Share Facebook


 
07-05-2013, 08:48 AM   #91
Gustaff
 
Gustaff's Avatar
 
Join Date: Jun 2012
Location: BH, Brazil
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.
__________________
Fortune favors the brave.
07-05-2013, 04:43 PM   #92
Jeffer
 
Join Date: Jul 2011
Location: York, United Kingdom

My Support Groups:
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
07-05-2013, 06:06 PM   #93
DustyKat
Super Moderator
 
DustyKat's Avatar
 
Join Date: May 2010
Location: New South Wales, Australia
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.

Dusty. xxx
__________________
Mum of 2 kids with Crohn's.
07-12-2013, 10:21 AM   #94
TonysMom
 
TonysMom's Avatar
 
Join Date: Jul 2013
Location: Flagstaff, Arizona
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
09-04-2013, 09:28 AM   #95
bron
 
Join Date: Sep 2013
Location: Western Australia, Australia
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.
09-04-2013, 10:11 AM   #96
Hope345
Forum Monitor
 
Hope345's Avatar
 
Join Date: Oct 2012
Location: eugene, Oregon

My Support Groups:
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
__________________
Daughter (age 17) diagnosed with Crohns Colitis/UC 1/2012 Mod/severe changed to U.C.: 11/7/2014 anemia:blood transfusion current: Flare, weaning from Prednisone, still bloating: Meds ,Pentesa: 2000mg twice daily, Vegan diet, mesalamine enemas .Previous: mercaptopurine, Remicade (13 treatments), Imuran, prednisone ), Flagyl, iron infusions, cortifoam,
Continue to be hopeful
Daughter: age 21, undiagnosed: GI issues
09-04-2013, 12:30 PM   #97
Gustaff
 
Gustaff's Avatar
 
Join Date: Jun 2012
Location: BH, Brazil
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.
09-04-2013, 12:33 PM   #98
Jeffer
 
Join Date: Jul 2011
Location: York, United Kingdom

My Support Groups:
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
02-08-2014, 11:53 AM   #99
jazzsous
 
jazzsous's Avatar
 
Join Date: Nov 2013
Location: Clatskanie, Oregon

My Support Groups:
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.
02-08-2014, 01:43 PM   #100
Jeffer
 
Join Date: Jul 2011
Location: York, United Kingdom

My Support Groups:
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.
02-08-2014, 07:33 PM   #101
jazzsous
 
jazzsous's Avatar
 
Join Date: Nov 2013
Location: Clatskanie, Oregon

My Support Groups:
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.
07-28-2014, 09:36 AM   #102
aideen33
Senior Member
 
aideen33's Avatar
 
Join Date: Jul 2014
Location: Dallas, Texas

My Support Groups:
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.
__________________
Homeschooling Mom of 2 special needs kids, grad student in special ed. & geek girl.
Dx'ed (June '14) Crohn's colitis w/ possible small bowel involvement, Pyloric Stenosis. Asthma, Multiple allergies, pre-diabetic, unexplained tachycardia, hypertension, restless leg, and pos. ANA, waiting for rheum. referral for possible lupus
Meds: Azathioprine, Methyprednisolone, metoprolol ER, Lomotil, Tramadol, Protonix, flexeril, ropinirole, farxiga, vits D, b12, biotin, fish oil, glucosamine

Last edited by aideen33; 07-28-2014 at 09:42 AM. Reason: Adding Signature
07-28-2014, 04:33 PM   #103
lenny
Senior Member
 
Join Date: Jun 2014

My Support Groups:
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.
07-30-2014, 10:49 PM   #104
Hal Silver
 
Join Date: Apr 2014
Man I swear I've cycled through all of these at least ten times in the last two years.
09-09-2014, 06:22 PM   #105
IofNewt
 
IofNewt's Avatar
 
Join Date: Aug 2014
Location: Verdun, Quebec, Canada

My Support Groups:
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).
__________________
~~
Diagnosed with Crohn's in the 1990's
Treated with Flagyl in the past, but now taking Purenitol.
Started with Remicade Aug 6, 2014. Also using Imodium
Had resection in June 2013, but have a recurrence
already.
01-17-2015, 04:27 PM   #106
G'day
 
Join Date: Jan 2015
Location: Milwaukee, Wisconsin
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.
01-18-2015, 04:44 AM   #107
DustyKat
Super Moderator
 
DustyKat's Avatar
 
Join Date: May 2010
Location: New South Wales, Australia
*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.

Dusty. xxx
01-22-2015, 11:13 PM   #108
Aos
 
Join Date: Jan 2015
Location: Parker, Colorado

My Support Groups:
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. :/
01-25-2015, 02:57 AM   #109
DustyKat
Super Moderator
 
DustyKat's Avatar
 
Join Date: May 2010
Location: New South Wales, Australia
*Hugs* Aos.

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



Dusty. xxx
08-20-2015, 09:22 AM   #110
Guest30
 
Join Date: Jul 2015
Location: London, United Kingdom
I hear you so hard not to judge yet ultimately im happy wish my guts would smile too
11-17-2015, 11:34 PM   #111
ronroush7
Forum Monitor
 
ronroush7's Avatar
 
Join Date: Oct 2013
Location: vienna, Virginia

My Support Groups:
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 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.
11-20-2015, 09:53 AM   #112
SauceySciencey
 
Join Date: Nov 2015
Location: New South Wales, Australia

My Support Groups:
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."
12-08-2015, 12:58 AM   #113
rcmacdo
 
rcmacdo's Avatar
 
Join Date: Dec 2015
Location: Washington

My Support Groups:
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.
12-08-2015, 01:07 AM   #114
ronroush7
Forum Monitor
 
ronroush7's Avatar
 
Join Date: Oct 2013
Location: vienna, Virginia

My Support Groups:
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.

01-14-2016, 04:51 PM   #115
fuzzy butterfly
Forum Monitor
 
fuzzy butterfly's Avatar
 
Join Date: Jul 2015
Location: manchester, United Kingdom

My Support Groups:
· Stoma
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 💕💟💋
Reply

Thread Tools


All times are GMT -5. The time now is 12:18 AM.
Copyright 2006-2017 Crohnsforum.com