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I hate this, just need to vent..

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Crohn's Disease
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Posted 4/7/2009 12:23 AM (GMT 0)
I am sick of this crap, i never have a good day or just an okey day there is always something bothering me.
I have the flu, I have D or C, joint pain, eye pain, abdominal pain, headache, the list goes on and on. ..
I am also sick of having my toilet look like a slaughter house with all the blood, i have been bleeding none stop fresh blood since October.

I am so so sick of this never getting a day off. I am feeling really bad for myself today because i always think things are getting better but they never do..

I don't need any advice just to tell someone how i feel :)
Posted 4/7/2009 12:30 AM (GMT 0)
:(... Sorry you're feeling so bad Isergodur... You have talked to your GI doctor about the blood, right?
Posted 4/7/2009 12:38 AM (GMT 0)
Isergodur, you have come to the best place to vent as we all completely understand what you are going thru. Sending healing thoughts and prayers your way. I agree with Celey, I hope you have contacted your GI about all your symptoms.

Hugs
Gail *Nanners*
Posted 4/7/2009 12:39 AM (GMT 0)
(((big hugs)))
Posted 4/7/2009 12:45 AM (GMT 0)

Celey said...
:(... Sorry you're feeling so bad Isergodur... You have talked to your GI doctor about the blood, right?

Thanks :)

He knows and we have been monitoring my blood level for a long time and i get regular iron infusions.
We have also tried lots of things to make it stop but its always there :S

I would have to say that the blood is having the most affect on my mental health because you cant see crohn's unless you have blood in you stools or D.
If i did not have that i would not see anything that reminds me of how sick i am..
Of course i would still feel the pain but i think thats different..

I never consider my self unlucky for getting crohn's it has thought me a lot and i am happy for not having cancer or heart condition or something worse. But that does not mean that i don't hate this :)

I am now on disability and i love it at the moment because i can just concentrate 100% on getting better, but i cant wait to go back to school or work and living my life. with out being sick.. Hope that day comes soon..
Posted 4/7/2009 1:08 AM (GMT 0)
I'm so sorry...those are the worst days I swear...I don't know what to say about the blood because it just seems like it won't stop for anything sometimes. I really hope you get better soon...
Posted 4/7/2009 3:14 AM (GMT 0)
Vent all you want!!! Just don't give up and don't give in....So much enduring courage and bravery in the face of challenge here to learn from. I heard once, "When you get to the end of your rope, tie a knot and hang on!! This is such an up and down disease that hey, you could be to an up part any day!! In my prayers you go. Hugs
Posted 4/7/2009 3:22 AM (GMT 0)
I hope you feel better soon! This disease can be really hard to live with some days... I'm freshly diagnosed, like you, started meds about 2 months ago.. and it looks like I'm starting to flare again, even though my last one wasn't in remission. Can be so frustrating! I'm like you though, I was so worried that I may have had cancer when I was getting diagnosed, so by the time they told me I had Crohn's, I was really just grateful to be alive. But still, some days can be really hard, can't they?
Posted 4/7/2009 3:46 AM (GMT 0)
Hope you have a better day tomorrow. Glad you can share with all of us.

Jennifer
Posted 4/7/2009 4:13 AM (GMT 0)

Valerie3 said...
I hope you feel better soon! This disease can be really hard to live with some days... I'm freshly diagnosed, like you, started meds about 2 months ago.. and it looks like I'm starting to flare again, even though my last one wasn't in remission. Can be so frustrating! I'm like you though, I was so worried that I may have had cancer when I was getting diagnosed, so by the time they told me I had Crohn's, I was really just grateful to be alive. But still, some days can be really hard, can't they?

Yes some days are just so hard i want to cry..
But somehow i always make it :)

This is just not what you hope to be dealing with when you are 24..

Hope they will find a cure four us..
Posted 4/7/2009 7:09 AM (GMT 0)
It sounds to me as if we need to declare today International Be Kind to Isergodur Day.

Really, I do this whenever I start to feel that I can't do life anymore, and it really does help.

