Community Forum

I am a 45 year old man who was finally diagnosed 6 years ago after years of being told there was nothing wrong. 

I was on Humira and later Remicade. Neither worked for me with varying degrees of terrible side effects. For the past few years I have been "managing" my crohns with pain meds, Pentasa and steroids as needed. Crohns has reared it's ugly head again in a more consistent way and I am now embarking back on my medical journey with a new doctor in a new place, Puerto Rico. 

Overall, I am anxious about the return to doctors and seeking help. I am defeated by the lack of options that work for me and don't feel hopeful about all of them. 

i am curious how many other people have been severely effected by this journey? Myself, in am now under employed because my health is unpredictable. I am exhausted all the time and often have a bad belly to put it gently. 

I fee sad about what I feel I lost or was unable to realize in my life due to my disease. 

that coupled with people not taking crohns seriously has been devastating. it makes me feel like I am the only person out there who can't function with crohns. 

Reply posted for Chicluv35.

I know these diseases affect everyone differently. I have Crohn’s, and had colitis and the colitis was much much worse than the Crohns. With colitis I could not keep food down, had to have multiple blood transfusions and finally had my colon removed.  The Crohns, while nasty, has not been nearly as bad.

Reply posted for LeslieCanadian.

That was a great read. Very inspiring 

Thank You!

Reply posted for badbelly.

I myself have colitis which is a milder form of crohns but i cant work cuz my flareups get bad i am taking Sulfasalazine right now i grew antibodys to humira and i am allergic to stelara so i dont even want to risk trying remicade and my dr wont keep me on pain pills. I just found out that my colitis is why i could be tired all the time i just want to sleep all the time. I just feel so unhelpful that i cant help my parents with bills. I have come to realize i also may never be able to live on my own.

Reply posted for badbelly.

I too have had some rough years.  But after a decline that i thought was going to kill me, this past years have been amazing!  

I was unable to walk even a block for about a year, unable to lift my arms long enough to wash my hair, unable to care for my own small children as well as a normal parent, unable to drive, sleeping 16 - 18 hours a day, unable to work and didnt qualify for employment insurance. The Drs didnt have answers for many of the symptoms I had.  I was in and out of the hospital a lot. Nobody around me was sick, nobody understood.  At all.  I felt isolated and useless and a burden to everyone. 

My healing started when I was so sick of being sick, I changed my mind and decided to never give up.  I thought "why die before I die?  I will do my best and if it works, I can encourage other people.  If it doesnt, then at least I will die knowing I did everything I could!"  

I looked everywhere.  tried everything.  spent all my money and time.  I tried acupuncture, various diets, suppliments, chiropractic, nutritionist, naturopath, asacol, steroids, clinical trials, enivyo, yoga, meditation, prayer, chinese medicine, and more.  Some things did nothing.  but some things did a little bit!!  And I built my health brick by brick.  Today I live with crohn's disease and primary sclerosing cholangitis (plus cancer but that is gone now), and I am in complete remission, with very managable symptoms.  I treat the appointments at the dr as a distraction, and a chance to do things like write this post.  The rest of my days are spent hiking in the mountains with my kids, climbing at the indoor wall with friends, dancing salsa with my new spouse, and enjoying my life 100%.  

I reccomend you start with altering your life to your condition, like getting a job that you can sit down at, taking up activities that you CAN do (for me I started with gentle yoga, painting, and walking a block with a helper to hold me up when needed).  Write letters to people, paint, do research, learn a language, start something FUN.  Second I reccomend you build a social circle.  even if its someone you talk on the phone to, or laugh at comedy shows with, there are people around you who will want the company.  Third, find how you can contribute.  Maybe you call elderly people to chat, or bake something for the neighbors, or visit animals at the shelter.  It will show you how valuble you really are.   And lastly, never ever give up looking for ways to build your health.  you CAN do it.  I did and so can you.  one brick at a time.