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Crohn's Disease Forum » Support Forum » Mental Health Support » I don't want to do this anymore


01-11-2017, 04:45 AM   #1
Ozboz
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I don't want to do this anymore

So I'm struggling I'm 34 years old my bones are shot I have a stoma I live with my parent's and everyone around me has settled into life by now married have children and have money they travel.
While I rot in my house I can't do this anymore I honestly don't want to live anymore how much crap can one person take so early on in life.
I was on humira and it started working then I decided to stop it cause it made me tired and crappy after the shots but my bowels and mood were good then something got in my head to stop it and my doctor was a complete idiot instead of encouraging me to stay on it when it was working he said no problem I'll stop your script.

It's like I have a dark cloud over me that just doesn't want me to get better or something I'm over it
01-11-2017, 04:55 AM   #2
Cross-stitch gal
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I just want to send you a whole bunch of hugs ozboz. Wish I could do more than that, and hope you can finally find something that works for you all around....
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Ulcerative Colitis/IBD 1996, Iritis 2001, Ulcerative Proctitis 2013, Indeterminate Colitis 2016, Remission 2017, Hand Eczema

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01-11-2017, 06:15 AM   #3
valleysangel92
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I'm so sorry to hear you are struggling so much, I think if we're honest with ourselves we all have times where we wonder how much more of the rubbish this disease hands out we can deal with.

Has your doctor discussed any alternative treatments with you or has he just left you to deal with things the way they are? If not, you need to ask him for an alternative treatment, Humira is not the end of the line and there could still be something out there that's right for you.

In terms of how you're feeling, is this a new thing for you? It's totally understandable to have days where you're not sure how you're going to cope with it all and like everything is getting on top of you, but if its an every day feeling then it could be useful to seek some extra support like some counselling to help you process and deal with these emotions and set you back on the right path.

Chronic illness is a mean beast, most healthy people cant imagine even a month of being ill every day, never mind a life time, so try not to measure yourself against the people around you. I know that's difficult because I struggle with it myself, I often feel that I should be keeping up with my peers and progressing at the same pace as them, but to be honest that's unrealistic and unfair to myself. We are battling something that most people wouldn't last more than a few days with themselves. We are stronger than those people will ever really know, and every day we get out of bed and get ourselves dressed is a minor victory. It's not easy I know, but please try not to be so hard on yourself, you never asked for all this nonsense, none of us did, it isn't your fault that you've had it so much tougher than most.

I truly hope tomorrow is a brighter day for you. Take it one day at a time, try to be kind to yourself. You climb a mountain one step at a time, not in a giant leap. You can do this. One day at a time.

Remember you can come and let off steam here as often as you like, no one here will judge you for struggling as we have all been in this position at one point or another. My inbox is always open if you feel you would like someone to talk to one on one. Keep us posted on how you are doing.
__________________


Nicola
coeliac disease/Osteopenia /Crohns/Arthritis/
laperoscopic hemicolectomy 25/06/ 2013

Meds- Vedolizumab, sulfasalazine, Lansoprazole, Vitamin D, prochlorperazine, Oramorph, MST, B12 shots My journey with crohns: http://glutenfreecookiemonster.wordpress.com/

Allergic to - inflectra, aza

Non CD meds - Gabapentin, paracetamol, ventolin
01-11-2017, 07:36 AM   #4
Jabee
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My heart goes out to you, Ozboz. First, are you seeing a therapist/psychiatrist? I was referred to a wonderful psychiatrist almost a decade ago when things were really bad for me, and he has helped me immensely. Second, never compare yourself to others around you. We all put our best face forward and no one's life is without its hardships, even if they aren't immediately evident. Third, the hardest and most productive thing I have ever done is to forgive myself for the things that have gone badly in my life. I know this sounds trite, but I have held myself accountable for things that haven't worked out regardless of how hard I was working to make them succeed, and that is foolish. You stopped a medication because of its side effects, with the approval of your physician. Rather than add on to that statement, let it sit for a minute. Your physician did not offer you any alternatives to Humira, or list the downside of stopping it. I'm not suggesting you blame your physician, but please stop blaming yourself. If a medication is too difficult to take because of its side effects, then alternatives to as well as consequences of discontinuing the medication must be discussed. When things are really bad, I try to find something which offers comfort: a favorite book or film/tv show, for example. I know there are times when nothing works. And that's when you need to be extra kind to yourself. Make a list of a couple of simple things to do for the day (like eat a healthy meal and take a nap) then cross them off so you have accomplished something for the day. I know this may sound foolish, but when we're ill it's all too easy to think we are worthless. You are doing the very best you can under extremely difficult circumstances; go easy on yourself.
01-11-2017, 04:37 PM   #5
CeeCeeGo
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Hiya Ozboz
Not much to say that hasn't already been said above other than hang in there. It is hard living with this disease but as Valleyangel said every day is an achievement.
I have struggled with this disease for the last 4 years and it took a lot of soul searching and support from my health practitioners and friends/family to help me to start thinking differently about my life. I am sure you will get there - just do it at a pace that you are comfortable with.
My thoughts and hugs are with you.
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DX - June 2012 with mild/moderate Crohns. In July 2012 bowel perforated unexpectedly and needed emergency surgery.
Current meds/supplements - Budesonide (reducing dose over 3 months), B12 injections (every 10 wks), Vit D tabs 800iu x daily, Ferrous Sulphate 200mg every day, Folic Acid once a week
Previous meds - Allergic to Azathioprine, 6MP, Pentasa & Asacol, Methotrexate injections (didn't work). Stopped Humira after 2 years due to ineffectiveness.
01-11-2017, 07:51 PM   #6
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I think that a chronic disease will always cause us to struggle. I remember being in hospital, vomiting up the unmentionable for weeks because of a blockage and thinking that I cannot go on any longer.

