I'm absolutely tired of this

I'm worn out. I don't want to deal with this for another 40 or 50 years. Nobody who doesn't have Crohn's understands what it's like. Even people with UC don't really understand what it's like because for them there is always a get-out clause: surgery. For them UC is only chronic up to the point they have surgery. For me Crohn's is chronic up until the day I die.

Who actually feels the same way or is it literally just me on the whole of HW? 'Cos I dunno how long I can keep this sh!t up for. I struggle to find reason to keep on living as it is. And no I'm not gonna go and kill myself, at least not today or tomorrow. But my quality of life is literally zero right now. I can't sleep. If I do sleep, I have bad dreams. My support is being withdrawn and I can't afford private therapy. I just can't see the point. There's no light at the end of the tunnel.

Post Edited (NiceCupOfTea) : 8/10/2017 4:33:04 PM (GMT-6)

For me a moment isn't enough - I don't think a year would be enough :/

A few weeks ago I filled out some quality of life questionnaires for my hospital. I guess I was still just about managing to keep afloat but now I've completely collapsed and my answers would be completely different. I can't cope.

I totally get it. And I've had times during my disease that I feel like that.

Right before my final surgery I remember thinking as they wheeled me back, if this surgery doesn't improve things I hope I die in surgery. I wasn't suicidal and wouldn't have taken my own life but did feel that beat down by Crohns and a lifetime of it.

I also have the same moments lately when my liver reminds me it is sick now too. I finally got my Crohns in 100% remission but now I have a rare liver disease with no treatment!

Sorry rant over, point is I get it.

I've become a very day by day person. Sometimes I think my family finds it disturbing but I find am happier and don't go to the dark place when I don't think about the future at all.

I hope you have some better days soon NCOT.

Yeah, I've had those sort of thoughts about surgery. In fact if I have a third surgery and revert to having a permanent stoma, I'll probably have them again.

I'm sorry about your liver; if it's PSC that sucks. Me, I'm having a lot of problem with inflammation in my eyes - it keeps on returning. I'm dealing with it at the moment and it's a right nuisance. I'm gonna use the last of my steroid eye drops and defer the moment I have to return to the eye department at hospital for as long as possible.

I should try and live more day to day. Like, just try and not think - or worry - about the future at all.

about the eyes....
I had the weirdest thing happen two weeks ago. I was in Chicago visiting my dad. I had a long day traveling and also had terrible diarrhea that day and was pretty exhausted. It was about 11 PM and I suddenly got terrible lights flashing in my left eye. It felt like I had been staring at a ceiling fan for a long time. Even when I closed my eyes it wouldn't stop. I was a little worried about retinal detachment, but I didn't want to disturb my family and make a big fuss, so I took a Xanax and went to sleep. I woke up the next morning with a migraine (and more D) that lasted all day, but the eye stuff stopped. My brother is an ER doc, and he thinks it was a precursor to my migraine. I've never had anything like it before!

Anyway, I also get eye pain and swelling when I am very tired along with blepharitis at times. My docs don't seem to relate it to Crohn's but I sometimes wonder!

BTW, I just got off the phone with my GI doc. I'm back to having pretty severe D again. The last time I took Vanco even with a negative stool test and it helped for about a month, but then the symptoms slowly came back. We're going to try Vanco again for two weeks and see what happens. It does really seem like a bacterial infection.....very foul smelling explosive D, and I'm barely eating anything. (not to be too graphic) Anyway, the saga continues.........just keeping you company in misery if it helps at all

clo2014 said...
No...... You can do this. One step, one moment at a time

Sometimes I just need that moment....

One moment to accept the unacceptable
One moment to be weak
One moment to whine
One moment to regroup
One moment to find my strength and courage
And one more moment before I start to survive and fight this awful disease......
Moment by moment

Hang in there....

Clo

Wow! Clo, this truly is beautiful. Thank you. I picture myself doing this with deep breathing.

Hi folks. Well, with the aid of a sleeping pill I got some sleep at least.

Gumby - Your brother is probably right. I get light sensititivity (mind I have that most of the time nowadays...) before a migraine but I've never had any flashing lights or an aura. As for your other eye problems it could be related to the Crohn's. Do you ever get red, painful eyes? If so, get that checked out with an opthalmologist ASAP. It could be uveitis and that would almost certainly be related to your Crohn's.

I hope the vanco helps.

Also what you said!

