Grieving.

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DustyKat

DustyKat

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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 :lol:. 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! :lol:

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. :heart:
 
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Thanks for posting i have certainly gone through/going through everything you have mentioned apart the Acceptance i cant seem to get to this stage and i m getting really down again as i have been ill for a whole year, i thought i was getting somewhere this month starting the modulen then ended up at Hospital last couple of days and they think it has spread to my large bowel. When is it going to get better, i know you have to try stay strong but its sooo difficult :(
 
I think it will be difficult to reach this stage when you haven't achieved remission so don't be hard on yourself hun. :hug:

This is what is difficult with chronic illness as opposed to a terminal illness. With a terminal illness of course the outcome is finite but with a chronic illness the future course of your disease is unknown.

Most may well eventually go through to acceptance after their initial diagnosis and first remission but the grieving is often revisited again with each set back and flare. Perhaps not as long lasting and intense as the first time but grieving nonetheless.

Dusty. xxx
 
I went through that cycle when I was first diagnosed. And spent a lot of time in depression. Then when it flared back up last year after 6 years of remission, the stages started all over again. I'm back to acceptance again, but I think I'll probably cycle through the stages with every flare.
 
I think I am a little backwards. When I was diagnosed, I immediately accepted it, even with a smile on my face. Now I'm facing the depression. What's wrong with me? Is it weird that I'm backwards?
 
No hun you aren't weird!

Maybe it was acceptance straight up but maybe just maybe it was relief that you finally had a name for all that was happening to you and not really acceptance after all. Even denial can sometimes appear to be acceptance when deep down it isn't.

When you think back to your diagnosis do you think it may have been one of those?

Dusty. xxx
 
I think I have gone through all the stages. I was quite content thinking I had reached the "acceptance". But...for some reason, I have jumped straight back to Anger ! I can't figure out why though...I just don't get it. Gab is so happy and doing so well.
I'm weird too I guess...unfortunately, the "anger" just cost me my job of 5 years this week. Never once had I ever been so much as verbally reprimanded for ANYTHING at my place of employment...the "perfect" employee per say. Then my boss really upset me and I let him know it, in front of the entire staff ! OOPS ! He told the owner of the business (who really didn't want to fire me at all !!) that it was either fire me or he was quitting!
I think I need to move back to acceptance ! LOL
Ayiyiy..I really don't understand all of these crazy emotions, but I do know that right now they are revolving around Gab's illness, but WHY ?? Why when she's doing so so well?
Ahhh...so sorry for the rant...this thread just touched me !
:)
 
Oh hell T! I'm so sorry to hear about work...:hug:

You're not alone hun in feeling the way you do, I feel it too.

I don't know, when your child is sick you can account for the way you feel, their struggles are in your face and you understand why you feel the way you do but when they well and the emotions hit it is far more confronting and confusing.

I have thought about why I get pissed off when my children are wonderfully well and I think it's because deep down I know they are never going to be truly "healthy". I feel angry that they can never take the good times for granted, that at any time the fun, laughter and ability to do whatever their heart desires can be snatched away from them in heart beat.

I think them being healthy just rams home to us how fleeting it all may be and how very unfair it all is.

Dusty. xxx
 
I have thought about why I get pissed off when my children are wonderfully well and I think it's because deep down I know they are never going to be truly "healthy". I feel angry that they can never take the good times for granted, that at any time the fun, laughter and ability to do whatever their heart desires can be snatched away from them in heart beat.
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I think honestly that may be my problem...
I watch her be so happy and healthy and then I start thinking ...this f***ng disease is going to take it all away ! And then I can't help but wonder .. when??

I know I should take advantage of the good times, and I really truly try to..I do.
That's why I just don't get why my emotions are getting the best of me.

However, I have always been the type that when adversity rears its ugly head I am cool, calm and collected. Then, when it's over...that's when it always hits me out of the blue; when things are settled and smooth sailing!
So maybe thats it...maybe I'm just starting the "grieving process" now, since she has left for college and is thriving. It is my personal pattern after all...
Ahh hell...who knows ! LOL
 
I think you are taking advantage of the good times T, it's in the quiet times that the thoughts come to the fore. Now that Gabs has moved away you have more time to think and you have the added worry of not being able to see her for yourself and judge how she is going.

