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jamiii sayys
New Member


Date Joined Mar 2009
Total Posts : 13
   Posted 8/18/2009 5:42 PM (GMT -7)   
Do you ever accept the fact that you have chrons?
Right now i feel like im just going to be mad about it for the rest of my life.
 
It's so frustrating because i have no one to be mad at. I have no one i can blame and i feel like there is no one to talk to.
I can talk to my friends and family but they dont really understand.
 
When i'm having good days i feel like i've accepted it but the minute i start to have a bad day it all goes down hill.
I could rant about this all day but it wouldnt do any good.
 
thank you for listening.

jmiller056
Regular Member


Date Joined Feb 2009
Total Posts : 57
   Posted 8/18/2009 6:00 PM (GMT -7)   
In my experience, I go through periods of acceptance, regret, and anger. I think it depends on how much I dwell on it. Which when I'm sick I dwell on it more, and of course you are going to feel upset about it when you are sitting there thinking about it all day on the toilet. There are always brighter days ahead though, I just start thinking about the hope for new and improved medication and treatments up ahead, and it puts a smile on my face.
23 y/o Male; Dx Crohn's Disease in 2001 at age 14.
Lost 3 inches of colon and 7 inches of ileum in 2004 bowel resection.
CD returns in October 2008, Starting the Maker's Diet June 17, 2009
Current meds: Pentasa: 3000 mg; Fibercon: 2 pills 3x; Imodium: 2 pills 3x
Been on: Prednisone, Flagyl, Cipro, Imuran, Entocort, Remicade
Kyrie eleison!


pimfram
Veteran Member


Date Joined May 2009
Total Posts : 506
   Posted 8/18/2009 8:47 PM (GMT -7)   
I can't speak for everyone, but I know I get quite angry when I'm not feeling well. I just remind myself that it could always be worse. As long as I wake up each morning, I consider that good enough.
Diagnosed with CD July 2007
Currently on Remicade, Imuran, probiotics, folic acid, multivitamin.


SydneyJo
Veteran Member


Date Joined Mar 2006
Total Posts : 1354
   Posted 8/18/2009 10:09 PM (GMT -7)   
In the beginning I often thought 'why me', then 'why not me'. I could'nt come up with anyone I hated to wish it upon.
Jo

pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20576
   Posted 8/18/2009 10:52 PM (GMT -7)   
It's kinda part of the package to feel the way you're feeling jamiii, I've had active/flaring crohn's for 18 yrs straight and although I've had some better days, when the bad ones hit, even after 18 yrs of "dealing" with it, I still have resentment over having this DD...that's why support groups like this are so helpful, knowing you're not alone definitely helps, especially on the bad days.

:)
My bum is broken....there's a big crack down the middle of it! LOL :)


littlemissmuffet
Regular Member


Date Joined Feb 2009
Total Posts : 269
   Posted 8/19/2009 8:50 AM (GMT -7)   

When I am having a bad day I resent having crohns, I feel angry that I am ill and sad that I cant do the things I want.

But a couple of days later when I feel ok I am happy as If I havent a care in the world. I suppose I am just making the most of my good days.


Diagnosed 2005.  41 year old female living in UK
 
Current medication  -  infliximab infusions, ranitidine, ferrous sulphate, Vitamin B12 injections.


Jen77
Veteran Member


Date Joined Mar 2006
Total Posts : 2691
   Posted 8/19/2009 12:40 PM (GMT -7)   
I think it's a grieving process for your once good health. When I was diagnosed I cried. I was depressed about it, then I got angry. With a bit of denial. Lots of "why me, this isn't fair" thinking. Then I finally felt like I accepted it. Of course I tend to go back to some of those feelings when I'm sick again. I agree that it's just part of the Crohn's package.

I would say let yourself feel all of those feelings, it's completely normal.


~Jennifer
 
Diagnosed with Crohn's Disease 2/06, and Health Anxiety/OCD 12/08 Taking Asacol, Questran, Toprol XL, and Celexa.


MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 8/19/2009 7:09 PM (GMT -7)   
grieving process is exactly right... it takes time, and sometimes it is a circle.
Forum Co-moderator - Crohn's Disease/Thyroid Disorders:_All comments have the caveat contact your local health care provider.

I will find a way or make one. –Phillip Sidney 1554-1586

All that I am and all that I shall ever be, I owe to my Angel Mother.

The Bucket List- Have you found joy in your life?  Has your life brought joy to others?

Make sure your suffering has meaning…


MikeB
Veteran Member


Date Joined Mar 2006
Total Posts : 1169
   Posted 8/20/2009 7:59 AM (GMT -7)   
Five words: You are not your disease.

