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I was diagnosed with Crohn's disease not 48 hours ago. I have been dealing with living in pain for 2 years now.  With all that life was throwing at me, I didn't get it taken care of as soon as I should have. I excused it as stress, as menstrual pain, as whatever I could to avoid the doctor. Well, Thursday I went in and got an endoscopy and a colonoscopy. The doctor said he could see the inflammation from the top of my stomach and the pictures of the ulcerations in my colon were traumatic to see. He gave me a script for prednisone and Lailda.

Steroids scare me because I have seen my mom one them to manage her RA and the side effects don't seem worth it. Yet I am afraid not to take them at this point with how bad the inflammation is.  I have decided I'm not giving leaving my body to this meds tho... I live in a medical marijuana state. It is how I have managed the pain as long as I did. It seems like anything I eat, even just rice and chicken, causes so much pain. I am feeling really hopeless that I can do this on my own. My mom was with me and my boyfriend knows, but they seem to just bad mad at the world about it instead of believing that I can handle this. They both have auto immune diseases and I know that are just sad I am sick too. But this isn't going to kill me! I just have to figure out a new way to live! 

I have a follow up in two weeks to see how the inflammation is getting handled. But I don't have time to sit and dwell on it all. I work two jobs and run my own business. I don't know how to distress and relax. I don't know how to feel about being diagnosed with a life long disease and I don't know what steps are next for me. I guess I am strangely relieved to at least know...at least know why I am in pain, why I have to run to the bathroom, and where the depression that seems to be setting in comes from. 

How did you handling finding out? How did the people in your life react?

 Reply posted for warington.

I was diagnosed UC earlier this year in June (had symptoms since early April). After my original colonoscopy my doctor told me my inflammation was minimal and in different areas which caused him to call it indeterminate colitis. Prescribed me Apriso (4 tablets daily) and Canasa (once nightly) until in remission, which came quick... maybe about 2 weeks. 

It is tough, and still is, to accept that I will have to deal with this forever with the uncertainty of how bad my condition could become or how that increase in severity could affect my life. Currently, my conditions are minor but I have been feeling around a 8/10 for some time. Overall, I feel great and healthy but I feel a little inflammation down low from time to time and depending on what I eat, alters my symptoms. At first this diagnosis scared me but after getting in remission so quickly and staying there for about 2.5-3.5 months i thought I could handle it easily. I think as time goes on, I have become more accepting of this but then again my condition has been minor. I think if and when things progress, the anxiety will set in for sure but time will tell. 

I am all for diet being a good start to see if it works for you. Don't expect it to work so quickly as some people need to try something like SCD or AIP Paleo for months before they see any improvement... as for me, I saw improvement within weeks and notice now when I stay aware from foods that have seen to cause issues (dairy, wheat, gluten, eggs) that I can almost feel and seem like nothing is wrong with me. 

Read into leaky gut syndrome, I think you will find it interesting. Read into the initiatives and research being funded by CCFA like the microbiome initiative, for it is also interesting and hopeful. I take supplements to help heal leaky gut and think they have been working well for me in addition to my medication which me and my doctor have decided upon for now. 

Best of luck to you!

 Reply posted for warington.

Hello,

I was diagnosed with Crohn's 30 years ago so I didn't have the advantage of having forums like this when i was first diagnosed. 
I had never heard of Crohn's until i was diagnosed with it.  I was shocked when I was told about it and i do remember my family being puzzled about it and how i got the disease.  I recall when I was first diagnosed and my disease was active I was not able eat either and lost the weight that we all lose in the beginning. My late father had issues with it until he realized what the disease was then he accepted it.  The rest of my family accepted it right away, but the hard part for me was giving up so many of the foods I enjoyed such as fruits and vegetables. I can tell you that stress is a big trigger for anyone with Crohn's.  

Good luck to you.