When our kids are ill we have very little time to do anything but deal with the here and now let alone grieve. It's only when the dust settles that we have time to take stock of things.

Dusty. xxx
 
DustyKat said:
No hun you aren't weird!

Maybe it was acceptance straight up but maybe just maybe it was relief that you finally had a name for all that was happening to you and not really acceptance after all. Even denial can sometimes appear to be acceptance when deep down it isn't.

When you think back to your diagnosis do you think it may have been one of those?

Dusty. xxx
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You're exactly right. Where did you get so much wisdom? I am so grateful for it... and your kindness. You are an absolute Godsend! :hug:

And T, I am so sorry for your situation. I hope and pray that you can sort things out very quickly. You are a wonderful, caring person. I'm sure you'll find something soon. Hang in there, honey!
 
I think I'm backwards like Jessi, lol. Started with a sort of reluctant acceptance having been I
ill for months prior to diagnosis. Have worked back through the stages cos it hasn't disappeared like magic with meds etc. I think I still skip and slip about the stages like on stepping stones at the mo.
But Crohns has taught me that I took a lot of things for granted, including my health. And there are some very sick people on my ward, and I had a shopping spree yesterday.
 
I realized early on that I was moving through the stages of grief when EJ was dxed. I had reached acceptance with the crohns when we were slammed with the PSC dx. That really made my head spin!! I was reduced to a whimpering child for a few days. I don't think I've allowed myself the luxury of denial but I bounce around anger, depression and acceptance like a pinball!
 
Like Dusty said, these stages aren't "linear" and no one goes through them in a straight line. I know I have gone through all of them over and over and over and back and forth and upside down.......

I, too, had reached acceptance for quite a long time after I got married. It was like I was settled, so my body was settled - for a bit. Now I just bounce between anger and depression - and a little bit of hope thrown in there for good measure.

This particular theory of greiving that Dusty has mentioned was theorized by Elizabeth Kubler Ross (if anyone is interested in looking her up or actually reading her book). There are other theorists out there, but their theories still follow the same basic pattern.

Great thread, Dusty! :) :)
 
I was diagnosed with breast cancer and crohns within a week of each other last September. The cancer I accepted and had a double mastectomy but cannot come to terms with the tiredness and lethargy associated with active crohns. The only time I felt well was the last of each three week cycle of chemo. No doubt time will help but after a year I really feel fed up and would like my life back.
 
Thanks for the great post DustyKat!
And hello to you too Jessi, I just want to make a comment about how I felt I was a bit "backwards" when I first found out my bf had Crohn's. It was something I accepted for a long time, but as I found out more and more about Crohn's, I have definitely shifted in between all the phases. Ie. It wasn't so much I said "why me?" but rather I was asking "why him? Why anyone?"

I've been through a bit of denial, a lot of anger, some bargaining, etc in no logical chronological order. And yet throughout all this time, he has seemed to be in the "acceptance" phase. And yet I feel so bad for thinking of these things (ie. anger) when I have a cakewalk compared to the pain he has to go through at times.

Maybe there is something wrong with me...haha...
 
Nah, nothing wrong with you hun. :)

So many wise and wonderful people here have often said it is harder for their loved ones than it is for them to deal with IBD.

I can't bear to see or think of my children having this disease, it is just so heart breaking...I well imagine that is the same way you feel about your bf...I think they call it love. :wink:

Dusty. xxx
 
I'm stuck in the anger stage because my GI is stuck in denial.

Amazing how they can say, "maybe you have some rare cancer" yet are reluctant to say that Crohn's is likely the cause (they are so afraid to give me any medication/treatment).
 
I'm sorry to hear that Keona. My friend was diagnosed (not with Crohn's but Diabetes). She had to go to another doctor to get the diagnosis. Her original family doctor kept saying it was nothing and basically giving her no treatment, even after she said repeatedly Diabetes runs in her family. This went on for years. Finally she switched doctors, did a couple of tests, and guess what it was? :(

Needless to say she was angry for a long long time.

Hugs to you, hope things get better somehow.
 
