Grieving.

Other people can see my disease. I've lost so much weight and I never weighed more than 130 lbs to begin with. Nothing the gastros' have given me seems to work and if it does I end up being allergic to it. I have almost constant joint pain and pain from the crohn,s. I can't eat because I can't keep it down. I can only make about 5 hours a day at work and on top of that I'm a chef and I can't taste the food I create because I have a constant copper taste in my mouth which over rides any other flavors. So far the only saving grace is that I haven't ever had the runs. I do try to dwell on the good things but there aren't very many. I really feel like giving up. There isn't much quality in my life.

Between Anger and Depression

Im newly diagnosed. I had a brief period of "Well now at least i know what this IS" but mostly i am bouncing between Anger and Depression. I fluctuate between "why me? this isnt fair! I had enough I was already dealing with, why give me one MORE thing" and "well now I cant be the fiance, mother, person Ive always been,so much is out of my control right now."

I suspect this will get better once i can hopefully find a treatment that gives me some actual symptom control and all, but right now? yup anger and depression rule the roost.

When my son was first diagnosed, I was terrified. Then I became very sad and that's where I have stayed.

I think that's where I'll be until there is a cure.

Man I swear I've cycled through all of these at least ten times in the last two years.

I used to have this whole, "well this is my life now" attitude and I went with the flow for the most part, but after more than 10 years now, I'm getting a bit frustrated. A lot frustrated actually.

As bad as things were before my resection, they are in a lot of ways much worse now. I am not having to drag my ass to the hospital twice a month anymore, but if that is my only bright-side... yeesh.

My brave face, or my armor or whatever I had before is long long gone now. I am now petrified and a little bit rage-y (and without steroids, go figure).

Hi Dusty,

Thanks for being here. Writing this with two tear tracks down my face...yesterday was my first time here. I've been keeping my bizarre sense of humor up as a shield because nobody around me gets it.

You do.

Thanks.

..first time in a very, very long time that I don't feel cut off from every other person on the planet. First time in a very long time that I could let the guard down...just a little.

*Hugs* G’day.

I am sorry you have had to find yourself here but in doing so I hope you find the support and friendship of like minded people takes a little, or a lot!, of the loneliness away.

The forum is a place where you can open up and say what you are feeling in safety and with understanding.

In my thoughts. :heart:

Dusty. xxx

I tend to jump between depression and anger. Though I suppose I have been sick for a full 2 years now with little break. But yeah I find myself getting angry at life and then super depressed thinking that though things are good in my life, it is super depressing that I can't really enjoy any of it. I am in pain all the time, tired and just hating it all. But I know its a phase and it'll pass. I hope.

What is most disgusting is how I sometimes wish I had a different disease that had a more "set" path to remission or cure or control. Even though that is terrible and those with other diseases probably think that is sick of me to think that, like you have no idea what cancer is like or celiac's etc, but then I think at least you have a plan. My plan is to try a bunch of fucked up meds that may or may not work while my insides destroy themselves and people just think I have to go to the bathroom a lot end of story. Grass is always greener on the other side I suppose.

Please don't judge. :/

*Hugs* Aos.

No judging here mate and I hear you loud and clear.

:hang:

Dusty. xxx

I hear you so hard not to judge yet ultimately im happy wish my guts would smile too

TonysMom said:

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

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My mother found out that she had leukemia around the same time I had surgery for a fistula. She was more concerned about me than she was about herself.

I jump back and forth still through all of them. Usually each step peaks in intensity around doctors visits hehe.

Of course, for me I think there's a few more step for all the weird variety of random things and specifics for patients in a disease like crohn's....


Self-appointed fixer mode
"I'm a medical researcher and EFF it those doctors are nothing but glorified car mechanics and I'm an engineer...bugger it, I'll just figure the damn thing out myself...I have a lab, let's grease this sucker..."

Logical craziness
"I'd rather testicular cancer, it has a 95% cure rate."

Positive assumption
"They train very hard and I should trust their opinions and have years of experience with this disease..."

Engaging with treatment to feel more in control
"Oh why wait 3 months to get approved for humira...I'll just make 5 years worth in the lab..... Come on, it'll be fun....dude I genetically modified cancer cells last week, this is nothing.......hey, what's that look for???"

Negative acceptance
"Bugger it, I'll never figure it out...I'm buying a tomato farm and drinking liquid for the rest of my life. And watching tomatoes grow."

Positive acceptance
"You know, these ostomy bags are made to be easy these days. I could literally just unclip one and throw it at someone I don't like."

Fed up
"Crohn and Hurst used to inject patients with dysentery and e.coli serum. In the 1920s.... And even THAT had better success rates than pentasa for the terminal ileum."

Despondence
"If I take any more fracking supplements they won't be supplements. The food is the damn supplement at this point."

I was recently diagnosed. At first, I accepted it right away, thinking: I actually know what it is now. I can do something about it, or there might be a way to at least treat it. As it has set in more, and as I read up more on it, I'm starting to go back and forth between denial and 'why me?' I suppose the 'why me' part is anger, although I'm not exactly sure if I'm angry about it. It's fascinating when I step back and look at things without thinking it pertains to me specifically. (I actually find medical stuff interesting. Especially when it's my own results, but it still feels like a detached thing.) Like I thought the little ulcers that scattered across my colon (in the colonoscopy pics) looked really beautiful. It looked like a starry angry red sky. I knew it wasn't a good thing, but I was still in awe of it. But, then I get scared again when I apply it to myself. I'm not sure I'll truly accept it, though. I think the first 'acceptance' was more like a relief than anything.

My mom passed away from cancer 3 years ago, and I know she went through some of these. I think with her passing away I went pretty much through all of them except bargaining. I actually ended up being relieved knowing she wasn't suffering anymore. I still miss her, though. When I see 'disease', I can't help but think back to what my mom went through. Although, I know it's not the same. I have a hard time wrapping my head around the 'disease' part as is.

I remember a couple of years after being diagnosed. I had an abscess and when I was alone I would say why me. We are all here for you. Best to you.

I think we have all asked 'why me' over many things in our lives. I know i have .. this included. I felt relief when told i had crohn's. I thought right i know what it is n now we can work on trying to get it under control. I even said to the doctor "ok thank god for that " . He looked at me eyebrows raised n said "you do know you will have it for life ?" "Yes but at least your not telling i have months weeks or days to live"i replied. As at that point i was convinced i was not long left for this world. So ye relief was my 1st feeling. The why me's came later but they did come. I think its natural to think that. Even tho we know there are people worse off than ourselves. This is the place to be for help n support, as we know how it is n how it feels to deal with this condition. Love hugs n support to all