What happened to David and many of the old members?

[Crohn2357]

The forum used to be very active. @David @hugh @D Bergy @mf15 and others come to my mind. Where are people? When they have issues with Crohn’s, do they post elsewhere? I’m interested in learning where people post to interact with, and learn from the other CD patients.

 

[Crohn2357]

A decade ago, search engines used to show forum posts at the top and much more often compared to how it’s been for the last ~ eight to five years. This is one of the main mechanisms behind the fall of activity in online forums.

 

[Cross-stitch gal]

I admit that I went away for a bit, partly cause I wasn't doing too bad. But, when I was told that my Colitis was actually Crohn's and that I was going on biologics I started looking around again. I was very thankful to hook up with scottsma again and others too. Just being able to be back kinda helps!!!

 

[scottsma]

I've been here since 2012 or there abouts, diagnosed 2006 with colitis / crohns...I've made a lot of crohnie pals but also lost a few, alas,Some have taken a break,others have passed on sadly. I tend to look in daily as it's good to chat to others who understand and don't mind me moaning when I need too and also enjoy a bit of fun and are not easily offended.Keep well everyone and keep warm (or cool, depending on where you are} and go easy on the forthcoming holidays.....

 

[Bufford]

I found this place in 2015 while looking for information on the subject. My chrons journey started when I was 20 with a lump on my anus that turned into nasty fistulas. I had several painful day surgeries back then that today would be admitted hospital stays. I Managed to live and work until 2001 when a life threatening abscess required colostomy surgery. Managed to stay clear of the hospital until May of this year when I needed a proctectomy surgery leaving a small section of colon intact and a rebuilt stoma. Life does carry on despite fewer parts. I followed several on this site that sadly passed away.

 

[Scipio]

I wonder about ronroush7. Back when I joined in 2015 he was a very active poster - always greeting new members and wishing everyone well, for years. He must have had thousands of posts. Then one day he abruptly stopped posting and never returned. I've often wondered whether he died or otherwise abruptly fell very ill.

​

 

[Crohn2357]

David is no longer the owner of the forum. He sold it a few years back. He still retains the title of co-founder, but I can't even remember the last time I saw him logged in/posting.

Here's the link to David's thread about the new forum ownership:
http://www.crohnsforum.com/showthread.php?t=49870

The owners do not usually come onto the forum.

https://crohnsforum.com/threads/petition-remove-ask-a-doctor-now-function.79810/#post-959189

 

[Crohn2357]

Greetings Everyone!

For those who don't know who I am, I'm one of the original co-founders of this site. I stepped away a few years ago and am now back in charge of the site. A lot needs to be improved and I'm going to make that happen.

https://crohnsforum.com/threads/major-changes-coming-to-crohnsforum-com.85043/

 

[Lisa]

I guess I'm one of the 'old members' lol.....life has been busy so I'm not here as much but do still drop in and check on things....and am always available via email if there is an issue. Lisa

 

[Madhu]

It was a pleasant surprise for me to get an email this morning from the forum hiya! I hope everyone is doing well. I haven’t been active on here a lot. Life is busy with 2 kids now

 

[Agent X20]

Hi, guys.
Whatever happened to Agent X20?
Oops… I’m here. Ironic that I have a quick look on the forum and find this thread. I recognise most of the names on here. The Crohns has been quiescent over the last few years, but having problems with my mobility… but I’m still bobbling on OK.

 

[mf15]

I got the email also,still alive,healingwell another traditional forum is also much less active. I believe it is due to facebook where there are many disease groups. As for me, emergency colectomy in 2021,95% colon left plus rectal stump. Blew a hard stool through rectum,went septic. UC totally gone,go figure. Have to watch out for diversion colitis of the stump which happens every so often. The solution which works is to feed the colonocytes from the blood supply,with BHB/betahydroxybutyrate orally.The problem is no stool = no fuel for the cells.. BHB may also help UC, since butyrate is the main colonocyte fuel but beta oxidation is inhibited.
oldmike

 

[Nosebag]

Hi, I'm a member since 2014 but never posted like David, Dbergy or Kiny. Glad to see Kiny is still a member and the few that are still on here to share their experiences and knowledge. Still no cure and the only hope seems to be allogeneic hsct but the mortality rate is still too high.