What a good discussion.

I felt like I was greiveing when my son was first diagnosed, and I guess I didn't give myself the permission to allow myself to do that fully. I suppose I didn't accept it would be normal for a parent to grieve. I've definitely been through some of the stages you mentioned.

I wonder if I'll go back through them each time there is a bad flare up. Over the last year, I have spent some time worrying that I won't cope every time he gets sick. I guess I will cope, but perhaps I need to be open to the idea I will probably feel some grief/ anger etc each time he is really sick. And not be surprised if I feel like that.

I has been really useful for me to think about this and perhaps expect that some of the emotions will keep coming and going.

thanks,
Lily Rose
 
My partner and I have been planning/talking of trying to have a baby next year and I am really struggling to come to terms with the possibility that I may pass on my Crohn's disease. It's one thing for me to deal with this disease but the thought that my babies might have to go through what I am just seems too much.

So just from a hypothetical situation I thinks it would be harder for the support person than it happening to me.

I recently had some surgery done and over heard my mum say to my doctor that she wish she could take my place and go through all this instead of me. It broke my heart that she thought that. I was so consumed with what was going on with me that I didn't even think that it might be upsetting to my mum (she acts so strong in front of me - always telling me I'll be fine).

So it really does impact EVERYONE.

So stay strong but for those "support" family and friends don't be afraid to let us know how your feeling too.
 
@Wendy...Oh man, just what you don't need...doctor denial...:hug:

@Lily Rose...I think I revisit these feelings of grief each time my children have a setback. In some ways though I don't think they ever really leave me. Sure, I have my black dog days but it goes deeper than that and I do believe it is because the future is unknown, it is a disease without a beginning, a middle and an end.
I have wondered myself lately how I reconcile myself to having both of my children diagnosed with CD....
How do I live and function with fear and uncertainty simmering below the surface, forever being poised for flight like a gazelle, will worry overwhelm me, do I have the capacity to do all this for two children.
It is bloody hard at times but I know I will get through, as parent's we all will, they are our babies and you always find that extra bit of oomph when you least expect it. And thank goodness for this forum! :)

@Kimmy...I say the exact thing your Mum does, I tell ya, what I wouldn't give to have this disease and have it spare my children. Believe me, you aren't upsetting your Mum hun, not in that sense. You are her baby and always will be and that is an indescribable love, it is deep and raw and that is why she feels the way she does, not because of anything that is happening to you over which you have no control, no choice...:hug:

Dusty. xxx
 
Jessi, you are backwards because you are from Utah... *poke*

Thanks for the thread Dusty. I have only been on the forum for two days.. I have been moved to tears more than once by reading what others have posted. It hits SO close to home to read what others are going through. From the fear, to the acceptance, to the suffering of loved ones involved. One reason I think that those of us who are afflicted deal with this better (poor choice of words) is because, we simply have no choice. Our loved ones, and caregivers have to make a conscious decision to be supportive, involved. Even parents of sick children have to decide to be there for their kids, even if they believe they have no choice.. they do.

I am grateful to have stumbled upon this forum yesterday.
 
What is acceptance?

I have been thinking about this in relation to chronic disease and I wonder if acceptance is saying I acknowledge that I have Crohn's and that is it.

I hear people on TV say that they forgive the person that murdered their loved one and I think to myself...how can you! But is that the same as acknowledging you have a chronic illness? Do the same survival mechanisms kick in? If you don't reach that level of acceptance and acknowledgement does it become so all consuming that you barely function?

I have accepted that my children have CD in that light. I have to or I don't think I would be any use to anyone. I could quite easily curl up in a ball and cry and endlessly question why but where does that get me or my children. But that level of acceptance, or perhaps acceptance fullstop, when it comes to this disease is just that...Hi, I'm Mrs Bloggs and I have Crohn's. It doesn't stop you bouncing between the stages on any given day, it doesn't stop you from being pissed off, it doesn't stop you from wishing you didn't have it, it doesn't stop you from feeling overwhelmed, it just says I have Crohn's.

