I have been reading posts here for a while, but I have never posted myself.
 
It has been maybe, 7 years? since I was diagnosed. I am 31 now, and I still cannot believe it.
 
I am tired of the blinding pain upon waking up every other day. I am tired of trying to have some relationship with girls, yet dreading the notion of taking them out for a simple dinner.
 
I have been on many things. Prednisone (It made me nuts), something called MP-5, or 6, I do not remember, Asacol, and Endocort. Now I only take Colazal, about 9 pills a day.
 
I want to ask my doctor for painkillers, but I feel he will just see me as some ****junkie who is looking for some good drugs.
 
Yes, I am drunk right now. I know it will make things worse in the morning, but I no longer care. If I am going to suffer anyway, I might as well throw caution to the wind I figure.
 
No one I know has any understanding of what this is like. I try to hide it because I am embarrased. I am tired of saying "I ate at home" when I am with friends, yet very hungry.
 
Okay, I am done writing. Good night.

spookyh
Veteran Member


Date Joined Oct 2008
Total Posts : 1342
   Posted 10/16/2008 9:56 PM (GMT -7)   
I understand where you're coming from. Crohn's has blindsided me more times than I care to remember. I'm 33, still haven't graduated from college, have never been in much of a relationship, and live with my parents. I'm lucky in that I've been pretty much pain free since August. I'm going to start a new diet soon (the SC diet), and am in hopes it might get me well enough to return to school, once again.

It wouldn't hurt to ask your doctor for some painkillers. No doctor ever offered me any until a year ago, and during bad times, they've been the only thing that probably kept me going. Have you ever been on Remicade or Humira? If not, they're definitely worth looking into.

I hope things look up for you! Life sucks when it's full of pain.

pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20576
   Posted 10/16/2008 10:00 PM (GMT -7)   
I hear ya, I'm sure we all do...I've been cheated for 17 yrs straight with no full remission ever...it's everything you've described and more....vent away, that's why we are all here, to lean on for support when we're really down because of this stupid disease.

(((HUGS)))

:)
My bum is broken....there's a big crack down the middle of it! LOL :)


Teclo
New Member


Date Joined Aug 2008
Total Posts : 5
   Posted 10/16/2008 10:01 PM (GMT -7)   
I have never been on Remicade or Humira. What is the "SC" diet. Do you have a link to it?

Teclo
New Member


Date Joined Aug 2008
Total Posts : 5
   Posted 10/16/2008 10:04 PM (GMT -7)   
...And thank you, just knowing there are others out there who understand all the things that come with this has really lifted spi***. 

Joie1
Regular Member


Date Joined Oct 2008
Total Posts : 376
   Posted 10/16/2008 10:04 PM (GMT -7)   
Hey buddy, more power to you. I know the feeling. I'm eating my fingers (literally) from biting in screams from the constant pain. From waking (with it being the alarm clock most mornings) through the day and night. I went to the ER finally last month. I had problems breathing (it ended up being an asthma attack). I decided to tell the doc about the pain and I swear he never touched my back. He gave me muscle relaxers that sort of tickle at the pain without doing squat. I can't take Max. Strength Tylenol (I damaged my liver through my own stupidity as a teen) and I can't take aspirin or ibuprofen bc everything says its bad for the CD. And when I asked that stupid doc to make it stop, he never bothered to see my back or hips. Never experienced a doc who wouldn't see what was hurting before. I hate being made to feel as if I were a junkie when I am trying to make a some kind of living to pay back all the debts and every move screams through my joint while my stomach feels as though its eating itself.

I would say that being drunk isn't the best idea. The stuff I read on CD said alcohol could make it painful. Sorry, I mean, be mad buddy. I just figure...at some point, my body will be used to this constant pain. I mean, it has to right...'cause a body can get used to pain meds...so it should get used to pain.
27/f/CD. 4 CD related surgeries: 2 resections, 2 JP drains, 3 NG tubes, many absesses (including the one my most recent surgery scraped off my ovary) and fistulas.
Currently trying to figure out hip and knee joint pain.
Have lost in these surgeries: appendix, 8 in. intestine, R fallopian tube, gallbladder, 10 in. intestine
Dx'd: February 2007.
Pentasa (and much mental screaming)