* if you have an engagement today and you know it won't give you joy, and it is something you can get out of, then cancel it. (in other words, keep medical appointments and other important things, but postpone that visit to Aunty Ingrid if you know she's just going to make you feel more miserable).
* put on the happiest, perkiest music you can. If that doesn't work, make today a theme day, e.g. Disco Day, 80s Day, 90s Day, whatever. If you don't have happy music at home, then treat yourself to a new cd if you can afford one, or start taping happy songs off the radio.
* have a bubble bath
* watch happy movies
* do anything else that is fun: sit outside and blow bubbles, play with a baby or a kitten, whatever

Try it, and I reckon there's a pretty good chance that before too long you'll be feeling a little happier. It won't make your gut symptoms go away, but at least it might restore a little joy to your life for a little while.

Will you check in tomorrow and tell us how you're feeling?

Hang in there,

Ivy.
Posted 4/8/2009 1:59 AM (GMT 0)

ivy6 said...
It sounds to me as if we need to declare today International Be Kind to Isergodur Day.

Really, I do this whenever I start to feel that I can't do life anymore, and it really does help.

* if you have an engagement today and you know it won't give you joy, and it is something you can get out of, then cancel it. (in other words, keep medical appointments and other important things, but postpone that visit to Aunty Ingrid if you know she's just going to make you feel more miserable).
* put on the happiest, perkiest music you can. If that doesn't work, make today a theme day, e.g. Disco Day, 80s Day, 90s Day, whatever. If you don't have happy music at home, then treat yourself to a new cd if you can afford one, or start taping happy songs off the radio.
* have a bubble bath
* watch happy movies
* do anything else that is fun: sit outside and blow bubbles, play with a baby or a kitten, whatever

Try it, and I reckon there's a pretty good chance that before too long you'll be feeling a little happier. It won't make your gut symptoms go away, but at least it might restore a little joy to your life for a little while.

Will you check in tomorrow and tell us how you're feeling?

Hang in there,

Ivy.

Thanks this is good list :)

I will try it tomorrow, I am lucky because my sister just got this adorable little puppy :)
So I can start the day by playing with her, then i think i will bake a cake which i love(but can't eat).
I think this depression of mine is because of Remicade i am having my next infusion on 16th of april and i am so scared I have not felt any great result and i think it is not working for me and I am afraid of whats next :(
Before i got sick i was this happy girl who did not let anything stop her. And now well now i don't do much except walk my dogs if i can between toilet trips.

I have even started taking strong pain pills just to get away from all of this (not to harm myself, but just to get a little brake).

Hope you are all feeling a lot better then me, and i know some times are hard and this will pass and i will feel wonderful hopefully soon :)
Just it is hard to keep the faith if you don't seen any change in 6 months :S



'
Posted 4/8/2009 2:19 AM (GMT 0)
Of course it is hard. We understand. It sounds as if you have a good plan there: how lovely to be able to start the day with a puppy!

When you said that you're taking the pain pills to get away from it all, what did you mean? Did you need a break from the physical pain, or are you taking the pills for some mental and emotional relief?

Ivy.
Posted 4/8/2009 2:33 AM (GMT 0)

ivy6 said...
Of course it is hard. We understand. It sounds as if you have a good plan there: how lovely to be able to start the day with a puppy!

When you said that you're taking the pain pills to get away from it all, what did you mean? Did you need a break from the physical pain, or are you taking the pills for some mental and emotional relief?

Ivy.

I need a break from the physical pain :( and I am not a big fan of painkillers but i feel like i can't handle the pain as well when my emotional side is in a big mess.
I am not going to do anything stupid, promise. I just feel like i need stronger meds for the pain when i am feeling down like i need to get away from the pain, if you know what i mean.. Get a break from crohn's.
Posted 4/8/2009 2:40 AM (GMT 0)
I think I know what you mean. I try not to take the strong stuff myself, but I know that when I get teary and emotional I have pushed the stoicism too far, and I need to take some stronger meds. It helps, I get a break, and then I feel happier.

Is that what you mean?
Posted 4/8/2009 2:50 AM (GMT 0)

ivy6 said...
I think I know what you mean. I try not to take the strong stuff myself, but I know that when I get teary and emotional I have pushed the stoicism too far, and I need to take some stronger meds. It helps, I get a break, and then I feel happier.

Is that what you mean?

Yes, exactly what I mean :)
I know you are not supposed to use pain meds like that but i cant help it. It feels so nice just to float around in your own little bubble with out the pain.