Dusty. xxx
 
When I was in grief counseling I was told that everyone goes through the stages at different times and sometimes they even return to different stages at different times. And they often overlap. It is very complicated and fluid. Also the way people experience each stage is different. It is very individual. The only thing is that everyone will experience each stage at some point.

I think the most important thing is to experience what you are experiencing. You don't have to pin it down or label it or make sure you're progressing or worry if you're regressing.
 
I was talking to my husband about this the other day! Wow!

I have gone through all of the stages with my illness (accepting I have something, whatever it may be at this point), and I know I will go through it again when I figure out what it is.

My husband has not gone through all of the stages yet. He said to me the other day "I'm grieving, ok? I will always be grieving over this, for the rest of our lives". It really bothered me, and I realized something...he shouldn't be grieving always, right? He should accept this at some point, and the grieving process should stop. He has been very negative the past year over it, and I'm wondering if he will ever try and accept it. *shrugs*
 
Unfortunately it's hard to say what level of acceptance he will come to but I think what makes it very difficult for you both at this point is that you are undiagnosed. I guess it is hard for him to reach acceptance when he doesn't know what it is he is accepting.

Your level of acceptance to me is what I was talking about in my last post. You need to come to some sort of acceptance in order to function and carry on, if you don't then you shut yourself away.

With chronic illness, as opposed to terminal illness, the grieving may come and go with the flares and remissions. For all intents and purposes it isn't at the forefront but it lingers in the shadows waiting.

In many ways I don't think I will ever truly stop grieving for my children and what they have/will endure. It doesn't consume me and I do accept what they have but the feelings that come with grief...anger, bargaining and depression...go a long way to explaining why and how I feel some days. It certainly isn't everyday and now that they are in remission those black dog days are fewer and farther between but the main thing is it is okay to feel like this and recognising that is half the battle.

Dusty. xxx
 
I have been dealing with so much anger over the last few weeks. From the refusal to treat letter, to my wife's own preoccupation of what she isn't getting from me (as a result of my illness) with regards to intimacy, and affection.

I have explained to her SO many times, that I have an illness that has robbed me of my life, and that I am doing my best by her. Still, when I get depressed, and sad about what I am dealing with, she turns it into something along the lines, that I don't give her what she wants, and that I am distant.... Well no SH!T!! I am afraid of the upcoming op, as well as the seeming lack of understanding in the medical community with regards to Crohns. I am depressed that surgery is not the answer, but merely a bandaid. I am angry that I am unable to please my wife, even though I work through the abuse that comes from a spouse that doesn't seem to get what I am going through, or thinks that I am faking it to get out of doing something... WTF?? SERIOUSLY!?!?! Sometimes I just want to put a bullet in my head... The problem with this, I have 2 children that need me. I fear for what they would have to go through with their mother if I wasn't around.

All of this is depressing. And no, I won't be putting any bullets in my head. Not that I don't daydream about it...:frown:
 
:hug::hug::hug:

Depression and anxiety are becoming increasingly recognised by the medical profession as affecting at least 25% of IBD sufferers. It's not hard to see why, ay Slim? As if coming to terms with this disease isn't hard enough but to have to deal with the offhand remarks and lack of understanding of loved ones and friends, as well as the community at large, well isn't that the icing on the cake!

If ever you needed a reason to go on then your children are it. Sometimes it's hard to find reasons within ourselves to continue on the path that was laid before us but look into your children's eyes and you will find all the reason you need. You will endure because your children need you just as I endure because my children need me.

Dusty. xxx
 
Not to say my wife is terrible. She has been by my side, from the onset. She does bust her bottom to stay on top of things.. I think much of her anger comes from the powerlessness of watching me deal with this illness. She has worked two jobs to support the family since '09. Even after I received my SSD, she is still working both jobs, albeit less than before. I just don't know what to tell her about that anymore. For me, that time is passed, and we have new battles to face together, rather than with each other. Even having to argue is so taxing... I have been dealing with regular flares since '09, only going to the ER once in that time; until maybe June of this year. That was when the Missus was eligible for insurance. Since then, it's been a small bowel follow through, small bowel CT scan, a series of Cipro, and Prednisone. Not to mention two doctors giving up their preferred vernacular to tell me that; "You're a mess, you need surgery." Also: "You are a time bomb! No fiber, No juice, No veggies, No rice..." (the list goes on.) All of this within a few weeks. Only to determine I need surgery, and have for at least two years... UHG!... I hope to have the op in January. Hopefully not sooner. I couldn't sleep the first week after I talked to the surgeon. This is the second.

