• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.

10 years down and glad I found this forum!

Hi guys,

Very excited to find this forum and thanks to all who have built it up to where it is. I'm a 27 year old guy from Kansas City, currently in DC where I just finished a Master's at Georgetown. I've had Crohn's for 10 years and only been in remission briefly once a couple years ago. The other 9.5 years have been pretty much one long flare, though a lot of the time I've lived my life as though there was nothing wrong with me-even doing the Peace Corps in the middle of a bad flare a few years ago. It sounds crazy but I guess when I was younger I never wanted Crohn's to ruin my dreams (or make me different).

I never ignored it though-I've tried my fair share of treatments (prednisone, asacol, lialda, imuran, humira, pentasa, rowasa, canasa, entocort, cipro/flagyl) and supplements (VSL-3, Cats Claw, Aloe vera juice, and many more that I can't remember). Most haven't even made a dent and none have put me in remission, with the exception of a prednisone/imuran/VSL-3/glutamine combo and doing almost nothing but sitting around the house for 4 months. Unfortunately, the remission was short-lived and the combo quit working.

I also think I have a fairly unique case-I was diagnosed with UC in the initial years as the extent of the disease never went much further than 30cm. However as time went on, doctors began to say the ulcerations were much too deep to be UC and now most doctors agree it is a unique form of Crohn's (though I'm still technically classified as Indeterminate colitis sometimes).

Other things I've always been curious about-I've never really lost weight due to Crohn's except while I was in the Peace Corps (where I was sick as a dog and also had a very limited diet due to my placement in a rural villiage).

A typical day for me is 15 bloody BM's (range of 10-25) and this has been pretty consistent for the last 7 years but I've never been hospitalized due to Crohn's.

My dad has Crohns but has had a completely different experience-getting it in his mid-40's, with an extremely severe onset and subsequent hospitalization and multiple near-death complications.

While I absolutely don't regret the way I've lived and dealt with Crohn's until now, I also know that as I'm getting a little older, the little things in life (like feeling good) are taking precedent over the things my more adventurous younger self used to value (backpacking, traveling, partying, sports, etc.). I'm also more comfortable admitting I have a debilitating disease than I used to be. I still tell relatively few people, but I'm embracing it more (though trying to do it always in a productive way). I helped run the Take Steps walk in Kansas City a few years ago and since have been increasingly interested in meeting other people with Crohn's and UC (I hadn't even known about support groups or anything like that prior to doing Take Steps the year before I volunteered to help).

I am also an extremely curious person and when I get interested in a topic I research the hell out of it; Crohn's is no different-I've been in spouts of research since I was diagnosed. I am extremely luck to have recently joined a clinical trial on the effectiveness of using Stromal Cell therapy to heal the mucosal lining of the bowel in IBD patients at the National Institute of Health. I'm the very first (and only, so far) patient to participate and it has once again peaked my curiosity about this mysterious disease.

The combination of these things and the possibility of helping others have led me to this forum. Currently, I am very interested in bacteria and yeast's role in Crohn's (I always feel 50% better after a 10-day dose of cipro, but it only lasts for 2 weeks or so. I also continually struggle with yeast infections in my ears and mouth and don't think this is coincidence); treating inflammation and pain with medical marijuana (I've always been interested but never been a huge fan of it personally and was always weary of the medical benefit claims of cannibas as a wonder drug for every ailment by proponents who seemed more interested in getting high than anything else-however, now am very interested in high CBD strains that seem to have helped a lot of people); and of course cell therapy as I'm in the NIH study.

Lastly, in addition to this forum I have recently found another very useful and cool website: (Can't post the link I guess as I'm a new user, but I'll talk to the forum moderators to see if one of them can, or just message me). Many of you have probably used it before but I was pretty amazed at the wealth of crowd-sourced information available there. It's still in its startup phase but seems to be a promising project that aggregates Crohn's and colitis patients experiences (w/ supplments, diets, medications, lifestyles, etc.) and then rates them based on positive responses-I was amazed (and somewhat disappointed;) ) that "No-beer" was the highest rated therapy. Anyways, hopefully some of you may find it useful.

I'm very open to sharing thoughts about my experience with those more recently diagnosed or whoever and hope to give at least some of the value back that this community has given to me. I can't really say I have any answers but maybe there's somebody out there that has a similar case of Crohn's or even just the same stubborness I've had in accepting they have a debilitating disease. Whatever it may be, please feel free to reach out. And thank you forum moderators for putting your time into this community!

-Colby
 

David

Co-Founder
Location
Naples, Florida
Hey there Colby and welcome to the community. Thank you for taking the time to share your story :)

In your list of medications you've tried, I notice that none of the biologics are included. Have you tried any of them?

All my best to you.
 
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