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02-28-2012, 07:00 PM   #61
NoNameNoFace
 
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Great post, those emotons are described perfectly and I ask the same questions nearly every day. Days I will be depressed and loose hope. Days I will live in resentment and bitterness. Days I will pick myself up and stay postive.

But recently for me its been depression and resentment. My treatment of pred and aza has failed and my symptons are back. At height of my dose of pred I felt brilliant, was over Christmas luckily enough and I felt great which is all I could of asked for, funny I never thought I'd be greatful for feeling healthy as I always thought something like this would never happen to me, even as I type this the resentment is coming out.

But, I stay positive as the people on here have been really helpful and kept me upbeat as there is plenty of more options to get my remission.
05-30-2012, 05:40 PM   #62
fromthegut
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I don't know if I am grieing but I can tell you I am not feeling well. I put my cat to sleep and my neighbour moved out. I don't think I realised how much I appreciated her !! There are so many people who are my friends that have left the building. I miss the kids. When I am there I feel sick !! I think it means it is time to move on ? But where will I go ?? That is my fear .
07-08-2012, 11:35 AM   #63
Donkey
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Stay strong and have faith in God. That is what has kept me around.
07-15-2012, 01:11 PM   #64
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Thanks for posting I know that only too well. I went through them all mainly the depression one. I just hope I cope with this upcoming surgery I won't be like it again I don't want it. Nice to know that I'm not the only one that has gone through this xx
07-15-2012, 01:15 PM   #65
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Only I haven't accepted it I just live with it o.O still hate it but I wouldn't be here without it
08-03-2012, 02:29 PM   #66
Blazing saddle
 
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Jeffer I am new and just read your post. I am touched by your co
Comments and truly hope you are feeling better soon. I am not diagnosed but I know how miserable these symptoms are but to have Brest cancer as well I admire your courage and wish you well xxxxx
08-03-2012, 04:17 PM   #67
Jeffer
 
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Thank you formyou kind words. After 5 years since Sunday I have got rid of the dreadful lethargy. A week last Wednesday I had my first Inflximab infusion and it is beginning to kick in. I still get very tired but today did a six mile walk in the Yorkshire dales and whilst I am I a lot of pain at least I managed to get round. Here's hoping that after next Wednesday's infusion I should be much nearer normal.
08-03-2012, 04:38 PM   #68
CheerBear12
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Good luck hope it works big hugs it didn't work for me. But hope it does for you x
08-10-2012, 11:41 PM   #69
rwhnl
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i had depression and anxiety before my Dx and had experienced psychosocial trauma, so like... having Crohn's disease was not devastating for me... although I generally am in denial. I take care of myself and press forward, trying to live like any other healthy person.

People are often surprised to learn I have Crohn's, but I do try to hide it.

I never really get angry about it, and I often bargain with the disease (adjusting my lifestyle to make it go into remission) and when I am approaching a flareup, I have to accept it and get new treatment.

I think chronic illness has its own flow and may even deserve to have other names for the stages --- maybe to look more at the motivational model:
-precontemplation (i'm fine)
-contemplation (maybe there's something wrong with me / maybe i'm flaring up)
-preparation (ok, something is up. i'm scared, but let's make an appointment/alright, how do i deal with THIS flareup?)
-action (going to the doctor/starting the flareup plan)
-maintenance (maintaining the plan)
-relapse (plan fails or does not work... easily loops into pre-contemplation and then contemplation)

Just a thought This is the "process of change model"
08-11-2012, 01:40 AM   #70
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I did not realise how flat and lethargic I had become until after my first infusion of infliximab. Whilst as yet it has not improved the physical symptoms my mood has become much lighter and I actually look forward to doing things.
11-16-2012, 07:50 AM   #71
StaceyQ
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i love this post, so true. i am still in the depression stage and cant seem to snap out of it and feel so alone, My BF doesnt understand and i dont think he ever will.
11-23-2012, 06:46 AM   #72
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At the moment I seem to be going through them all each day which is not helping I know. Its because I thought after my op I thought I would get remmision but I now seem to be developing Crohns in my duodenum, stomach & well everywhere it seems even with meds.
I see all the post on here about all those children with this disease & see how lucky I am really to have been diagnosed later in life so then I feel bad for having a moan about my situation.
I am just trying to focus on Christmas just so I can have some good thoughts again.
I have my next gastroscopy on Thursday so maybe once that is done with I will settle down a bit & stop stressing out.
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02-24-2013, 09:57 PM   #73
Hope345
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As a mom, we go through all of those stages too...
It took about a year to get to acceptance. And some of the cycles do start all over again with each flare and all the other symptoms and medications that come into play with this disease.

thank-you for this thread....