*Rant Over*
 
I understand Slim. I know you weren't being disrespectful to your wife. You are going through a very difficult time and that means it can become overwhelming and all consuming.

You need to be able to vent mate.

Dusty. xxx
 
Slim Johnson said:
I have been dealing with so much anger over the last few weeks. From the refusal to treat letter, to my wife's own preoccupation of what she isn't getting from me (as a result of my illness) with regards to intimacy, and affection.

I have explained to her SO many times, that I have an illness that has robbed me of my life, and that I am doing my best by her. Still, when I get depressed, and sad about what I am dealing with, she turns it into something along the lines, that I don't give her what she wants, and that I am distant.... Well no SH!T!! I am afraid of the upcoming op, as well as the seeming lack of understanding in the medical community with regards to Crohns. I am depressed that surgery is not the answer, but merely a bandaid. I am angry that I am unable to please my wife, even though I work through the abuse that comes from a spouse that doesn't seem to get what I am going through, or thinks that I am faking it to get out of doing something... WTF?? SERIOUSLY!?!?! Sometimes I just want to put a bullet in my head... The problem with this, I have 2 children that need me. I fear for what they would have to go through with their mother if I wasn't around.

All of this is depressing. And no, I won't be putting any bullets in my head. Not that I don't daydream about it...:frown:
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You and I are going through the exact same thing. My spouse is treating me the same way for my illness. We are trying to work through it, but he is being very stubborn. My husband doesn't think I'm faking it, but he gets very angry thinking I do more for others than for him, which is not true. I am also going through the depression, and I know how hard that is as well. My husband and I have made a breakthrough in realizing he hasn't accepted the illness, and I'm hoping that realization puts us on the road to recovery. He is also going to counseling on his own to try and sort it out, and when I get back to Germany (I'm away from him right now finishing my degree) we are going to do marriage counseling. I hope you and your wife are able to find a middle ground as well!
 
Actually, Alienwonder, I had a big meltdown with my wife yesterday. It seems that her typical response to my illness is anger. Which aggravates my CD like no other. I have taken it upon myself to seek counseling for myself. I can't pine over my wife's decision to turn her back to my illness. I have children who need me. I have me who needs me. I can't juggle my illness, children, and her insecurities, and selfish needs. I don't have the wherewithal. I just hope the therapist will be able to help me cope with things until my OP.
 
I am so sorry. I am continuing to try with my husband, but I completely understand where you are coming from. The stress his negativity causes makes my illness worse as well. I guess I just sit here and hope he just realizes he hurts my feelings with taking his grieving out on me, and I hope he changes his ways and calms down. We did have a turning point when we talked and I told him he wasn't accepting my illness...he agreed and apologized, which was wonderful. I'm hoping we make little improvements like that, and slowly but surely accept this new life and get into a better routine.

Many hugs to you, and I hope the councilor helps you get through this.
 
I'm so sorry Allie and Slim. Times are rough for both of you. I hope that it doesn't last for long. I am very blessed to have an extremely supportive husband. Sometimes I forget how lucky I am. I thank you both for reminding me - but sorry that it's at your expense. :hug: I hope you can find the happiness that I have discovered in my marriage. It is so vitally important for our health.
 
The importance of family harmony is so often overlooked.

One way to hurt a depressed person, is to ignore their pleas for help. Sometimes, I think I would be better off calling out on the top of Mt Olympus, than to talk to someone close to me..
 
Unfortunately, Slim, we all end up hurting the people that we love the most. Your wife probably loves you a great deal. I'm sorry that it feels like she turned her back on your illness, but maybe that's her way of pleading for help. *shrug*
 
Jessi said:
Unfortunately, Slim, we all end up hurting the people that we love the most. Your wife probably loves you a great deal. I'm sorry that it feels like she turned her back on your illness, but maybe that's her way of pleading for help. *shrug*
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You may be right, her approach is all wrong. I have lost 14lbs since my last Dr visit, and 6lbs in the last week, due to the stress. I was bawling at the Dr office... I feel so ashamed, I am 37 next month, and I thought this sort of suffering was behind me. Maybe you could talk to her? I would PM you her #.
 
