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06-11-2015, 02:38 AM   #1
gadgetninjette91
 
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Location: Portland, Oregon

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Crohn's and Self-Blame

Hello to all who are reading this now. I'm a fairly new Crohn's diagnosis and I've come to accept it in general, but one thing I still have a problem with is self-blame. Basically, I constantly tell myself that it's my fault that I have this and I did this to myself, I should never have picked up cigarettes (quit 2 years ago thankfully), I should've eaten less candy, every possible way to blame myself for developing Crohn's has crossed my mind. When I'm flaring or in pain and my mom says, "I'm sorry you're so miserable," I usually reply with something along the lines of, "Don't be, this is my fault, I did this to myself." I had genetic testing done which showed three genetic mutations associated with IBD so I wonder if it could've happened anyway, but I need to reach a better mind state and stop blaming myself because I know it's not helping me. Any and all advice is welcome.
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Can you spell jejunoileitis?

Crohn's disease of the small intestine (jejunum and ileum), dx April 2015

Current Meds: Cimzia 200mg injections every 2 weeks, Dexilant, Lamotrigine

Past Meds: Sulfasalazine 500mg 2 tabs 3x/day, Pentasa 4,000 mg/day (4 500mg caps 2x/day), Apriso 0.375 g (4 caps 1x/day)

Do we share this uncommon presentation? If so, feel free to shoot me a message.
06-11-2015, 03:33 AM   #2
DJW
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Hi.
Early on in this journey the physical and mental stress of IBD is high (never mind the actual disease). There are just NO easy answers. We have members here who have very youv children with CD. We have a group over 50 when diagnosed. I've met people with strong genetic links and others with no links.

IBD is a complex group of diseases. Give yourself time to adjust.
I'm sure others will be along with more suggestions.

Sending you my support.
06-11-2015, 05:31 AM   #3
crohns510
 
Join Date: Jun 2015
i think they call that negative thoughts with that self blame and you should stop that because its a depressive way of thinking and will leave to no good its the depression trail. i get thought because I felt a lot of self blame with my illness
06-11-2015, 12:27 PM   #4
teeny5
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I was very depressed at first. Some of which I think was brought on by having long term stress and pain on the body. I did take Prozac for a while to help with the depression. I was just so overwhelmed by it all.

Also...you did nothing to cause this. There are people here with all different lifestyles and circumstances. My mom has tummy issues, but never diagnosed. I was diagnosed at age 28 but my mom believes I had a mild flare around age 12 that originally they thought was appendicitis...but wasn't. We ended up leaving the hospital when they couldn't figure out what was going on, it eventually went away...very mild. Who knows why we got this disease, but I refuse to let it take over my life. Maybe I can't do everything I once did or everything I want, but I try to do little things I enjoy when I feel depressed about having the disease. I like arts and crafts so I might do a little craft project to lift my spirits and get my mind off dwelling about the disease. Try to stop yourself when you want to make a negative comment. I changed mine to "it is what it is." Basically this is the hand I was dealt so I have to make the best of it and move on. Move forward. I know others have felt better writing all those negative feelings in a journal...getting it out sometimes helps to let it go. This forum has helped me by allowing a place where I can vent to people who actually know what I'm going through.

I hope you feel better. ((((hugs))))
__________________
Currently on: Colazal, Prilosec, multi-vitamin, probiotics, total EFA's, glucosamine.

Previous meds: Sulfasalazine, Asacol, Rowasa, Pentasa, Entocort.


"Adopt the pace of nature: her secret is patience. -Ralph Waldo Emerson"
06-11-2015, 01:13 PM   #5
rubberduckie1313
 
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Hello to all who are reading this now. I'm a fairly new Crohn's diagnosis and I've come to accept it in general, but one thing I still have a problem with is self-blame. Basically, I constantly tell myself that it's my fault that I have this and I did this to myself, I should never have picked up cigarettes (quit 2 years ago thankfully), I should've eaten less candy, every possible way to blame myself for developing Crohn's has crossed my mind. When I'm flaring or in pain and my mom says, "I'm sorry you're so miserable," I usually reply with something along the lines of, "Don't be, this is my fault, I did this to myself." I had genetic testing done which showed three genetic mutations associated with IBD so I wonder if it could've happened anyway, but I need to reach a better mind state and stop blaming myself because I know it's not helping me. Any and all advice is welcome.
It can be really hard to get out this cycle. I have been the worst with it. It is difficult to get to that place where you are at piece with it. I have had this disease for almost 8 years and the self-blame and depression are the worst. It is hard to be positive and want good things when you are in so much pain and are miserable. I am just now getting to a place where I am not looking back, but trying to allow myself to look ahead. I am trying to remember my goals and what makes me truly happy, but that can be hard when you are dealing with all of this. Over the years, I have thought, if I didn't push myself so hard or maybe if I ate better as a teen, maybe this wouldn't have happened to me.