Last edited by Hope345; 03-03-2013 at 12:05 PM.
03-03-2013, 06:07 AM   #74
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Well I have been very reflective these past few days which probably isn't a good thing! Hmmm, must be the Sarah effect . I don't know how many of you are familiar with the stages of grieving so I thought I would pop them in here.

They are generally used when someone has a terminal illness and since I work in palliative care I am very familiar with them, but are just as relevant to those with a chronic disease as well those who care for them. There are said to be 5 stages and although laid out neatly here people don't necessarily move through them in chronological order. It is common to move back and forth between stages and not everyone experiences all stages. I have copied and pasted the stages so look past the references to dying and more to definition itself...

Denial "I feel fine."; "This can't be happening, not to me."
Denial is usually only a temporary defense for the individual. This feeling is generally replaced with heightened awareness of possessions and individuals that will be left behind after death.

Anger "Why me? It's not fair!"; "How can this happen to me?"; '"Who is to blame?"
Once in the second stage, the individual recognizes that denial cannot continue. Because of anger, the person is very difficult to care for due to misplaced feelings of rage and envy.

Bargaining "I'll do anything for a few more years."; "I will give my life savings if..."
The third stage involves the hope that the individual can somehow postpone or delay death. Usually, the negotiation for an extended life is made with a higher power in exchange for a reformed lifestyle. Psychologically, the individual is saying, "I understand I will die, but if I could just do something to buy more time..."

Depression "I'm so sad, why bother with anything?"; "I'm going to die soon so whats the point... What's the point?"; "I miss my loved one, why go on?"
During the fourth stage, the dying person begins to understand the certainty of death. Because of this, the individual may become silent, refuse visitors and spend much of the time crying and grieving. This process allows the dying person to disconnect from things of love and affection. It is not recommended to attempt to cheer up an individual who is in this stage. It is an important time for grieving that must be processed.

Acceptance "It's going to be okay."; "I can't fight it, I may as well prepare for it."
In this last stage, the individual begins to come to terms with her/his mortality or that of a loved one.

I know with Sarah I moved through all 5 stages and did eventually come to an acceptance. It doesn't mean I like it any way, shape or form but I reached it nonetheless.

I had no denial with Matt and I think I am still moving between anger and bargaining. Acceptance isn't even on the radar!

I guess I felt the need to post this so that you could have a look and maybe see that a lot of the emotion you feel is normal, natural and just.

Dusty.
Really appreciate this post.

I have Crohn's disease and accepted it instantly. I went through months of extreme fatigue and completely humiliating 'urgent diarrhoea'. A couple of years on, fortunately those symptoms have almost completely gone, though I still suffer with many of the other typical symptoms.

I try to stay positive but sometimes I do get very upset to think that this disease, and all of the uncertainties that come with it, are forever.

I always feel almost guilty after going through a 'feeling sorry for myself' phase, and convince myself it could be so much worse, I just need to just get a grip.

Such a relief to hear it is normal to feel like this sometimes though!

A big thank you to you and all of the other posts on this thread for making me feel like I'm not just being silly!

Hannah.
03-04-2013, 04:50 PM   #75
pottydweller
 
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well well well. I am glad to have read this as I have been beating myself up over the fluctuation of my mental state . I can relate to the feelings that Slim has mentioned and am experiencing the same crap from my partner. Yes I understand that I am not at all fun at the moment and I am limited in the things I am able to do at this point in time but does that mean that the one who says they love you treats you like a virial infection and complain,( not always with words but by actions.) about all the things I used to be able to do. He will help and suport strangers but when I require support he is not avaliable.(emotionally or physically) Not talking about sex. I still like that. It's the only time my body feels good. I am confused and dont know what to do anymore. Its almost like Im being punished for aquiring an illness I had no choice in . I have gone through the bullet in the head thing and after much soul searching have realised I dont want to be dead I want to be able to live life to it's fullest and have this thing that prevents me from doing so. I went through major feelings of inadequacy but also came to the realisation that I am STRONG . I have had to be to get through this and still keep my spirits up.I Hope by sharing this I have helped someone.
03-11-2013, 10:02 AM   #76
723crossroads
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Hi, I am a Crohn's sufferer who just got the report that in the colonoscopy, nothing showed up. They want to do a pillcam now. Personally, I don't see the point right now as I am having other issues to deal with and tests. I can only handle one thing at a time, or I get all upset. If I were having D everyday and tons of pain, I would. But for me, right now have to get MRI for Kidney Dr. and chest xray and also bloodwork. Had kidney cancer in 2009. Had tumor removed and have been fine since but, still have to get these tests to make sure.
My husband has been so supportive thru the cancer and crohn's and all my pain from arthritis and fibromyalgia, etc.... He has alot of pain as well from doing alot of physical work. He has a herniated disc in his neck and several bulging in his lower back. He was with me thru my back surgery too way back in 1999 when I herniated a disc. I guess they have to go thru it before they can understand it. We support eachother. To me. When your man won't give you what you need emotionally, why bother? Sex is nothing to me compared to support!
He needs to be educated thru experience!God Bless! T