Slim Johnson said:
You may be right, her approach is all wrong. I have lost 14lbs since my last Dr visit, and 6lbs in the last week, due to the stress. I was bawling at the Dr office... I feel so ashamed, I am 37 next month, and I thought this sort of suffering was behind me. Maybe you could talk to her? I would PM you her #.
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----

She doesn't seem to comprehend, or is in denial about the impact her actions have on me. I love her so much, but she is killing me!:sign0085:
 
Slim Johnson said:
You may be right, her approach is all wrong. I have lost 14lbs since my last Dr visit, and 6lbs in the last week, due to the stress. I was bawling at the Dr office... I feel so ashamed, I am 37 next month, and I thought this sort of suffering was behind me. Maybe you could talk to her? I would PM you her #.
Click to expand...

Maybe we ought to get together. A double date, maybe? My husband has such a grasp on this reality that it blows me away. He may have a strong influence on her way of thinking. He is so good with helping people understand things, and helping people want to care more. He boggles my mind.

Was your wife friends with your friend that passed away? Did she understand better when there were 2 of you going through it? Sorry if these questions are overstepping. I know it's a sensitive subject. :rosette2:

I know you love your wife, and it's okay to cry. I cry all the time. My husband hates it, but I catch him crying, too, sometimes. My disease really scares him, and has motivated him to become a better person.

Anything that we can do to help, we would try our very best... :hug:
 
Perhaps a double, once I am on amicable terms with my wife. She is VERY angry right now. All I can think is that she can't cope with what I am going through, so she is lashing out at everyone in the house. It is so depressing. I have panic attacks when she gets home, or comes stomping up the stairs to instigate something. Even happened this morning....

Day 2 on 40mg Pred. and I am still super fatigued. Usually I feel like a crackhead when I am on the juice.. I must be worse off than I think.
 
I would love to meet the two of you. I know that you are probably not wanting to do anything until you get this flare under some control, but we can make it work. We'll go somewhere where we can sit right by a bathroom.

I'll PM you.

About your prednisone, I was put on 60mg last time with immediate results. I hope 40 works for you.
 
I must say I relate to a lot of what you all have written. I have been feeling pretty depressed in the past weeks...but was not sure why. Joined this forum has, in one way, made it worse as I am at the beginning of this illness...and now I can see how bad it can get....I really admire how you all cope! My anger has been at the lack of clarity...I have been prescribed Pentasa, have all the symptoms of Crohns, but have no formal diagnosis... And I can see that many of us are also angry at the lack or clarity that comes with this illness itself. And at the doctors for not having clear answers. But really I guess we are really angry that we are all and have to deal with so much!
I'm not sure how to deal with my depression...but thinking of going on anti depressants.
 
I have been reading these messages on here and thinking of my 21 year old son who has been having symptom of crohns for 3 years and has finally been diagnosed. He is in total denial and I think I'm just scared for him.......... today he was in pain, as I looked at him he looked like a shadow of his former self.......... after being a strong level headed mum and a single parent for many years I confess I'm scared........ very scared and I feel alone.

He cried today for the first time in years and I couldn't "fix him" or take the crohns away, I feel helpless.
 
Hi vonim,

I am so sorry to hear about your boy...:hug:

Is there anything more heartbreaking and soul destroying than seeing your child suffering and all the while we are helpless to take away the pain and distress? No there isn't.

I know it is small comfort in these dark days but just know you are not alone Mum, we are here and we understand, we have been there and are there.

Welcome aboard hun, there is a load of info and experience on the forum. :) I hope you stick around, maybe we can help out and make the journey a little less scary and arduous.

Thinking of you, :heart:
Dusty. xxx
 
Hang in there Vonim. It's tough to deal with someone who is in compete denial of their condition. My uncle is going through the motions now for an IBD diagnosis. As far as I am concerned, he has Crohn's.. Sadly, he basically ignores my advice until he hears it from a Dr., then he still doesn't take it seriously.

