Community Forum

I am really struggling here. I have had Crohn's for 8 years, and it has not been an easy road. I'll be 27 this year and the idea of having to live with this the rest of my life makes me so angry and frustrated. I'm not sure how to deal with these feelings.

I have chronic pain that I struggle with everyday. I got to a point where I was tolerating it fine, but then it started to get worse. CT and labs all look normal. I just have this pain. It doesn't matter if I eat or stay on a strict clear liquid diet, theres pain. I think the part I struggle with the most is that there is nothing anyone can do for me. 

I have to cancel plans all the time, it affects my work, school, and social life. I'm fortunate enough to have people in my life that are understanding, but then I feel like such a burden to them. And then I'm angry. I thought that over the years, it would get easier, but my feelings and struggles are only going downhill. I am really terrible at managing stress and that doesn't help as we all know too well. 

Does anyone have any suggestions? I'm not religious and don't plan on becoming so. My shrink said I should see a hypnotist for chronic pain. 

I too can understand the anger.  I was diagnosed with crohns in Jan 2010 and got poor medical choices by my doctor so got really sick fast and had my first surgery April 2, 2012 which ended up being a bowel resection and temp ileostomy.  3 months later i had the take down surgery for the ileostomy.  It sucked.  After that I was told my crohn's was under control but I was really sick all the time off and on again.  So after almost 2 years they discovered it was my gall bladder acting up and so had that surgery about 3.5 months ago and found out I have a lot of food intolerances and so have been on a very strict diet since.  It seems to help some, but doesn't take away all the pain and doesn't really have much that tastes good.  
I understand the anger because it has been catching up with me the past month or so.  I think I should be over dealing with the anger for having to face dealing with this for the rest of my life.  Even when I'm not sick all the time its still overwhelming.  So you are not alone.  I'm up at 4:30 am because I can't sleep tonight from the anxiety and depression- my depression has been really bad again, after getting it under control again.  There are no real easy answers.  Try to do things that you enjoy, and talk to those you love.  Counseling might not be a bad idea either.  Its helping me to be able to talk some of it all out.  
Hope your doing better.  I too am 27 and find as this should be the time in life to really be enjoying everything its hard to do with this stress hanging over your head.  

 Reply posted for TakesGuts221.

I understand completely!! This disease is so horrible. The only thing I can tell you is to try to get rid of the pain. (Try the SCD DIET)  I was diagnosed last March and I had pain constantly in my ribs and chest. COULDN'T STAND IT. I learned about the SCD Diet and Breaking the Vicious Cycle. With the help of that diet and www.Crohnsdad.com it really made a difference. For the most part I do not have pain anymore and you can actually lead a normal life. Now this diet or way of life is not easy and you have to stick to it. After you heal you can add a few things back into to your diet (maybe sweet potatoes or rice) but you can never eat the way all of us use to eat before diagnosis. Basically you eat meat, grass fed, seafood, veggies cooked, homemade yogurt, and fruit in moderation. Nothing from a can or prepackaged.
Definately research this. Also go to www.NOMORECROHNS.COM. She also has Crohns and is young and is on the SCD Diet. You will be amazed.
It's better than meds that make you sick and all the side effects and you are not feeling any better and still canceling out on life, so there is nothing to lose.
Good Luck.
MJP

 Reply posted for TakesGuts221.

I suffer from UC, and lately I have also been struggling with anger (and chronic pain). I started taking a mindfulness meditation class, and at first I was very skeptical, but as the class continued I found it very helpful.  The techniques taught in the class have been very useful for dealing with pain as well as stress and anger.  Good luck, I hope you find something that helps!

 Reply posted for carolgeb59.

As much as you can, try to communicate with your family and friends what you need in terms of support. Sometimes, they really just don't understand how much of a DAILY battle this can be. Keep trying to reach out, though! All while retaining your inner strength: having that core to fall back on when times get hard is a skill that all of us need to work on developing. Please keep talking to us here, at least!

 Reply posted for TakesGuts221.

I have UC and my so called friend said I should go thru a health specialist not a doctor.  Well, I did and I bled anyway.  I am taking Imuran and sometimes I do bleed but not much.  I am better but I feel angry too.  My family really does not understand but they are trying.  My so called friend said well I DON'T HAVE A DISEASE LIKE YOU DO AND THEN SHE LAUGHED.  I told her that she hurt my feelings and it sounded very rude.  She said she didn't mean it that way.  I do not believe it!  I find that socializing helps and taking walks helps me.  Do some yoga.  Buy a tape or take some classses.  Do some gardening and rent a good movie.  Stay busy.  As far as food goes when you are out like at a family get together, I bring my own stuff and they barbecue it or I have it already done and I eat at the table.  It makes me angry when I have to do that and would rather stay home but I do it any way because my family is important to me.  I think of it this way, a lot of people have food allergies and they have to eat certain things so I am not alone!  I hope I have helped you some.  You can email me at crlgebhart@gmail.com