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I am 26 years old and have had Crohns for 10 years. I have not yet been in remission every year my Crohns seems to get worse!! I have tried every medication... last year they removed my colon and rectum and gave me a J-pouch. This year I have had 2 surgeries and need another one on a fistula. I just seem to be getting worse and worse. I am naturally happy person. Most people cannot believe how well I handle being sick all the time. But the last year I have been kinda depressed. When I was on steroids I seemed to feel so much better and could keep up the act. Now that they do not want me taking steroids I cannot seem to get moving again. I just feel down. I keep doing everything the doctors tell me to do and I am not getting better. My boyfriend has stuck by me so far but I feel bad because I never feel like doing anything. I work and come home and sit in bed with the heating pad! My stomach cramps are so bad that I dont feel like I can do anything. They put me on pain medicine and I am afraid I will become addicted to it. I asked my regular doctor for depression medicine and she doesnt think that I am a depressed person that I am just upset from dealing with my disease. I am tired of feeling sorry for myself. I am tired of having to go the bathroom a million times a day. I am tired of not being able to go because I feel to sick. I am tired of missing work for treatments. I am tired of everything!! I need to get over it. I need to keep living. What should I do? How can I deal with this? Why am I not getting better? I am on 6mp, Lialda, Remicaide, among other things. What else can I do? Has anyone tired other methods (yoga, acupuncture,etc) that have worked for them? I dont know what to do! 

 Reply posted for Mistylynnd5.

Yes, it can get frustrating and overwhelming, and make you tired of it all.

I would definitely recommend seeing a counselor that has experience dealing with chronic illness/pain.
I have been using accupuncture, massage, chiropractic, and reflexology for about 8 years to help keep the body feeling better. For me it makes a huge difference in pain, discomfort - and I get a huge emotional boost from taking an active step to healing < and I also enjoy the time with practitioners that I like & respect>.
Remember, you have to live in your body.  Treat it with love and care, and do things that benefit you emotionally as well as physically.  Hang in there, do some work, shift your perspective; and you will come to a new place.
Love and best wishes!

 Reply posted for Mistylynnd5.

please dont allow your ignorant ( lack of knowing ) dr to tell you what you feel. crohns takes a lot a lot a lot out of a person. there are only two things that help me with feeling down. Mary Jane and God. Mary Jane helps with appetite, it helps with pain, anxiety, depression, etc etc etc. ive had crohns for 11 years and ive been smoking for the 11 years having it.

 Reply posted for Mistylynnd5.

Consider prednisone, lomotil, and gluten free diet. My solution. 44 years with Crohns. Have taken prednisone for over 30 years!

 Reply posted for alanschachter.

Thanks everyone for responding! I have never heard of LDN before or the Gaps Diet. I will talk to my doctor about both of them. It is nice to know that I am not the only one with these problems. 

I have been taking Tramadol and it does help. Without it I would not be able to work full-time. I am still in a lot of pain. I have only been taking 1 every 6 hours maybe I should take more. I don't like when my head feels fuzzy. 

 I know stress plays a big role in my disease. I was a teacher and I got so sick that I had to take a job as a Teachers Assistant. I am now trying to finish my master's degree so I do not lose my teaching certification. I have so many loans that I can't stop now. So I am working full-time and going to school part-time. I already had to drop out of school for awhile because of all the surgeries I was going through. I ended up switching to an online college (this way I don't have the extra stress of working all day and then being at school all night). It was too much for me. 

I already feel a little better joining these chat rooms . I like that someone is listening. My family is supportive but since I haven't gotten any better in the last ten years they really don't want to hear me complain and know longer know what to say. 

Thanks for your support. 

 Reply posted for alanschachter.

Yes, would you please provide me with those online pharmacy links. And, Crystals contact info. I opened a Facebook account for the sole purpose of getting more info from you about obtaining LDN and sent you a few messages, but you never replied. That is why I spent so much money trying to find a script on my own, which I never found. I hads to fly to S Medical Center and the clinic. In addition to pay for the appointments. Neither facility nor my local GI would prescribe the LDN.  I appreciate whatever info you have.