Only time can make these guys realize what is going on with their bodies...
 
I was diagnosed when I was 21 (I'm 25 now). There will be some pretty severe downs but there will also be good times. I myself recently had surgery and the time before that was very dark, but post op I am feeling amazing/almost "normal."

Both of you are strong enough to get through it, if you take it one day at a time and keep pushing forward. I wish him well.
 
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welcome Vonim... you will find a bunch of very supportive people on this forum. My daughter was diagnosed in Feb of 2011. she is in remission right now.. but as you will read; you never really know when they will have a flare up; so even in remission I live with anxiety for her. Be there for your son; he will need alot of support from you and for you to be his anchor. Keep his diet healthy and give him lots of hugs. since we are mom's .. I can't help it; I cry in front of her.. but I try not to and we are lucky; her dad and my husband is very supportive and strong too. it has not been a good year; but certainly is good because she is in remission and gained 13 lbs back and right now she is not on any prescription meds. I pray ALOT... not just for her; but all these people that are affected by this disease..God Bless
 
I'm stuck in depression. I'm 23 healthiest member of my family I always took care of them and now I'm so tired I barely function. I took on a dual degree and worked no complaints but now I don't know if I can pass the semester. I don't know what to do I feel like no one gets it. I'm sick and it's not going to get better.
 
anomiidae said:
I'm stuck in depression. I'm 23 healthiest member of my family I always took care of them and now I'm so tired I barely function. I took on a dual degree and worked no complaints but now I don't know if I can pass the semester. I don't know what to do I feel like no one gets it. I'm sick and it's not going to get better.
Click to expand...

It is going to get better, and if you're stuck in depression, please get yourself to the campus doctor right away! There's plenty of things that the doctor can do to help you get you back on track and back in the driver's seat. It's the key to feeling better, in my opinion. When small problems become large, and large become too large, it's not a healthy way to move forward in your life, especially at your age with all your potential and the best years of your life ahead. Please read this and call your campus doctor's office. You can do it, anomiidae! It might feel heavy right now, but with just a little direction, you can be back in the saddle and on your way. :hug:
 
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.
 
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 .
 
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
 
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
 
Thanks

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.
 
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" :)
 
Depression

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.
 
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.
 
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.
 
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....
 
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DustyKat said:
Well I have been very reflective these past few days which probably isn't a good thing! Hmmm, must be the Sarah effect :lol:. 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! :lol:

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. :heart:
Click to expand...

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.
 
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.
 
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
 
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723crossroads said:
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
Click to expand...

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.
 
Jeffer said:
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.
Click to expand...

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 :heart:eek:ther! Blessings!:heart::hug:
 
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!
 
Jam300 said:
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!
Click to expand...

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!:hug:Love conquers all!:heart::heart::heart:
 
Well, now that we all agree that we will make it through, let's have a pity party without the pity! LOL!:ghug:Hugs all around!!!
 
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
 
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. :)
 
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.
 
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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. :heart:

Dusty. xxx
 
DustyKat said:
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.
Click to expand...


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 :dusty: now I'm :eek:utahere:
 
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. :)
 
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.
 
I believe I'm in the anger stage... and have always been.

I don't know why have this happened to me. There is no known reason. I read once, somewhere, that this might be cause by pregnancy smoking; well now my mother does smoke, and my father used to smoke until I was 16 (i'm 26 now).

And it is pathetic that I must always be worried with finding a place to poo, and leaving it cleaned so nobody notices what I did, and do it silently to avoid the constraint... what really pisses me off is that it's not my fault. I am not responsible for the problem, why must I deal with it?

I see Crohn's as a way to prune one's liberty. I feel I am always chained to a lead ball, which makes flying very difficult. And I hate it. I can't find a responsible; must be that the blame is mine and mine alone. Thus I have the feeling that I hate myself. For having a weak blood or whatever.

The worst part is that CD puts me in the risk group for Cancer; also Azathioprin, which I'm taking daily. I don't know how will I feel when I find out that I got some cancer, should this happen. Probably will want to jump off of a building.
 