RedAdmin
Veteran Member


Date Joined Aug 2003
Total Posts : 1017
   Posted 8/21/2009 7:25 AM (GMT -7)   
I have found that yes I have acceptance of my situation. I also know that being angry only makes me sicker so why waste the energy on something that will not make me feel better. I work very hard each and every day to find something - no matter how small - to be grateful for and to make myself focus on so that I am thinking positive and not negative. I have found it makes a tremendous difference in my health and my outlook.

May you find peace.
Red (Lee Ann)
    "No passion so effectually robs the mind of all its powers of acting and reasoning as fear." - Edmund Burke


CrohnsPatient
Regular Member


Date Joined Feb 2008
Total Posts : 314
   Posted 8/21/2009 8:15 AM (GMT -7)   
I dont want to be a negative nancy or whatever they call it lol, but honestly we all feel this way at some point or another. Even people that have had Crohns Disease for decades end up having bad days about it. And to be honest you'll probably not find another place that you can find someone or many people that have the same experiences as you. And even those people that 'have the same experiences as you' really their experience is their own, everyone is an individual just like our illnesses act the same way, as an individual. And my point is even around here you'll find that you still feel alone or like you dont have anyone to take it out on or like people here dont know what your talking about or what your going through. I know it sounds horrible. But we all deal with it or find a way to deal with it, some in mainstream ways, meainstream means different things to different people, but some take medications like anxiety medication to calm them, some do yago, accupuncture, bio-feedback, couseling, see psychologists, or pschiatrists. It all depends on how you want to treat it and how you want to deal with it.

I hope things get better for you, and they will get better as you go on. We all have to realize that this is part of our lives now, this IS our lives now. Im sorry very much that theres nothing I can do about it, but I am not going to let it inhibit me from pursuing my dreams under any circumstances.

Your in my Prayers, just like everyone else is, and I hope for your sake that things get better. i hate for people to feel this way at the beginning of their illness, or before even being diagnosed or right afterwards, I guess I feel this way because theirs so much more to go in your life, decades to go decades to deal and live with it, and I hate to see them turn negative immediatly or quickly.

Valerie3
Veteran Member


Date Joined Feb 2009
Total Posts : 529
   Posted 8/21/2009 9:04 AM (GMT -7)   
I've never really had a hard time accepting it or coping with it for whatever reason. I find it kind of weird because I know that most people would definitely have to go through a grieving process because this disease isn't something to be taken lightly. I think when I got diagnosed, I was just so happy that it wasn't something like cancer, that I've really always been fine with it. Sure, I have a lot of bad days and I went through months and months of pain, but for whatever reason I always have just looked at it in interest (asking myself what is causing it, doing research, etc), and it has made me never even think about feeling bad about it. The only thing that worries me in the future is surgery (I haven't been sick for very long), because I don't want scars (probably the stupidest reason to worry about surgery...I have always worried a lot about my physical appearance even before diagnosis), but the guy I'm seeing right now put it really well - he asked me why I would worry about that when things like childbirth can give you scars/stretch marks anyway, which is true when I thought of it. I really hope that the acceptance comes for all of you who aren't there yet, I can't imagine having to go through this disease and have to cope with it mentally at the same time.

jamiii sayys
New Member


Date Joined Mar 2009
Total Posts : 13
   Posted 8/22/2009 2:26 PM (GMT -7)   
thank you for all of the replies.
 
I've had a good couple of days so I am doing well again.
I just hope my next bad day doesnt put me in such a negative mood.
 
Trying to stay positive.
:-)  

Escalador
Regular Member


Date Joined Jul 2009
Total Posts : 103
   Posted 8/22/2009 3:56 PM (GMT -7)   
I reffuse to accept that I am somewhat different now that I have this disease...
although some of my peers with this disease have quit college and their studies I've, while having a flare up decided to enroll in my 2nd college... soon I will have 2 degrees
Learn to addapt to your disease and FIGHT to keep your life...
everyone feels down sometimes... thats ok, but try not to feel bad all the time... remember the wisdom of Van Wilder when he said: Worrying is like a rocking chair. It gives you something to do but it doesn't get you anywhere.