Keeper
Veteran Member


Date Joined Jun 2008
Total Posts : 1058
   Posted 10/16/2008 10:09 PM (GMT -7)   
I hope you can accept this in the spirit it is intended - I hear your pain and would like to help. This DD will not just go away and leave you alone. You are the only one who can do what is needed to deal with it. First, you should get straight with your friends about it - let them know you have it and why you can't eat or drink what they're having. If you try to spit in this disease's face, it'll just bite you back. Go to your doctor and get better meds - or try one of the diet/supplement plans that are being talked about on these posts. If you leave it the way it is, it will just cause another problem - abscesses/fistulas/fissures requiring resections and other surgery, gallstones, pancreatitis, kidney stones/failure, migraines, arthritis, lupus, esophagitis and a bunch of others that are merely annoying. Yes it can get worse. Yes, you can do something to avoid that fate. Welcome to HealingWell!

Teclo
New Member


Date Joined Aug 2008
Total Posts : 5
   Posted 10/16/2008 10:12 PM (GMT -7)   

Yes, sometimes when it is really bad, the bones in my legs feel hollow and aching. It is very odd.

I go to bed now, I am glad I posted. Thank you all!


Keeper
Veteran Member


Date Joined Jun 2008
Total Posts : 1058
   Posted 10/16/2008 10:17 PM (GMT -7)   
Links for diet healingwell
SCD Diet page here
Intro to SCD SCD

spookyh
Veteran Member


Date Joined Oct 2008
Total Posts : 1342
   Posted 10/16/2008 10:24 PM (GMT -7)   
Here are the links to the 2 threads that got me interested in the SC diet. At first, I wasn't sure I'd have the fortitude to give up some of my favorite foods for such a restricted diet. But after thinking about, I figured it's at least worth a shot.

http://www.healingwell.com/community/default.aspx?f=17&m=1262312

http://www.healingwell.com/community/default.aspx?f=17&m=1264857

When I was in school, I never told my friends I had Crohn's until after the first time I had to drop out. Since then, it's gotten easier to talk about. I've even met 3 other people at my local dog park that have it. More than likely, at least one of your friends will know of someone who has it.

I've gone through periods where I just lose hope and give up on ever accomplishing any of my dreams. It gets tiring to be disappointed every time Crohn's rears it's ugly head and wrecks your plans. I kind of just try to hold onto hope that they'll come up with better treatments as time goes on.

gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 10/17/2008 5:24 AM (GMT -7)   
Hi There are lots of other meds and pred. makes us all nutty at times. Imuran has helped lots of people ,asacol, and many tohers . You are not alone here and we all try hard to help each other. I went threw a bad time of it too and thought things were not going to get better but they did. Have you a GI you see. Where is your crohn's located? Don't keep all this to yourself and we are here to help. Sometimes getting some suggestions on things can help .Sometimes we have a small area that causes us pain and surgery is needed .You need to tell your Dr. that things aren't going so good and you need better meds .Find out what you can about what is going on with you it gives a person a place to start helping themselves. lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,and still alive.lol gail


MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 10/17/2008 6:09 AM (GMT -7)   
It sounds like you haven't tried the more recent and advanced drugs. What I figured out was that I was getting no relief from pills cause they just did not stay in my body long enough. So I get injections of MTX. Pred is a steriod, so it can cause steriod induced psychosis. Please do not give up there are things that you can still try.
Forum Co-moderator - Crohn's Disease
...I will find a way, or make one. -Philip Sidney 1554-1586
Make sure your suffering has meaning...
All suggestions/options/opinions are caveated with please consult with your local health care provider...


keepingthefaith
Regular Member


Date Joined Aug 2006
Total Posts : 331
   Posted 10/19/2008 5:24 PM (GMT -7)   
I have had CD for 25+ years & I still do not accept it.  Probably thats my problem, I feel I will wake up one day & it will be gone!  Guess I'm just fooling myself.  The vicious cycle is too much at times & it kills me that I will never be strong physically & mentally like I once was.  I'm now 45 & everything on my "to do list" ends me in pain, fatigue & surgeries, depression/anxiety.  I don't understand why I can't accept myself & go on?  I don't enjoy life anymore & if it wasn't for my wonderful husband & family, well, really could care less if it were my time to go.  I just want to be happy with what I've been dealt & it is a struggle every second.  Yes, I see a therapist weekly now for 1 1/2 years, it helps. Bless you all!