I am going to call my doc tomorrow and see if he can't cheer me up hehe..
Posted 4/8/2009 3:06 AM (GMT 0)
Sorry, why not? If the pain is so bad that you can't stand it and it's wearing down your emotional resources, why shouldn't you take a pain med then?

Somebody? Nobody has ever given me guidelines on *how* to take meds; I've only been told to take them more than I do, instead of sticking it out, in pain.

Ivy.
Posted 4/8/2009 9:48 AM (GMT 0)
yeah Sometimes pain is psychological ! And needs relief none the less for all that. wink
Posted 4/8/2009 6:36 PM (GMT 0)
I'm perfectly content with being able to get pain pills when I'm in physical pain... That's all I need 'em for. (I have had trouble with that, in the past, though... Doctors too afraid I'll get addicted to them)...

Psychological pain is what anti-depressants are for...
Posted 4/8/2009 11:58 PM (GMT 0)
yeah What I was actually thinking Celey was, the psychological effects of pain tend to be vastly underrated in their importance - after all, if we can ignore it, do we think it matters ? - but if the pain does not go, then neither will the psychological fallout. Antidepressants to cope with having a lousy day don't compare to pain relief medication entailing not having a lousy day in the first place, in my opinion. ( nono And I hazard a guess that anyone who says otherwise is having a fine healthy day, although I am open to persuasion... eyes)
I can see why narcotics can be so habit forming though. I spent the whole day today just hurting with a bad back, felt like a cat on hot bricks, and frankly if I knew of something that would remove it I would have had no inhibitions in taking it. And feeling that much better could get addictive pretty fast if your physiology or psychology (is there a difference ?) tends that way.
Posted 4/9/2009 12:18 AM (GMT 0)
Goodness, I didn't say I was usiing painkillers to make myself happier. What I said was, that I try not to take them, but there comes a point when I know that the pain is severe because I start getting teary and irritable, and that's when I know that I have been stoic for too long.

From WebMD: Pain can lead to other problems, such as: Fatigue, which can cause impatience and a loss of motivation; Other mood changes, such as hopelessness, fear, irritability, anxiety, and stress.

From FamilyResource.com's discussion on chronic pain: Mood is affected with fractiousness, irritability, and depression.

I'm not taking the pills to cheer myself up; I'm taking the pills because the emotional fallout suggests (to me) that the pain has been too bad for too long.

No habit-forming habits here. As I said, I've been told to take them more than I do, and stop being stoic...

Ivy.
Posted 4/9/2009 12:22 AM (GMT 0)
Anyway, Isergodur, just finishing my thought above, my feeling is that if you're taking the pain pills for the reasons above, then that *might* be ok (but I am open to debate on that topic). If you're taking them so you get a nice fuzzy head and don't need to think about your problems for a while, then I think you may be heading down a dangerous path, and it is time to talk to your doctor about other coping methods and treatment options. There is no shame in this: I think doctors underestimate just how mentally and emotionally taxing a painful and isolating disease like Crohn's can be.

Hang in there.
Posted 4/9/2009 12:58 AM (GMT 0)
Is there anyway you can volunteer a few hours a week at a school or assisted living or nursing home?Helping others can do wonders for your ego and self esteem as well as helping others. Make it flexible so if you aren't feeling well you can cancel. It gives you a sense of selfworth and reminds you that you can still contibute and make a difference. It always works for me, even if it is for an hour.

Elizabeth
Posted 4/9/2009 1:59 AM (GMT 0)
Thanks you guys you are the best :)

painkillers are a sensitive subject it think. I never want to take them but sometimes I just cant live with the pain anymore and need some help from my good friends the pain meds.

My doc is always telling me to take more pain pills but I like to be tough and just live with the pain. But sometimes I just cant especially when I am feeling blue.

It is not just the pain pills I don't like, I dislike all meds.

Before i got sick i was going to visit sick people with one of my dogs for the Red Cross, but that required to much commitment. I had to make an appointment in advance and you know crohnies have a hard time doing that.

But i have been helping at the local sport club during events and that makes me so happy and needed..
I have been working for over 10 years and it is strange to not have anything to do so that helps a lot.
Posted 4/9/2009 2:25 AM (GMT 0)
Yes, I find that volunteer organisations have a very hard time understanding and accomodating the very special needs of their Crohn's volunteers.
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