Crohn's is NOT a terminal disease; it is a chronic disease. There is a huge difference.

Terminal diseases have death as an end-point; chronic diseases don't. People live a normal lifespan with a chronic disease, unless something else gets them first. The chronic disease may make you feel like you wish it was terminal, but that's another issue.

The sun is shining but it's not cheering me up.

I just feel absolutely hopeless. That lunatic, Trump, is ramping it up yet again with North Korea, putting the whole world at risk. This is what happens when the world has nuclear weapons: they're all right when sane people are in charge, but what happens when the madmen take over?

On the positive side, I'm now less worried about the clusterfudge that is Brexit.

On a personal and global level, I literally have no hope left.

Well I've had toxic megacolon and that's a life-threatening complication if not diagnosed and treated. I've had an anaphylactic reaction to IV iron (felt a pain in my chest and passed out 30 seconds later - I woke up on the floor to find doctors and nurses around me). Life-threatening complications are not the same as having a disease where there is a 99.9% certainty you will die from it, e.g. terminal cancer which has spread throughout the body.

Look up the mortality rates for Crohn's and UC; they're normal or as close to normal as can possibly be.

No I can't take sleeping pills. My GP prescribed me 4 yesterday; she wouldn't prescribe me any more than that as she thought I was a suicide risk. Even if she hadn't, I doubt she would have prescribed more than 7 - most UK GPs act like sleeping pills are more addictive than heroin.

Absolutely nothing. My GI referred me to the hospital's psychology team. Nothing happened. After a year I got a phone call from a woman from the hospital apologetically explaining that as over 12 months had elapsed I would have to be re-referred. She asked if I would like to do that; I said, no, don't bother, there's no point, I'd only be waiting another year. We amicably agreed to drop me from the waiting list. That happened about a year ago.

Post Edited (NiceCupOfTea) : 8/11/2017 7:33:54 AM (GMT-6)

Oh NCOT....my heart goes out to you. I absolutely hate it when I can't even enjoy a sunny day...or when a sunny day does nothing for me.

I promise I know how you feel. I have even looked into Oregon because they have assisted death there. I then think about my family and realize how hurtful it would be for them if I should insist on that route. (Although after I take my methotrexate, my head practically turns all the way around and I start spewing my negativity....well they might just throw me in the car and drive me up there that day!...cause even I don't like that person)

Sometimes it is hard even to hold onto that moment..and you just start freefalling into the abyss.... The abyss (for me) doesn't have a measure or unit for time or for pain. Once you are there those measurements cease to have meaning.... The pain is just overwhelming, indescribable, (regardless of how many adjectives used) and unrelenting. Sometimes you claw your way back up and are so very surprised by how much time has or has not passed. Its a hard place to be....and so for me I use the one moment to get me by....but I have to admit there are days that I say forget it cause it just isn't working....

Gumpy, I have discovered that if my vitamin D is low I have more eye problems.... I am not saying it gets rid of uveitis but that I seem to have fewer onsets of it... But maybe thats psychosomatic?

UB- Thank you. I wrote that to explain to my family what I was thinking when I said...I just need a moment. Those are the steps I take....and I too take deep breathes and repeat it to myself like a mantra...and somehow it helps me fight thru it.

Clo

Sorry to hear you are not well. NCOT, you are a very informed and educated patient, in my mind. 23 years ago, I chose alternative medicine, and to this date, I have managed my disease with a fair quality of life, definitely not miserable, though I do not know what will come tomorrow. I do not regret choosing alternative medicine even if my Chron's blows up tomorrow because I have lived 23 years without too much trouble. I know many people would not believe.

NCOT, I kind of know you were going to say I had a mild form of Chron's. No, that is not the case. When I was diagnosed 23 years ago, I had severely progressing diarrhea and abdominal pain, to the point that I had to quit my job (a good job) and even thinking about ending my life. Believe me, it was bad and getting worse every week. Then I chose traditional Chinese medicine (not acupuncture), which consisted of very potent Chinese herbs, carefully selected by one of the very best Chinese doctors, not the one you'd meet in your Chinatown neighborhood. Many people would not believe me. But what can I say? Chinese have relied on natural herbs for thousands of years and have written so many books and passed on through generations.

Oh yes, you all probably feel like blowing up the television when a Diarrhea medicine commercial comes on!!! I'm thinking...you live with Diarrhea for 40 years, and then you can complain about how bad you feel!!!