tsitodawg
Veteran Member


Date Joined Sep 2006
Total Posts : 845
   Posted 8/23/2009 3:50 AM (GMT -7)   
There is nothing to be ashamed of in admitting that this disease is terrible and sucks. Valerie, I am glad that you are accepting your disease in such a positive manner and I don't mean to sound mean or rude, but there will be days or weeks in which even you will have a hard time dealing emotionally with this disease. When I was first diagnosed, I too was overjoyed at the thought of finally have some sort of answer to why I was feeling sick and that it was not all in my head. My G.I. was not the most informative one and just said well you have Crohn's disease and instantly started me on Remicade. I had been hospitalized for almost 3 weeks at that point and had no idea that my journey was only beginning with this disease.
When I first started my infusions, I would laugh with the staff and have a great time each month when I went in. I would get sick still, but the medicine was doing what it was intended to do. Then came the time that it began to not be as effective. First it stopped a few days before my next infusion, then a week, 2 weeks, until it was only working for a few days. We tried everything with combinations of 6-mp, methotrexate, you name it we tried it to prolong the remicade. This went on for nearly 4 years and as I got sicker each month I too became disassociated with many of my friends and family and began to recluse some due to be embarrassed. I had to go on full time disability and again it took me just a little bit lower. I tried Humira, failed. I am now trying Cimzia and not doing much. Little by little this disease can whittle away at your confidence if you let it and can even make you forget who you used to be. This is where you have to step in and say that you are taking your life back.
I have had a total of 8 surgeries and numerous hospitalizations and procedures since I was diagnosed about 5 years ago. There have been times that I have been so strong and times that I have been lower than low. This is completely normal and Valerie and all you newly diagnosed members, prepare yourself for it now so that you can know how to overcome the low. Force yourself to get out on some days when you are more emotionally down than physically down. If you are in pain, admit it and talk to you doctor about some type of pain management program. Too many of us avoid pain medications due to the media and the thought of what others may think of you if you take them. I tried to cowboy up for about 3 years and take the pain and even after surgeries when I had to take meds, there were people that would call me a pill junkie because they saw me always have some sort of medication on me. I finally said that I do not care what others think and I am sick of living in pain and am now using pain meds under the close direction of my doctor. We are looking as to another way to not make my disease active and find the source of the pain, but in this day and age why should one suffer.
This also applies to those that are suffering from depression. If you need help, it is totally acceptable to seek counseling from a professional or spiritual leader inorder to achieve some inner peace. There are many methods of doing this and if medicine is involved, do not feel embarassed or let other berate you for it. You are living with a disease and only you can take charge of your life.
Escador, while I agree with your same theory that you are the same person now that you have Crohn's as you were before, I do feel that one needs to also accept that they have limitations that are different from before and adapt. I too was a student when I first was diagnosed, but there was no way possible for me to continue schooling at that time due to hospitalizations and surgeries. I have had to return to studies off and on and also change my degree to work with my disease. I think that it is great that you have been able to achieve so much despite your Crohn's but there will come times in which you will have to change your life. It is all part of having a chronic illness and accepting it. It does not mean that you give up but more that you conform to a way of life that is going to help you live a more healthy and active lifestyle. I am a hunter and used to hike for mile while carrying my heavy rifle, but now with my arthritis and despite only being 29 years old, there is no way I can hike like that anymore. So I still hunt, but have purchased a 4 wheeler ATV and do most of my hunting from it. I may not get to the same mountains that I used to, but I have found places that I never would have if I had not opened my mind. I easily could have given up hunting but will do it for as long as I can. This is accepting my disease and learning to live with it.
The best thing that you can do to learn to live with this disease and accept it, is to do research and learn all that you can. If you are prepared than you will not fear. I live by the motto: If you fail to prepare then prepare to fail. Knowledge is your bestfriend through this trial.

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 8/23/2009 6:06 AM (GMT -7)   
I have had this dd for over 30 years and I will tell you thats it really a cycle we go thru. I get angry and depressed still when I start feeling bad. But on my better days I am back to being the same happy person I usually am. As I said I see it as a cycle.

Hugs
Gail*Nanners*
Gail*Nanners* Co-Moderator for Crohns Disease and Anxiety/Panic Forum
Crohn's Disease for over 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium  w/Vit D, and Xanax as needed. Resections in 2002 and 2005. Also diagnosed with Fibromyalgia, Osteoarthritis, and Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
It's scary when you start making the same noises As your coffee maker.
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

tsitodawg
Veteran Member


Date Joined Sep 2006
Total Posts : 845
   Posted 8/23/2009 3:07 PM (GMT -7)   
Well said nanners. Cycles, phases, or however you want to phrase it we all will have ups and downs. To say that you have not been a little bitter or depressed and then to say that you have fully accepted having Crohn's is not realistic. There are too many highs and lows to say that. It is part of accepting it by going through the lows. This is where we find out how strong we truly are and what we can handle. The first while whenever I would have contant bloody stools or abdominal pain, I was either in the E.R. or on the phone with the doctor. Now when I have bleeding or abdominal pain I know what to watch for and I know that I am not going to die so why panic. If it is terrible pain then I may call my doc, but no more late night E.R. trips to doctors that know less about this disease and my medications than I do. I can not say that I have fully accepted it or fully understand it, but I am working on it. Just like Nanners talked about her having it over 30 years and still part of the cycle of getting depressed at times. It is ok to admit that we are not like everyone else and it is not a bad thing to make changes in your life to improve you quality of life.