I thought that I was going to die. I knew that it would be a long time before I would recover if I could see a way through. But we are stronger than we ever know and the fact that you are here is testament to that. You are strong. Give yourself credit and accept that things will take time, but slowly you will get there

In terms of other people's lives, yes they appear to have things better, but quite often, when you get to talk to people you will find that most people have problems. Give yourself time and credit. Be patience, there is always sunshine after rain.

Last edited by Red Rabbit; 01-12-2017 at 01:47 AM.
01-11-2017, 08:36 PM   #7
teeny5
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Message me if you want to talk or just vent. Don't give up...many of us can relate and are here to help any way we can.
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Previous meds: Sulfasalazine, Asacol, Rowasa, Pentasa, Entocort.


"Adopt the pace of nature: her secret is patience. -Ralph Waldo Emerson"
01-11-2017, 11:39 PM   #8
ronroush7
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Amen
01-12-2017, 03:41 AM   #9
Ozboz
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Well I had another head [email protected]%K today excuse the language but need this.
I was feeling poorly around the end of september last year and went and had bloodwork done anyway the GI said nothing bout my bloods and then the GP said I was anemic and that was it today I went for a review and he tells me I was low on folic acid back then and no one told me till todat WTF seriously it's like the universe is screwing with me or something. Also went for a review with my collateral surgeon and she turns around after pushing me towards a transverse colostomy and says maybe I didn't need it so what I had major surgery for nothing and now have a smelly stome half way up my abdomen for no reason.

Like honestly I wanna throw a few bombs into these peoples offices or something. And on top of that they screwed with my meds that were actually starting to work now I just want to slash my wrists and stop the mental anguish it's worse than the crohn's
01-12-2017, 08:07 AM   #10
ronroush7
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Everyone here is for you.

01-12-2017, 02:50 PM   #11
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Ozboz,

I want you to seriously know that you are not alone. I am 36 and get down about the exact same things you mentioned. Everyone seems to have a family and yet we still keep existing, right? I iliterally could have written most of what you said during several moments.

Talking about it helps. This forum is wonderful.
I know you don't know me but you can message me anytime just so you know that you are not alone and I get it. I think a lot of us here get it.

My name is Maggie and I am also sending you are virtual hug. Please reach out.

Are you in the UK? I am in Texas.

Keep your head up! Hugs!
01-12-2017, 02:53 PM   #12
Lizzie
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You must be having a terrible time and I can well understand why you are so fed up with the way you've been treated by the medical profession in addition to the burden of this very unpleasant disease. Depression is awful and any attempt at advice probably comes across as trite when you are feeling so low, but honestly, most of us have been there and the only way to cope is to take a day at a time, do things, however small, to make yourself feel a tiny bit better, even if it's just reading a book or watching an interesting film on TV. I know that sounds very inadequate, but if you don't take these tiny steps life just stays unbearable.
01-12-2017, 05:51 PM   #13
Ozboz
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Ozboz,

I want you to seriously know that you are not alone. I am 36 and get down about the exact same things you mentioned. Everyone seems to have a family and yet we still keep existing, right? I iliterally could have written most of what you said during several moments.

Talking about it helps. This forum is wonderful.
I know you don't know me but you can message me anytime just so you know that you are not alone and I get it. I think a lot of us here get it.

My name is Maggie and I am also sending you are virtual hug. Please reach out.

Are you in the UK? I am in Texas.

Keep your head up! Hugs!
Thank you darling makes me feel so much better hugging you back.
01-12-2017, 07:25 PM   #14
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Thank you darling makes me feel so much better hugging you back.
Of course. One day you will be there for someone going through what you are and that is what is so great about the support group. Be kind to yourself.