I understand each one of us is on our own journey and I hope, when you ready, you will begin to move forward. Many of dreams and goals have changed since I have gotten my diagnosis, but many have also changed. I got stuck in the loop of feeling held back by Crohn's Disease. It was so freeing to be able to start remembering what I wanted and understanding that I could be happy, even with Crohn's Disease.

I know it is hard to remember all the time (I still struggle with it), and I am not about to say positivity is a cure-all because that is boohockey, but try to remember, this happened, you can't change it but, you can remain hopeful. I do believe this has been the worst part of this disease for me, feeling defeated by it. I don't want to anymore and hope in the future you can get there too.
06-11-2015, 06:40 PM   #6
Axelfl3333
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Its a dumb disease you didn't,t do anything wrong just got unlucky.
07-26-2015, 06:04 AM   #7
twiggy6
 
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Location: Bristol, United Kingdom
I've struggled with feelings of self blame as well. Particularly as I don't work, I've really struggled with the feeling that I should be able to work even when I've known I haven't been well enough. I find the internet can be an awful source for making these feelings worse. As there's always a new diet or lifestyle change being sold to you as a cure. Inadvertently teaching us it's our own fault.

When I'm in a good place I can think of my illness as something I can't control at all, and also see it as a part of me, like a limb that you couldn't cut off. I don't find thinking it happened for a reason particularly helpful, but more that now I have it it's an inseparable part of me.

Not sure any of this rambling will help you. But sometimes its helpful to know you're not alone in feeling a certain way.
08-03-2015, 10:10 PM   #8
ScubaWoo
 
Join Date: May 2012
Location: Pasadena, Texas

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I have had crohns disease for about 15 years, and I was in denial until 3 1/2 years ago and went through emergency surgery with removal of 13 inches of my small intestines and part of my colon. A single parent. Of course it's so typical of your family members, or at least mine, say you can eat this....or it's all in your mind...you're crazy...and "oh, if you get a migrane from humira then quit taking it...also...mother said I was in the most lowest part of my life!! YES!!! I have been depressed a bit after surgery because I lost 2 jobs and one unemployment because I was so sick. I really don't have a suppoert system at all, but through the years I refuse to let this disease "label" me and identifY who I am!! It took years to get to this point. However, this disease is "no one's fault". You didn't do this to yourself. I have done so much research, and can testify that worry can only hurt you worse. Worry and feeling as though it's your fault is so hurtful to you, because you did nothing to cause this...you couldn't have. There is no evidence that anyone can cause this to themselves, unless possibly cronic stress and anxiety (which I had both), but I still can't blame myself. Had I "known", which physicians still can't be certain...I would have been treated for anxiety to be able to chill out to sleep at night. Truly, I have accepted Crohn's disease, and yes I don't feel well at times, but I have come so far I truly feel that I am in the best place in my life my soul is at peace and not afraid. I am truly happy. I pray for all you with blaming yourselves...it is not your fault..find peace, embrace and move forward. Regain "your" life back and get out when you can and breathe flowers and feel sun on your body. I can't live as I use to because I used to be so athletic...but riding bikes and neat things like this will help your soul breathe. Please enjoy your life...we only have one life to live . I hope so many of my fellow people read my testimony...because I am a walking truth. I am not in remission and take humira twice a month...but I am "great"...I hope you think about this mind and heart set. It's worth "living" our lives!!
08-21-2015, 11:15 PM   #9
Rudena
 
Join Date: Aug 2015
Location: Winter Haven, Florida
Thank you
08-25-2015, 01:41 PM   #10
worriedboy
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This is a facinating thread.
I cannot say that I gave up self-blame all together; but to some extent it drives me to keep an eye at myself, so I dont do stupid things that are bad for health.
However, after giving this so much tought, today I come to believe that we control out lives only to a limited extent. We can "play" with what we are given, but if we are given something that is what we have to deal with.

So I say, yes, do your best to be at your best. It has been proved that sports, for example, reduces the risk to different ilnesses. Is it any promise you never get any of those ilness ? not at all. But it's still worht doing your best.

As. for the past,...ah, well. It took place long ago. We have enough to deal with in our present, dont we ??
08-25-2015, 02:21 PM   #11
fuzzy butterfly
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Hi, this is not self inflicted , it gets who it wants when it wants regardless of what you do or dont do, so please never blame yourselves. some say its genetic some lifesytle choices etc but it dont realy make any odds it is something that just happens. unfortunately we do just have to deal with it and try and make the best of it, and not allow it to rule us we have to rule it, remember you have 1 life ,live it to the very best of your ability. love, peace ,health and happiness to all..
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5yrs since dxd. 3yrs in remission.. in remission since march 2014, dxd july 2012, ileostomy march2014, reversed feb 2015 all's good so far
Mandy
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