Nine Years with Crohn’s Disease

October 24th isn’t a day I tend to celebrate as it marks the day I received my diagnosis for Crohn’s Disease back in 2008.

The date gives me mixed feelings.

I often look back at the last nine years and replay the difficult times in my head. I try to let go of the past, I really do, but the date often serves as a constant reminder that life used to be so different from it is now.

Truth be told, I had a very hard time dealing with my illness before having my ostomy surgery in 2013. It was emotionally crushing and the physical pain I endured for years on end seemed as if it would go on forever.

I tried my best to outwit my illness, to try to avoid medication and surgery, but Crohn’s Disease would have none of that.

In fact, it seems like that harder I tried, the harder it would hit back with an extra bit of, “and stay down!” for me.

During the past nine years, I’ve also learned a lot about myself and the incredible amount of resilience that is inside each and every person who’s dealing with chronic illness.

I know that a large part of the problems I had during the first many years of my illness was because (metaphorically speaking) I was trying to navigate a boat during a storm with the belief that I could control the water. We are all in this boat and most of us will be navigating through the roughest waters imaginable, but we will never be able to control the water – it’s not ours to control! It took me far too long to understand that.

If I could go back to October 24th, 2008, I would do my best to prepare my “boat” for the incoming storm.

A diagnosis doesn’t have to be bad or tragic. Our diagnosis is like a map that shows us the potential for what could lie ahead, but it is NOT the journey itself.

Our journey is rarely known in advance, but as long as we have a “map” and work towards preparing our “boat” through education, peer and family support, the right doctors, and the ability to look forward, then things won’t be as difficult as it would be if we tried to control the waters.

These past nine years have been full of missed opportunities. But knowing that I’ve learned many lessons along the way does make up for a lot of them!

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Patti Mangione
Patti Mangione(@pamangione49)
4 years ago

My girlfriend about a month ago had diverticulitis that also ruptured. She called me this morning to tell me how afraid she is of her upcoming surgery in January. She is praying and hoping they do not give her an ostomy. She knows I have one too. At least she has me to lean on. I told her about your site and feels better after reading many articles about an ostomy and what to expect if it should happen. The doctors will not know until the surgery is performed to see how bad it is. She was in the hospital for a month as she ended up with an infection and was put on antibiotics. She knows she is not out of the woods yet.

Reggie Jones
Reggie Jones(@reggie5401)
4 years ago

Having been a diagnosed Crohn’s patient since 1980 I did tons of “studying”, inquiring about the disease. And for the younger folks, back then you had to go to the library, no google searching like now! Anyway, in my journey I have come to find out that we all have it just a bit different than each other. Some of us never even have surgery, some are racked with Crohn’s flares, like me, some develop sepsis due to perianal fistulas, again like me, and that is when I got my ostomy on July 8, 2014. Still have my rectum as the doctors did not believe I would survive that serious of a surgery while in the hospital for sepsis recovery. So, we all have our own “identity” or issues that we deal with. I am grateful to Eric for his research, experience, reviews, and the forum so we can express ourselves. I have come to value each and every day as a result of maybe not having a “next day”, but due to Grace and surgery I have today. Another thing I would dearly love to mention is the unsung “heroes” for folks like us, our spouses (especially mine, Sharon). What a servant! She has made it so much easier to live with a chronic illness. The surgeries, the pain, the messes, the hurting husband, the diet issues, the relational issues of living with someone who at times can experience bouts of self-pity. A true servant, and never, never, one complaint, just love and support. We in this forum have a wide variety of experiences, a common one being stoma’s and appliances. Eric has provided great education in both areas, and other areas of sharing his experience. Sharing is healing. Best wishes to all of our fellow ostomates!

4 years ago

30 years with ulcerative colitis
One year ago I had an ileostomy due to cancer discovery. I had colonoscopies done every year for 20 years. So I thought that when they discovered a tiny cancerous tissue that I could simply have it removed but my bowel was so badly compromise from years of UC it was not possible. I’m back to living a very active life despite the fact that I have to empty every 2 1/2 hours. But what the hell when I had UC I had to run to the toilet more often than that. I am grateful to Eric for his efforts. I have learned so much about my new way of living from reading his material and from sharing experiences. Thank you all.

4 years ago

I too deeply appreciate your words. As John said, you have been a light in the darkness and I am certain you have saved many lives, I know that finding you and these forums has given me a healthy place to both laugh and cry. My diagnosis was diverticulitis that was near rupture, hence emergency surgery. I don’t think this as bad as your Crohn’ s disease, but combined with the other debilitating autoimmune diseases I have, with constant pain (mine has been since November 1975) has many times been overwhelming. Then with what feels like a violent violation of my body I was over the top. Although not Vegan (but I am thinking about it) your site and forums have been a lifeline.
Bless you, and thank you from my heart to yours.

Steve Taylor
Steve Taylor(@tayman094)
4 years ago
Reply to  Barbara

I too had diverticulitis that did rupture. I laid in bed for two days hoping this spell would dissipate. It did not. My wife convinced me to go to the hospital where a CT scan showed a perforated colon. Emergency surgery and a colostomy placement resulted. Four months later what was supposed to be a reversal, due to complications I did have the colostomy reversal, plus another big incision, another resection, and an ileostomy. Another four months later I had that reversal, six months ago. Thanks to Eric and one of his product reviews, I purchased a roller tool which helped greatly with both ostomys. I still have “issues”, but they don’t require surgery (yet). Although I am six months into reversal, I still save Eric’s emails, as I find his articles fascinating.

Crystal A Moore
Crystal A Moore(@tiregoddess1)
4 years ago

Having been diagnosed with Crohn’s almost 30 years ago, I definitely identify with what you have said. My ileostomy was almost 2 years ago. Looking back at my journey I realize my life may have gone differently if I’d have had the ileostomy years ago. But it took a rectal/vaginal fistula to get me there after 2 years in an extra hellish place. But I don’t think I’d change anything, because at the age of 65 I am a much more grateful, solid, positive person. Thank you so much for the work you do for all us Crohn’s patients.

4 years ago

Eric, I hear what your saying and relate to it. the most important thing you said is you learned a lot about yourself! Some life events we can control and some we have to let happen. I tried to block out my illness worked on when I should have been in hospital and have looked back and thought had I been seen to sooner may be I would not have an ostomy. That was never going to be the case. This illness not only changes our life but the lifes of those around us.I have seen relationships break and some made stronger! Certain events bring out something inside that may not have other wise happened and turns out to be a force for good. The cruel events that over took your life have put you on a journey that has changed many lives and may be even saved a few. I heard an old guy say greet every one with a smile and a kind word, you don,t know what they are going through and you could be the difference. Was Eric without an ostomy a worst person, some how I don,t think so! The 24/10/08 not only changed your life but many others.