Maggie. (Hugs)
01-28-2017, 05:50 PM   #15
Ozboz
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I hope I die from all this soon I hope I die as soon as possible from some complication.
01-28-2017, 06:14 PM   #16
ronroush7
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I hope I die from all this soon I hope I die as soon as possible from some complication.
Everyone here is for you. Feel free to reach out.
01-28-2017, 11:57 PM   #17
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Hi Ozboz,

I, like so many people on this site, understand your frustrations. I just posted my own thread about desperately needing help, but something about yours struck a chord with me. It can be incredibly disheartening to see all of your peers carrying on with their lives and creating families, succeeding in careers, etc, while you're at home feeling sick. This is a hard life to live, and some days it feels like it's only getting harder, but there is always a silver lining.

My mother told me something when I was first diagnosed that still keeps me going during the truly bad days. You were given this disease for a reason. You were given this disease because you have the physical and mental strength to persevere through it, even if you don't always feel like you do. You are so much stronger than you know. And the great thing is Humira isn't like other medications like Remicade. You can restart Humira without building antibodies. Why don't you visit your GI and ask to start it again?

It might not hurt to seek counseling as well. It's incredibly common for the chronically sick to feel depressed. I personally see a counselor regularly and take medication to help with the sicky depression, as I call it. And there's nothing wrong with that.

You've found an incredible group of people suffering from the same disease you are, who you can call on at any time, day or night. It's all about baby steps with this disease. If I can offer any assistance please let me know. I hope you don't ever feel alone in this.
__________________
Diagnosed March 1, 2012 with Crohn's Disease, Uveitus,and possibly Behcet's.

Current meds:
Humira 2x Monthly

Failed meds:
Entocort
Asacol
Pred Forte
Durezol
Bentyl
Remicade
Cimzia
01-29-2017, 03:09 AM   #18
Cross-stitch gal
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I hope I die from all this soon I hope I die as soon as possible from some complication.
I'm still here for you and am continuing to send hugs your way!!!
01-31-2017, 12:32 AM   #19
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Ozboz are you currently going to therapy for depression and anxiety? If not I highly recommend it. Even just talking about it with someone other than family or friends can be really helpful. There may be therapists in your area that deal specifically with people who suffer from a chronic illness. For me even going to a therapy session gave me something to look forward to. I didn't start taking therapy seriously until I was 17 after I attempted suicide. I was forced into therapy when I was first diagnosed at a young age so I mostly screwed around and didn't go anymore once I was in my late teens. That therapist I was seeing clearly wasn't a good fit for me and was even the mother of one of the girls I went to school with. I should have switched to someone more appropriate but back then I didn't know that was possible. I know I scared my parents and I know they were glad I was ok. I had to stay in a psych ward for a while then at another hospital to be watched over still but with less restrictions. I lost hope back then but I also didn't have this kind of support system either. I've made many friends on the forum and I know that they're here for me anytime I need them. We have each other's phone numbers and talk on social media all the time. Any one of us would be willing to talk to you anytime.
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Diagnosis: Crohn's in 1991 at age 9
Surgeries: 1 Small Bowel Resection in 1999; Central IV in 1991-92
Meds for CD: 6MP 50mg
Things I take: Tenormin 25mg (PVCs and Tachycardia), Junel, Tylenol 3, Omeprazole 20mg 2/day, Klonopin 1mg 2/day (anxiety), Restoril 15mg (insomnia), Claritin 20mg
Currently in: REMISSION Thought it was a flare but it's just scar tissue from my resection. Dealing with a stricture. Remission from my resection, 17 years and counting.
02-08-2017, 06:34 PM   #20
cmack
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OZboz,

I don't have a stoma because I refused. Had I had one it might have given me more freedom. I wouldn't want a stoma either but sometimes they are very successful at letting the bottom end heal correctly. I really feel for you buddy There are a lot of us stuck living with cranky parents. I am right there with you. None of us want to lose you as a friend forever. A lot of people like you whether you know it or not. You are a very tough fellow for making it this far. You had the courage to have the ostomy, hopefully it is temporary. If not I can tell you that one of the nicest most successful and hard working guys in my town has a pouch. Permanent.(Strong guy too) He is able to do pretty much whatever he wants. You would never even know anything was different about him sitting right next to the guy. He is as tough as nails and so are you bro. Keep fighting and it WILL get better. Therapy is also a great idea as nobody much understands unless you are in that same pair of shoes.

