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What does remission look like?


Thu, February 13, 2020 8:42 PM

I've had a diagnosis of Crohn's disease since I was 17, over 20 years ago now. I've had 2 bowel resections and some brief periods of low disease activity afterward, but my disease has been steadily worsening over the past 10 years, so much so that I don't even remember what remission might look like. Have you achieved clinical remission? For how long? What does that look like for you? Are you completely symptom free or just have reduced symptoms? I'm starting some new treatment soon and am trying to get hopeful about the possibility of feeling better.

FPO r3bags
Joined Dec 9, 2008

Thu, August 20, 2020 12:18 PM

Reply posted for r3bags.

I have been in remission for about 5 years. My life looks very diffrent then it did 6 years ago, I have delt with crohn's disease for 14 years and I will never forget how poor my quality of life was. Now I have normal bowl movements, no flares, higher energy, and i'm able to live a full life. something i thought i'd never be able to do after my resection surgery. I am currently on no medications and i acheived this by making food swaps to my diet and consuming certain herbs. Remisson is a marathon not a simple race.It does take time with the proper diet and herbs. I recently made a youtube video on the food swaps i made that helped me control my symtoms. I don't know if this could help you, but I want to share just incase it does. https://www.youtube.com/watch?v=_MWksa0kM4o&t=88s

FPO Diamondmercedes
Joined Aug 20, 2020

Sun, July 19, 2020 1:01 PM

Reply posted for r3bags.

For me, remission has been a complicated state. I've had to mix traditional and natural medicine and diet, and still experience mild symptoms. There are clearly huge advantages to life in remission. The biggest differences for me were time and energy. It felt like I had more hours in a day than I knew what to do with and I began exercising a lot just because I could. Professionally things just felt easier with all that energy. But remission is not cured. In some places paying for your medication presents new difficulties. Living in remission also means potentially falling back to uncontrolled flare ups. And it may mean having to work through issues you couldn't worry about during active periods of your disease. I think in short, remission is being able to live in a bigger world than coping with an active disease. What you'll find in that world is ultimately a personal experience. But to me freedom from my worst Crohn's symptoms was a lot like being released from a prison: not without difficulties but very much better.

FPO Schl0488
Joined Jun 4, 2020

Sun, April 12, 2020 12:20 AM

Reply posted for r3bags.

My experieneces with remission have been mixed.

I was diagnosed with Crohn's disease in 2010.  I took remicade for a year and was able to eventually switch off of biolics with the help from a Natruopath I was seeing. During that time I switched to a specific carbohydrate diet which helps reduce a lot of the inflimmation. 

I've done a number of alternative therapies over the years which have also helped me understand the psychology and beliefs surrounding my disease.  Finding emotional acceptence is probably the hardest part for me. I still have a lot of shame and self blame about my limitations. Even though I can function okay in the world, I usually feel like I'm living with a disability that makes me feel like a senior citizen rather than a 32 year old. It's hard to know if I'll be healthy enough to be employed for a long period of time. 

I'm still financially dependent on my parents, which also creates guilt and shame that I have to work through to accept.

Right now I am making okay progress to start a career as a software developer, since it is one of the few jobs I think I can reliably do when I feel sick.   

Finding good chemistry for sex and romance has not been very attainable for me. It's difficult to project confidence and all the related emotions when my body is doing all these things out of my control.

Sometimes I dream about moving to a retreat center and having a more relaxing life where I don't have to worry about medical bills or my job when my body falls apart. 

Other times I think about buying a tiny home and moving to a smaller town where I would not have to worry about the high cost of living in Seattle. 

My biggest fear is not being able to afford my health care costs and rent, food, etc So I have been trying to think constructively about ways to improve my confidence and mental outlook so that I feel that I can live a good life even if I'm never relly healthy enough to work a full-time job.


FPO lucasb
Joined Apr 11, 2020

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