 Reply posted for alanschachter.

Yes, I clearly understand that Tramadol and LDN can not be taken together. Thank you for pointing that out.

I was simply just saying that I have always been adverse to taking meds for this illness (some of which have caused me permanent long term problems) but I finally decided I wanted a better quality of life. Also, the LDN is very difficult to get a hold of. Skip's Pharmacy gave me a lead of someone who has a national list of doctors who are willing to prescribe it. (I spent over $1000 and tons of time trying to find someone who prescribes it, it is NOT EASY!!!!!) So, until I get a script for the LDN I will take Tramadol and when I get a script for LDN, I will discontine the LDN. I am certain it works great, however I have severe degenerative arthritis in both my ankles. I had my left one fused about 6 months ago. I am uncertain if the LDN will work for the chronic pain I have from that whole issue.

I agree your with your approach Alan, it is the best I have seen yet. But, again you must respect the fact that it is for the general populous of Crohn's patients. Everyone, like me has different situations. I just wish i was newly diagnosed and had discovered your system before I took all those years of heavy meds that ruined the rest of my body. It makes me severely depressed sometimes. That is an entire different issue that the LDN and diet will not change. I can not get new ankles. And some people with colectomies and such can not get those body parts back. 

 Reply posted for Mistylynnd5.

The illness will definately make you sick. I clearly understand. What I am trying to say is your lifestyle can make it much much much worse and you don't even realize why you are so sick. Life is short. Slow down! Go work outside at a golf coarse for a low wage or bag groceries whatever it takes to give yourself the much needed break you deserve. I tried many antidepresants but they only messed my guts up. The testosterone has helped a lot. Because, you are female I don't know what you need but I know you need to find that thing (a pet like a dog, a medication, whatever it is) that uplifts you and brings you back into a healthy state of being. I wish you the best of luck! It is easy to find success and happiness if you shot from the heart you hit the bullseye everytime. Start listening to your heart and only do things that uplift you and build your strenght. DO NOT DO THINGS THAT DRAIN YOU AND BRING YOU DOWN. You can't afford to do those things, you have Crohn's!

 Reply posted for Mistylynnd5.

I am sorry to hear about where you are at currently. I can relate inso  many ways. 20+ years of Crohn's with very little time in remission. Very frustrated and depressed lately because of my circumstances. I am currently working my way out of this depression. Listen to Alan and kicking they both have good points, especially get in contact with Alan and try the LDN. I was having a very bad time getting going and once I put my defenses down and started taking Tramadol for pain I could get around better and sleep better. Alos, it halped a lot with the diareah. I spoke with the pharamcist and it shouldn't be as addicting as you think. I do not beleive it is a narcotic. I also found out that my testosterone was low ( I am a male) my doctor started me on that and it was like a dark cloud was lifted. I have so much more energy and I smile and laugh more. I just feel better. My point is you need to find the right combo of things, a routine of daily activities and meds that start getting you back to being as healthy as you can be. I started by walking away from a career that cost me $75,000 in school loans and over $200,000 in lost income while going to school. Are you brave enough to find an income and lifestyle which isn't so stressful? It took me all the courage in the world to be brave enough to follow my bliss!!!!!!!!  

 Reply posted for Mistylynnd5.

       I'm sorry to read "the facts" about Cronh's disease. I, also have Crohn's and currently taking Entocort -steroid + Assacol + 2 surgeries  in 2008.
      2010 was tough for me. I was in depression due to 4 deaths in the family and saw a child living on bypass for 3 days. It was tough, stressful, and I was in pain. Steroid was added into my daily cocktail.
       How did I walked out a depression? I went to church, support group, and call friends, but nothing really erased "the facts." At the end,  I'm doing things that I never done in my life and I succeed. I feel accomplished so much, then without anything special, I was out of stress and depression. Can you challenge yourself like me? I went to ski for the 1st time in my life and I felt great. Can you name few things that you always would like to do? How about go swimming or hiking?

BTW, venting is a positive way for stress management!