Dx with CD 1987, 3 colon resections, 3 rectal abcess sx, anterior cervical neck fusion with plate & screws,6/2008. Major depression/anxiety, kidney stones & sx to remove, now 45 yrs old.  Still trying to figure out this disease & all the little extra complications that come with this rollarcoaster of a life with CD. Meds:Humira 40mg every other wk, Imuran .75 daily, welchol 625 x 3 daily, cymbalta 60 mg daily, fish oil, vit e,folic acid,Vit B12,inject monthly, Oscal w/Vit D, vicodin 4-5 daily 5/325,xanex .5 daily
 
         
 
 


gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 10/19/2008 5:49 PM (GMT -7)   
Hi Telco how 's it been going ? Kind of missing you so hope you"ll drop us a line. lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,and still alive.lol gail


Celey
Veteran Member


Date Joined May 2007
Total Posts : 1284
   Posted 10/19/2008 11:40 PM (GMT -7)   
I think everyone here knows how you feel, Teclo... Sometimes, it really seems like this disease is robbing us of our life, of what we want to do and see, but can't because we're so limited...

But as some others said, there's still other things for you to try...

And also, you need to try to keep your spirits up. You can't let this disease beat you. I know it's hard... *This disease put me in a stress center one time*

That's always an option, too... If you ever feel so cheated by this disease, and you start thinking some... bad thoughts... Don't be afraid to seek help.
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.


Teclo
New Member


Date Joined Aug 2008
Total Posts : 5
   Posted 10/24/2008 3:03 AM (GMT -7)   
Thank you all for your words of encouragement and understanding. It has meant a great deal to me. It is the old standby, you know: "misery loves company". Not that I am glad at all that any of you have this thing to deal with, I would not wish this on anyone... but it is good to know that people out there understand.
 
Most of you will probably see what I say as a complete bummer, and I am sorry, but is it how I honestly feel. It's like...I dont know. Most people with a chronic disease, there is some timeline or something, know what I mean?
 
Not that I want to die, but sometimes I cannot help thinking: Why couldnt this just be terminal, you know? Let some doctor give me a timeline as if it were cancer, and then I could just throw caution to the wind, spend my savings and have a few laughs. I may not be getting this across right, I am not sure.
 
On that note, are there any old people with this? What can I expect in terms of life expectancy? I can feel that the human body is not meant to take such a strenuous toll on a daily basis.
 
I know that I should know all this by now, but honestly, I have volunteered to keep myself in ignorance about a great many things. When I do research on it online, within 5 minutes I feel like I want to throw my computer out the window and then pass out. Call it a web-induced panic attack I guess.
 
Thank you for your time.

gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 10/24/2008 5:40 AM (GMT -7)   
Hi Telco Sometimes we have all felt defeated but that's part of dealing with crohn's .What would you like to know ? Sometimes it is a bit hard to find the answers but I have learned alot here and the first thing I would like to say that the strength comes from within we would all like to forget about it at times but I try to deal with it. Perhaps your trying to learn to much at one time or finding it hard to get the answers your looking for. Hope this helps you .Yes there are old people here that have managed for years and have had good lives not the best but good. lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,and still alive.lol gail

New Topic Post Reply Printable Version
Forum Information
Currently it is Wednesday, December 07, 2016 3:20 PM (GMT -7)
There are a total of 2,734,290 posts in 301,200 threads.
View Active Threads


Who's Online
This forum has 151323 registered members. Please welcome our newest member, judy.
409 Guest(s), 14 Registered Member(s) are currently online.  Details
Wdan, Psilociraptor, Rikky1, tennisplayer, Bohemond, Tick41, Girlie, Lymiemomster, smlafleur, exqualls, peanut307, lavendar, Blu's Mama, trumpet123


Follow HealingWell.com on Facebook  Follow HealingWell.com on Twitter  Follow HealingWell.com on Pinterest
Advertisement
Advertisement

©1996-2016 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer