I'm absolutely tired of this

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NiceCupOfTea
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Date Joined Jan 2010
Total Posts : 9926
   Posted 8/10/2017 4:24 PM (GMT -6)   
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 My support is being withdrawn and I can't afford private therapy.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)


clo2014
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Date Joined Feb 2015
Total Posts : 678
   Posted 8/10/2017 4:33 PM (GMT -6)   
No...... You can do this. One step, one moment at a time.

I am right there by you. I too feel like you. We all do.

I am tired of getting my a55 handed to me on a daily basis. Having a disease no one knows what causes it, throwing meds at it hoping one sticks, and not having a cure. I am frustrated because people do not understand that I can't do the things I want-not that I won't, and that I want to go places and do things so badly and yet I am stuck...

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

Post Edited (clo2014) : 8/10/2017 4:36:19 PM (GMT-6)


NiceCupOfTea
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Date Joined Jan 2010
Total Posts : 9926
   Posted 8/10/2017 4:39 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.
Dx Crohn's in June 2000. (Yay skull)
Tried: 5-ASAs, azathioprine, 6MP, Remicade, methotrexate, Humira, diets.
1st surgery 20/2/13 - subtotal colectomy with end ileostomy.
2nd surgery 10/7/15 - ileorectal anastomosis. Stoma reversed and ileum connected to the rectum.
Current status: Chronic flare. Do I have any other kind?
Current meds: 50mg 6MP; Entyvio (started 3/11/16)

gumby44
Veteran Member


Date Joined Nov 2007
Total Posts : 4346
   Posted 8/10/2017 4:54 PM (GMT -6)   
Hey NCOT,
I recently completed a survey sent out by U of Chicago about quality of life and working with IBD. I got seriously depressed after completing the survey because it made me realize how much I actually struggle with on a daily basis. (and I'm supposed to be in remission!) I have a tendency to try my best to ignore it and push on, but the survey seemed to bring reality crashing down on me and I felt sadder than I had in months. My husband then pointed out the the survey didn't ask about all the good stuff that also happens each day.

I know I'm not as sick as you have been, and I won't even try to pretend that I understand or experience all that you struggle with in your life. But i do know that life has all sorts of twists and turns and good things might still be coming your way. Don't try to be happy. Instead just try to stay neutral and cope with each challenge without overanalyzing it. I hope you will reach out for help if you do end out feeling suicidal. But in the meantime, just push on. We'll all be here paddling along with you!

cupcakespinkgal
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Date Joined Jun 2010
Total Posts : 1529
   Posted 8/10/2017 5:12 PM (GMT -6)   
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.

NiceCupOfTea
Veteran Member


Date Joined Jan 2010
Total Posts : 9926
   Posted 8/10/2017 5:16 PM (GMT -6)   
Hey gumby.

I'm just getting a cup of tea then I'm gonna go to bed and try reading for a while. (Meant to make it herbal tea but made a cup of ordinary tea without realising it :-/ Oh well, I'm gonna take a sleeping pill tonight anyway.)

Your case reminds me of pb4, who I haven't seen in several months (I hope that's cos she's doing better). Humira, rather than surgery, got her into remission but she was still suffering badly with IBS. I know it brought her down and I'm not surprised. Diarrhoea, abdominal pain, fatigue, nausea etc. is still miserable, no matter what causes it.

Edit: Sorry cupscakepinkgal, I left my post open while I went to make a cup of tea <_<. Just seen your post now and am about to read it.

NiceCupOfTea
Veteran Member


Date Joined Jan 2010
Total Posts : 9926
   Posted 8/10/2017 5:26 PM (GMT -6)   
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.
Dx Crohn's in June 2000. (Yay skull)
Tried: 5-ASAs, azathioprine, 6MP, Remicade, methotrexate, Humira, diets.
1st surgery 20/2/13 - subtotal colectomy with end ileostomy.
2nd surgery 10/7/15 - ileorectal anastomosis. Stoma reversed and ileum connected to the rectum.
Current status: Chronic flare. Do I have any other kind?
Current meds: 50mg 6MP; Entyvio (started 3/11/16)

scifigal2k
Veteran Member


Date Joined May 2012
Total Posts : 3257
   Posted 8/10/2017 5:32 PM (GMT -6)   
I am so sorry NCOT. You're not the only one that has days, weeks, or months like that - you're not alone!
"For this thing I besought the Lord thrice that it depart from me. He said, My grace is sufficient for thee: for my strength is made perfect in weakness. Most gladly therefore will I rather glory in my infirmities; I take pleasure in infirmities, reproaches, necessities, persecutions, distresses, for when I am weak, then am I strong" 2 Cor

gumby44
Veteran Member


Date Joined Nov 2007
Total Posts : 4346
   Posted 8/10/2017 5:40 PM (GMT -6)   
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 smile
58 yr. old female, diagnosed with Crohn's in terminal ileum Sept-Oct. 2007. Dx. with c.difficile 1/12, 10/14, 11/15, 1/16. Fecal transplant on 2/24/16, and so far, no more c.diff!

5/20/14: Ileo-colic resection surgery after stricturing and partial bowel obstruction.
Not currently on any Crohn's meds and in remission, but struggling with bad IBS.

U B Tough
Veteran Member


Date Joined Aug 2015
Total Posts : 857
   Posted 8/10/2017 8:55 PM (GMT -6)   
Your words resonate with me, especially today, the 1 year fistula anniversary.

Crohns is a terminal disease. I've started looking into assisted suicide. Its possible get them here.
female, Canada

IVIG (on hold)


UC/Crohns - tested positive for MAP antibodies & mycobacterium
PG- remission
chronic perianal abscess and fistulas. Failed setons...it was pure torture.
started Stelara May 24, 2017. 100mg imuran

Hoping to start Anti-MAP drugs soon
Had a 10 week reprieve, now flaring...again. 4 years of flaring is tiresome.

U B Tough
Veteran Member


Date Joined Aug 2015
Total Posts : 857
   Posted 8/10/2017 8:59 PM (GMT -6)   
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.

gumby44
Veteran Member


Date Joined Nov 2007
Total Posts : 4346
   Posted 8/10/2017 10:16 PM (GMT -6)   
Crohn's is NOT a terminal disease; it is a chronic disease. There is a huge difference.
58 yr. old female, diagnosed with Crohn's in terminal ileum Sept-Oct. 2007. Dx. with c.difficile 1/12, 10/14, 11/15, 1/16. Fecal transplant on 2/24/16, and so far, no more c.diff!

5/20/14: Ileo-colic resection surgery after stricturing and partial bowel obstruction.
Not currently on any Crohn's meds and in remission, but struggling with bad IBS.

NiceCupOfTea
Veteran Member


Date Joined Jan 2010
Total Posts : 9926
   Posted 8/11/2017 5:18 AM (GMT -6)   
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.

gumby44
Veteran Member


Date Joined Nov 2007
Total Posts : 4346
   Posted 8/11/2017 6:17 AM (GMT -6)   
Thanks NCOT....I don't think I've ever had uveitis....just herpes in the eye, blepharitis and now this recent flashing stuff. But my eyes definitely feel like a weak spot and something seems to go wrong with them when I get run down. It's all exhausting! I haven't been good about consistently taking my B-12 and D.....I better get back to that as I feel like I'm walking into another downward spiral. Ugh!

I hope you have a better day today and the sun shines for you!!
58 yr. old female, diagnosed with Crohn's in terminal ileum Sept-Oct. 2007. Dx. with c.difficile 1/12, 10/14, 11/15, 1/16. Fecal transplant on 2/24/16, and so far, no more c.diff!

5/20/14: Ileo-colic resection surgery after stricturing and partial bowel obstruction.
Not currently on any Crohn's meds and in remission, but struggling with bad IBS.

NiceCupOfTea
Veteran Member


Date Joined Jan 2010
Total Posts : 9926
   Posted 8/11/2017 6:46 AM (GMT -6)   
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.
Dx Crohn's in June 2000. (Yay skull)
Tried: 5-ASAs, azathioprine, 6MP, Remicade, methotrexate, Humira, diets.
1st surgery 20/2/13 - subtotal colectomy with end ileostomy.
2nd surgery 10/7/15 - ileorectal anastomosis. Stoma reversed and ileum connected to the rectum.
Current status: Chronic flare. Do I have any other kind?
Current meds: 50mg 6MP; Entyvio (started 3/11/16)

U B Tough
Veteran Member


Date Joined Aug 2015
Total Posts : 857
   Posted 8/11/2017 7:13 AM (GMT -6)   
I hope I did not offend anyone by my comment. In MY case it is terminal. It's almost killed me twice, was palliative etc etc. Unless I drop dead from a heart attack this disease or some concomitant effect will kill me. (I do not want to detract from NCOT's post so perhaps we could start another thread if so inclined. )


I do not want to send you a long rambling post....I just want to say I feel the same. I understand. I have little support, a surgeon who doesn't believe me and no gyne help at all. Bowel problems since 16 but not officially diagnosed until 2000. So 17 years of utter hell. I get being depleted and hopeless. I'm sure you've read my posts on PTSD and depression. I've given up on the idea of returning to work or planning vacations. I set myself up for failure all the time by doing that. I just live day by day now (which is different for me). I'm trying not to beat myself up for not working, not being able to fulfill my dreams etc etc. It makes me feel worse. It's not my fault I got this disease; and it truly sucks that I have it. (we have it) Most days I count the minutes until night fall so I can sedate myself and sleep. I think my anti depressant takes the edge off but if my bowel/fistulas go haywire my PTSD is hard to control.

Can you take sleeping pills? Sleep truly helps.
Are there any free social services (therapy) through the hospital you can access?

NiceCupOfTea
Veteran Member


Date Joined Jan 2010
Total Posts : 9926
   Posted 8/11/2017 7:28 AM (GMT -6)   
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)


U B Tough
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Date Joined Aug 2015
Total Posts : 857
   Posted 8/11/2017 9:28 AM (GMT -6)   
I sent you a private message. Hope that's ok.
female, Canada

IVIG (on hold)


UC/Crohns - tested positive for MAP antibodies & mycobacterium
PG- remission
chronic perianal abscess and fistulas. Failed setons...it was pure torture.
started Stelara May 24, 2017. 100mg imuran

Hoping to start Anti-MAP drugs soon
Had a 10 week reprieve, now flaring...again. 4 years of flaring is tiresome.

clo2014
Veteran Member


Date Joined Feb 2015
Total Posts : 678
   Posted 8/11/2017 9:37 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
06/12-07/14 symptoms start, no diagnosis.12/14 diagnosed UC & diverticulitis. 01/15 hosp- fistulas, DX changed to Crohns, 02/15 developed new skin rashes, eye problems and painful joints 06/15 Hosp.2x again.. new specialist.Said was worse case he's seen. 7/16 hosp 5mm Stricture stricturplasty to 15 mm.09/16 colostomy. Meds: Remicade, methtrexate, prednison,folic acid, vit D, calcium, pro biotic,

NiceCupOfTea
Veteran Member


Date Joined Jan 2010
Total Posts : 9926
   Posted 8/11/2017 1:23 PM (GMT -6)   
I don't think they like me very much on the UC board.

Urgh, never mind.

Anyway... Yeah, UB, that's all right.

@Clo - Don't. I'm still thinking along those lines. I'll probably never do it, not at least while my parents (in particular my mum) is still alive. It wouldn't be fair to do that to them. But after they've gone, and if I've still got this wretched disease I will think about a 1-way ticket to Dignitas.

PS: I never mentioned it before because I thought it may have been helping to keep your Crohn's in check, but I think you ought to give up methotrexate. The side-effects sound horrendous. It's a pretty nasty drug: I wasn't as badly affected as you, but I didn't like it when I was on it.

Post Edited (NiceCupOfTea) : 8/11/2017 1:58:57 PM (GMT-6)


EruditePaul
Regular Member


Date Joined Jan 2006
Total Posts : 297
   Posted 8/11/2017 2:15 PM (GMT -6)   
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.

NiceCupOfTea
Veteran Member


Date Joined Jan 2010
Total Posts : 9926
   Posted 8/11/2017 2:37 PM (GMT -6)   
Thanks, Paul. Glad to hear you have had 23 relatively trouble-free years - that's a longer run than many people get on traditional meds, so you have done well. Although that said, I suspect you would have had much the same result if you hadn't taken anything :/

If you don't mind me asking, what alternative medicine do you take?

EruditePaul
Regular Member


Date Joined Jan 2006
Total Posts : 297
   Posted 8/11/2017 2:50 PM (GMT -6)   
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.

Debjgny
New Member


Date Joined Aug 2017
Total Posts : 4
   Posted 8/11/2017 4:23 PM (GMT -6)   
NCOT, I also have been where you are at. It seems like I have had Crohn's Disease all my life. I had no understanding from my husband and children. I couldn't make plans for that evening, because I couldn't predict how I would feel. I had to know where every bathroom was, and avoided family gatherings because me plus 20 other people and one bathroom just wouldn't work. Even though I have been in remission since 1987, I still have D because I only have about 8 inches of my Terminal Illeum left, and a steady trickle of Bile due to Gall Bladder removal. At my worst, I was tempted to give my family massive doses of laxatives so they could understand what I deal with every day. I quit taking maintenance drugs several years ago because I was sick and tired of being sick and tired!!! I have attempted suicide several times, and almost succeeded! I have also came close to dieing from Septic Shock from a Kidney Stone, Kidney Failure and Pneumonia. Today I had a severe run in with the Med Tech here at the Assisted Living Facility because I didn't feel up to taking my shower on HER schedule!! I felt like telling her that I haven't been able to follow ANY schedule for 40 years!!! I hope you can get everything under control...or as close as you can get. You Are Not Alone!

Debjgny
New Member


Date Joined Aug 2017
Total Posts : 4
   Posted 8/11/2017 4:28 PM (GMT -6)   
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!!!
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