Blossom
Regular Member


Date Joined Mar 2008
Total Posts : 176
   Posted 8/23/2009 4:36 PM (GMT -7)   
Hi jamiii,
 
I certainly understand where you're coming from.  Like Nanners and others, there is definitely a grieving process involved.  Having a chronic disease with no known cause and no known cure is understandably a hard pill to swallow!  I didn't even really believe I had Crohn's for many, many years, until I could no longer deny it due to all the test results pointing to the same thing---Crohn's!
 
And like others have said, grieving can go through cycles throughout one's life.
 
I've decided that the best way I can live my life is to take ONLY one day at a time, and to deal with my Crohn's issues (and actually ALL issues, for that matter) as they arise.  And trying to live in the present moment, know also that tomorrow may be a better day.
 
Hang in there!
54 year old female;
 
Have had Crohn's of terminal ileum for over 9 yrs.   My first small bowel surgery was on 7-30-09.
 
On Humira since Dec. 2008.  Allergic/hypersensitivity to Pentasa, Entocort, and 6-MP.  


frogeleita
Regular Member


Date Joined Jul 2009
Total Posts : 342
   Posted 8/23/2009 10:47 PM (GMT -7)   
thats why i come here..because no where else can someone understand..i am in the mad/crying losing it stage right now...i am so mad at my fistula..so i know what exactly what you mean..pray for a cure!

 crohns/colitis/lupus/hyperthyroidism-seton fistula pentasa cipro flagyl vicodin


It's in the bag
Regular Member


Date Joined Aug 2007
Total Posts : 122
   Posted 8/23/2009 11:14 PM (GMT -7)   
It's hard to have this problem I've found most people seem to think having Crohn's disease just means "you poop alot". Which , while true :) , is just one part of it , as we all know. Friends and coworkers who ask me for details are quite suprised at the extent of what I/we deal with because of this disease. When I'm feeling good and not having problems I am very optimistic about it , very gung-ho "I'm gonna beat this " etc... Then when I have a bad few weeks , go to the hospital for a week or more , and (as of this month ) have surgery I definitely get depressed . I get the "why me , what did I do ? " and all that sort of stuff. But just like the good times gave way to bad....I know the bad times will get back to good sometime and I'll be back at work , back fighting/training , and back feeling like I'm me again. Someone in this thread said "you are not your disease" and that is so true. It's your body...it's hard to fight this disease but it can be done.
Asacol 400mg x 8 dly , 50 mg Mercaptapurine x 1 dly , 40 mg Omeprazole x1 dly , Remicade every 2 months , Multivitamin , Fish Oil ,


ISF13+
Regular Member


Date Joined Jun 2009
Total Posts : 202
   Posted 8/24/2009 11:03 AM (GMT -7)   

My suggestion would be to try and find a crohns support group in your area.  I used to feel like I was alone with my crohns because nobody around me had the disease or even knew that much about it so how could I even expect them to relate.  about 8-months ago I found a crohns support group and I can't even begin to tell you how exciting it was to be around other people living and going through the same things I am.  I look forward to our meeting every month now and don't feel at all alone anymore.

I wish you the best of luck . . .

 


Crohn's Disease. 
Diagnosed 13+ years ago. 
Been in remission for short periods of time but each time I come out of remission my disease seems to have spread.  No longer isolated in my ileum, now from stomach down to rectum. 
Current Medications for the Crohns:  Humera 40mg injections every other week, Imuran 150mg, 3xday, Hyomax, Welchol 625mg, Vancocin HCI 125mg, 4xday for C-Diff, Calcium, Acidophilus & Potassium
Previous Medications I've been on:  Asocal, Pentasa, Cipro, Prednisone, Flagyl & Entocort


fldirt
Regular Member


Date Joined Apr 2009
Total Posts : 30
   Posted 8/25/2009 11:52 PM (GMT -7)   
I have been living with Crohn's for 30+ years & it never gets easier! Friends still don't understand what I have to do to try to live normally. When you know where every bathroom is in the mall or when you travel how many miles to the next bathroom & is it clean!. I don't eat when I travel because you just never know. I kayak & bike so you have to know if there will be somewhere to go if you need too. And usually you do. I tell people what goes in WILL come out & I want a bathroom near. I get up eary so I can have b'fast & still have time for the bathroom. It gets old to be walking out the door to go somewhere & have to turn around go out to bathroom. We plan & plan. They still don't understand...how could they unless they are going through the same thing.
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