Last edited by 723crossroads; 03-15-2013 at 03:04 PM.
03-11-2013, 10:09 AM   #77
Kinsey
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Hi, I am a Crohn's sufferer who just got the report that in the colonoscopy, nothing showed up. They want to do a pillcam now. Personally, I don't see the point right now as I am having other issues to deal with and tests. I can only handle one thing at a time, or I get all upset. If I were having D everyday and tons of pain, I would. But for me, right now have to get MRI for Kidney Dr. and chest xray and also bloodwork. Had kidney cancer in 2009. Had tumor removed and have been fine since but, still have to get these tests to make sure.
My husband has been so supportive thru the cancer and crohn's and all my pain from arthritis etc.... He has alot of pain as well from doing alot of physical work. He has a herniated disc in his neck and several bulging in his lower back. He was with me thru my back surgery too way back in 1999 when I herniated a disc. I guess they have to go thru it before they can understand it. We support eachother. To me. When your man won't give you what you need emotionally, why bother? Sex is nothing to me compared to support!
He needs to be educated thru experience!God Bless! T
This is a great support forum, when I starting letting my grieving out is when I finally joined this group.

I too don't know what I'd do without my husband support! It means everything.
03-11-2013, 10:42 AM   #78
723crossroads
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I did not realise how flat and lethargic I had become until after my first infusion of infliximab. Whilst as yet it has not improved the physical symptoms my mood has become much lighter and I actually look forward to doing things.
It's easy to get caught up in the syndrome isn't it? One day you are out parasailing in Key West and the next, you are in the hospital with pains and D and noone knows why. Life is full of "not so good" surprises. But, that is when you do need your friends with you and your other half to support you if you have one. This means more than all the roses in Grandma's rosebed! Doesn't it?. So many out there suffering with noone to really talk to. That is why we have this wonderful forum. That is why we have each other! Blessings!
03-11-2013, 10:44 AM   #79
Jam300
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My denial stage lasted a good seven years, that's got to be a record! I'm currently fluctuating between the other four steps, gradually I notice that i'm more and more in the acceptance stage.

The key thing for me is to put the acceptance in perspective, a realistic picture of acceptance I suppose you could call it. As I said previously, i'm getting to acceptance more regularly and I assume it will eventually just become the norm, but at the minute all I seem to be able to accept is that I will eventually live an inhibited life. While i'm ok with that, I feel it's a bit negative!
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03-11-2013, 10:48 AM   #80
723crossroads
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My denial stage lasted a good seven years, that's got to be a record! I'm currently fluctuating between the other four steps, gradually I notice that i'm more and more in the acceptance stage.

The key thing for me is to put the acceptance in perspective, a realistic picture of acceptance I suppose you could call it. As I said previously, i'm getting to acceptance more regularly and I assume it will eventually just become the norm, but at the minute all I seem to be able to accept is that I will eventually live an inhibited life. While i'm ok with that, I feel it's a bit negative!
I so agree! I have never looked at it that way. I have always thought I will beat this thing! God gives me so much strength and hope when things get tough, I don't know how else I survived all I have been thru. So, never say never! This life is hard, yes! But, we don't have to give in to the negatives of it. I find helping others who are going thru things like this makes me feel 100% better and a much better attitude as to why we are here in the first place!Love conquers all!
03-11-2013, 10:59 AM   #81
Kinsey
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Roman 8:2, says it all!
03-11-2013, 11:07 AM   #82
723crossroads
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Excellent choice Kinsey!
03-15-2013, 03:07 PM   #83
723crossroads
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Well, now that we all agree that we will make it through, let's have a pity party without the pity! LOL!Hugs all around!!!
06-26-2013, 01:06 AM   #84
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This is a great discussion. So nice to see that people are able to have support and people to talk to. Really glad you posted this! The stages of grievance are definitely something that a lot of people don't know about (and if they don't, rather confusing emotional stages to deal with). Thank you for enlightening some of us, or helping to reaffirm those who did know's faith.
xoxo
Ally
06-28-2013, 05:27 PM   #85
DustyKat
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This is from a blog of a man that is terminally ill with Cancer:
http://deniswright.blogspot.com.au

Life lessons by Denis Wright:

1. Don't spend your life in a job you hate. Life is too short to live it only in the evening and at weekends.

2. If there's something bad happening in your life you genuinely have no control over, learn all you can about it and how to live with it. Beating your head against a brick wall is unproductive.