Your buddy,

cmack
02-09-2017, 06:04 AM   #21
Ozboz
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See i think I became a few years ago but somepeople in my family stick to there own agenda saying i live for me blah blah but at the same time were supportive i think i became depressed a few years ago and then the anxiety kicked in aswell not anxiety to go out but towards meds scans procedures etc. then i really let myself go diet was horrible i think i wad unconsciously wad treating my depression with crap food and drink also started looking for other GI problems totally forgetting i had crohns in the first place now I think I should of picked it up ages ago


02-10-2017, 03:13 PM   #22
cmack
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Hey OZ,

How are you making out buddy? I hope you are OK. Give me a shout.

cmack
02-11-2017, 03:16 AM   #23
Ozboz
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Yeah all good cmack had to get a tooth out so just been sleeping all day otherwise I'm ok
02-11-2017, 11:09 AM   #24
cmack
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OZ

Take care buddy.Try to eat healthier if you can it seems like you aren't eating very well. It's true that you get out what you put in. Hope the tooth or lack of doesn't hurt too much. Have a rest and give us a shout later.

cmack
03-18-2017, 10:44 AM   #25
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Hi All

This is one of the most saddening threads I have read (and I have read a lot)
It highlights just what little people WORLDWIDE know and understand about Crohn's and only shows me yet more evidence just how much more Must be done to help not only fight, but to beat this bitch.

Keep strong Oz, you've already seen how many people are in your corner, and you can count me as another one
03-27-2017, 01:56 AM   #26
tots
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I am sorry, truly sorry your having such a hard time. Please know you are not alone. I know the above posts have already said it, I just don't think you can hear it enough. At some point most of us have felt the same way in different degrees. Tis is a very lonely and isolating disease. Outside of this forum, I am thinking few of us personally know someone with this disease. So nobody around us can really get it. Even our Drs have a hard time getting it. Thankfully, because this forum reaches all the way around the world- someone is
always logged on and I am willing to bet, ready to talk! Personally a month ago I got a puppy because I just needed that warm heartbeat that does not judge and is aways willing to cuddle! 2 am no problem. Even at 10 weeks old- Charli- knew I was sick and just laid her back against mine and stayed there until I got up. Not sure if something like that is an option for you, I just know its really helping me.

You will be in my thoughts and prayers!!

Lauren
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Diagnosed= 1992 and again Feb 2012 Confirmed with
CT enterography May 2015 !!


Waiting for the ok from my Ins company to restart Remicade. Will also start Imuron to get into remission!
I know it's out there somewhere and I WILL find it!


:


Ok, my family Dr told me to cut down on the stress- a husband, 3 kids, and 3 dogs!
10-17-2017, 08:36 PM   #27
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I live with my parent's and everyone around me has settled into life by now married have children and have money they travel.
Well you know, the grass is not always greener on the other side.

My favorite saying is:

When life throws lemons at you......learn to make lemonade.

Most people have to deal with something. Even those people married with children or traveling. Many people have to deal with things much worse.

You may not be living the life you envisaged, but you are living and need to make the best of things. So you need to find things that make you happy and then do them.

Does not have to be anything earth shattering either. Just simple things that fill your heart with a speck of joy.

For me: that is spending time in nature, watching the sun rise and set, walking along the beach on a sunny day, drinking a nice glass of wine, and sleeping in a hammock.

Could you perhaps do a little trip? Borrow some money off your parents and go somewhere? Or join a local group and meet new people? Or engage in a debating club online? Or volunteer at a local animal shelter? Or visit elderly people in hospital (bet they feel just as bad as you do, and could do with some company), or go on a date with someone?

Anything really, just need something to focus on and draw yourself out of the depression you feel.

I know this post is old. But I think 99% of people with a chronic disease feel the same way on occasion. So an important question to address.

10-18-2017, 10:34 AM   #28
Bufford
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Often its the small things that make the biggest difference in our lives. I'm retired and never accomplished the things I wanted to do when I was young due to this Crohn's, but I made the best of it and foundnd that life in the slow lane offers many good things. There is nothing wrong with stopping to smell the roses, for life is very short indeed. If one can accept life as it is with these health conditions, then the greatest hurdle to life has been overcome.
10-18-2017, 04:49 PM   #29
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If one can accept life as it is with these health conditions, then the greatest hurdle to life has been overcome.
Never were wiser words spoken



That is the aim

It really is all about attitude

You can either drown in your sorrows, or make the best of a bad situation.

Life is short - I know which one I would rather do.

Having a chronic illness is like the five stages of grief:

Denial
Anger
Depression
Bargaining
Acceptance

I have now reached acceptance and my life is a whole lot better for it.

In a way, I am lucky to have this disease now and not 20 years ago. Because at least now (if I cannot leave the house) I am not isolated - I can join groups all over the internet.

The secret is to find that silver lining on the cloud (no matter how small) and run with it

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