Don't worry about getting cancer it is usually easily treatable and causes less bother than crohns. I had a double mastectomy and afte chemo and radiotherapy got over that but you don't get over crohns.

Both conditions were diagnosed the same time sept 2010 since then had lymphoma and arthritus.

Take care
 
Hey Gustaff,

I hope you are able to move on from the anger at some point. :(

I don't have Crohn's but both my kids do and I spent so much time trying to work out why.

Why them and not me? What I wouldn't give to take it away from them and make it my own.

I have looked at every conceivable aspect of this disease and the only thing that I can find that has rhyme or reason in our case is genetics. I have seen various theories over the years in relation to what someone might or might not have done and not one of them fits my kids.

It got to the point where I had to drop it or it would have consumed what was left of me. It doesn't mean that I still don't want answers and solutions but I had to move on for the sake of my kids, me and everyone. I have often thought is like where someone forgives a murderer? I could never understand that but maybe it is the same sort of self preservation? Either forgive or be consumed. I don't know.

Good luck mate, I hope you soon find the light at the end of the tunnel. :ghug:

Dusty. xxx
 
Kimmyd-My sister has Crohns and has battled the past 30 years-Never Did i consider my children could contract the disease My Mother is in denial that it is hereditary. Mt Son turns 31 this year and has been battling it since his dx at age 24. Such relief to have a dx. I worry tho-I have 3 children and 3 living Grandchildren.(I lost a granddaughter to a genetic problem that occurred at conception). But I am faithful person and Believe God only gives us what we can Handle-And I have amazing children and would not change anything. Children are your greatest joy and disappointments,and greatest worry. But the Love they give you is better than anything I have ever known. True unconditional Love. So yes us Moms worry-But not to have our children in our life ,I personally would be sad not to have children. I would not change anything-Except make them free of Illness
 
My husband of 13 years (20 years together in total) has had crohns for 5 years. He has never accepted his condition and wont talk about it. He wont let me talk about it to anyone, even his family. He has had depression in the past and i believe he is going through it again.He is currently on an 8 week course of prednisolone. Two weeks into the course he became withdrawn angry and then told me he no longer loves me and doesnt want to be around the kids (we have 3 beautiful children 4, 6,8). Our youngest has type 1 diabetes which is extremely draining on me and makes me think perhaps I didn't have enough energy to care for my husband as well. It has been 4 weeks now and he still hasn't come back. He has seen the children a couple of times. He says that he needs to be on his own and he is not talking to any family members. He has shut them out too.I am so worried.
 
Bron,
I am so sorry to hear what you are going through but so glad that you reached out to us. Prednisolone is a very severe drug with severe side effects. It causes issues emotionally with people and thank God it is usually used short term. However, Prednisolone is used in an extreme flare and serves a purpose. As you already know, when flaring this disease is a nightmare for everyone involved.

It sounds like you have a lot on your plate right now, and he is trying to handle his condition the best he can too. This disease is so personal and if your husband is a private person anyways, it may be more than he can handle.

You can not force your husband to get passed the denial stage, but you can help yourself by getting some counceling if possible, read up on the disease and know that he needs you. Just let him know that you are there for him and let him go for now. Knowing that somebody cares is so important. As much we want to help others with this disease, we really cant. They have to learn how to manage it physically and emotionally.

Now you are only one person and cant do it all. Your daughters health condition deserves all of your attention, and hopefully you can fit in a minute of you time. This forum is a life saver. having someone to talk to is so important.

sending lots of support your way,
Julie
 
Oh God

I feel guilty right now, for feeling like that with myself when there are other people suffering so much worse than me :(

I hope things turn out right, bron, I really do.
 
Hi Gustaff

Don't beat yourself up we all feel like that from time to time, as long as we recognise it we can cope with it.

S
 
I just isolate myself from everyone. I don't want anyone to see my disease. Because I feel like I am the disease. Nothing helps physically or mentally. I'm mortified that I am whining at this moment.
 
Please don't isolate yourself. Other people cannot see your disease and also it it not your fault. Sometimes if you talk to people matter of factly about it they usually understand. Feel free to whine we all feel like it from time to time.
 

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