3. If you think you can change it, then go all out to do so. Try to understand its nature and work with it where you can.

4. There are no 'good' and 'bad' decisions. If you made what you think might have been a poor choice in life, learn from it, and you might make a better one next time. You don't know what's going to turn out good or bad in the long run, so regrets are a waste of time.

5. Don't agonise about the past, in the sense that you can't change it. Live in the slice of time that's the now. You can't live in the moment; it's too short. The slice is richer. It contains a little of past, present and future.

6. Apologise as soon as you can when you think you've hurt someone. Don't try to pretend you're perfect. Accept responsibility where it's due.

7. Keep your options open for as long as possible. Don't close them unnecessarily.

8. Try to keep your sense of humour if you can, though it's not always possible.

9. Carpe Diem ... Or, for a change, seize the day!

And there's one more.

10. Do not be afraid of death. "If you're not more afraid of your own death than you need to be, then you need have little fear for anything life can hand out."

I think many of the points he has made can be just as readily applied to someone with a Chronic disease or anyone for that matter. I know I see wisdom in them.

Dusty.
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06-29-2013, 12:32 AM   #86
Hope345
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Thanks again for posting dustyKat.
as a mother I too went through all of the stages. I can now see my daughter has made it to the depression stage.... she is actually in remission, but she is very depressed. It helped to read it again, because I know acceptance is right around the corner.
IBD takes them away from what is a normal childhood or life and they must come to the point of acceptance themselves. I can not do it for her, just as I could not take the pain or the disease away from her. She is a strong girl and will get to that point. Her dad and I love her so much but she still feels very alone with all that she has been through. Unfortunately she is not one to reach out to others about it yet, but I pray she will when the time is right for her.

All of the people on this site are amazing caring people and I have found you all to be so supportive.
My heart goes out to all of you as you deal with this disease and learn to live with it.

Last edited by Hope345; 09-19-2013 at 09:16 AM.
06-29-2013, 12:44 AM   #87
DustyKat
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With such wonderful and supportive parent's I have no doubt your daughter will find her way Julie. I hope the path for her is not a difficult one and it happens sooner rather than later, bless her.

Dusty. xxx
06-29-2013, 05:57 AM   #88
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1. Don't spend your life in a job you hate. Life is too short to live it only in the evening and at weekends.

So many of the rules of life change when one has children! Your happiness is no longer job one. You do what's best for them. That's parenthood I don't hate my job but it's hard, hot, dirty work. I'm well compensated and my benefits, particularly my insurance, are well above average. I could live w/o the money and paid leave but not the insurance!! My bro-in-law had a job that provided well for his children. His daughter was dxed with jv diabetes. Well, the poor guy just hated the job so he quit, with no possible way to replace the insurance since now his daughter had a pre-existing condition. He is a poor excuse of a father, man, human being!! A man does what a man's gotta do

I realize the author was dying of cancer but that thinking when applied to the whole is a recipe for irresponsibility. If one's goal in life is to sit in the park and paint abstract landscapes or study medieval literature...that's great!!! Good luck making your way and I hope you do but you do not have the right to be compensated by the tax paying public for your choices! I'm sorry Nancy Pelosi but ya don't!!!

I like no. 5 better. My job is not my life! My family is my life! That's the richer slice

Sorry for the rant now I'm
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06-29-2013, 06:11 AM   #89
DustyKat
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Wow Dex, that hit a nerve!

I don't think he is saying that you leave a job and do sweet FA but rather, if possible, find a job you love.

I see and hear loud and clear what you are saying about your BIL and yes that is irresponsible and selfish in many respects, particularly when you live in a society where a job is very much your means of access to health care.

Dusty.
06-29-2013, 11:16 AM   #90
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It really makes me aware of how lucky life has treated me. A job a loved for 95 % of the time and a retirement without any money or insurance worries. The NHS is not perfect but at least we have paid over the years and cost has no bearing of our health needs.
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