 

[kansassunflower]

Happy to receive this email today and see the activity from members! I lived with terrible pain from age 34 to finally being properly diagnosed in 2003. A lot of hard work to know myself from the inside out and being willing to do whatever it takes has brought me really good numbers. I am now 76 years young, remarkably healthy, no active Crohns, no inflammation markers, Calpro less than 30. I will write more about the protocols I follow. May you all have a richly blessed day

 

[Lynda Lynda]

I actually started to post here in 2006 under a different name. At that time was diagnosed with Ulcerative Colitis. In 2018 I was diagnosed with Crohn's. I am usually posting here or reading posts when my disease is not doing well and I need information and support.

 

[mrmar]

Happy to receive this email today and see the activity from members! I lived with terrible pain from age 34 to finally being properly diagnosed in 2003. A lot of hard work to know myself from the inside out and being willing to do whatever it takes has brought me really good numbers. I am now 76 years young, remarkably healthy, no active Crohns, no inflammation markers, Calpro less than 30. I will write more about the protocols I follow. May you all have a richly blessed day

Please do, I would love to hear more for our three yr old little boy with Crohn’s

 

[mrmar]

Please do, I would love to hear more for our three yr old little boy with Crohn’s

Very glad to hear you are thriving and healthy

 

[D Bergy]

I am still alive and doing well. Just on to other things. I think I posted about everything I had to say about Crohn’s as I was very prolific in my search for a solution.

I tend to go down the rabbit hole with full force on whatever subject I need to know. Once done, on to the next one if necessary. First Lyme disease, then Crohn’s. It is exhausting.

People from here PM me on occasion so I am not totally out of the loop.

I hope everyone here is finding solutions.
I hated being ill with Crohn’s and it came close to killing me. I truly hope all people with this disease can find a way to put it in the background and get their life back.

Best regards.

Dan

 

[Jennifer]

David sold the site again a few years ago so we have another new owner. I think the constant changing of ownership along with Google changing it's algorithm to where the forum doesn't pop up first anymore had a lot to do with people taking a break and having fewer new members. I'm just an admin now and no longer the lead Admin (joined 2010 aka Crabby). Also since the site no longer uses VBulliten it's been difficult for staff to do any behind the scenes work like we used to (we didn't get training). Interesting that the newsletter is working all of the sudden.

Ron may not be on the forum much but we added each other on Facebook years ago. He's still posting on there and around. He might've just taken a break like a lot of us. I can forward this page to him and let him know that people are thinking of him.

 

[Grant]

Still here, doing well on Ustekinumab. So much so that I've rediscovered the delights of fruitcake. Keep well everyone. Best Wishes, Grant.

 

[dreamintwilight]

I joined back in 2010 I think when I first got diagnosed with Crohn’s. I was on frequently because I knew no one with IBD (and was a newlywed in a brand new city with no local friends either!) and this was the best place to find support and information on the Internet! Thankfully, my Humira and azathioprine combo has kept me in remission, so I frequented the forum less and less as I was able to resume more of a normal life not dominated by my Crohn’s ( I have other medical issues I deal with now). I’m connected to some people on Facebook from the forum, but I do sometimes miss the old days connecting with people daily. I pop in occasionally when minor issues come up and I need info, but it’s harder to find the answers here like I used to rely on! Just not as many people posting their experiences anymore. Latest Crohn’s update is that I’m being forced to switch to the biosimilar Amjevita in January due to insurance not covering Humira anymore and my GI doesn’t seem bothered enough to try and keep me on Humira (after my 10+ year remission). So, I’m just praying and keeping my fingers crossed the switch goes smoothly and it maintains my remission!

 

[Harley's Mom]

I've been here since 2012 or there abouts, diagnosed 2006 with colitis / crohns...I've made a lot of crohnie pals but also lost a few, alas,Some have taken a break,others have passed on sadly. I tend to look in daily as it's good to chat to others who understand and don't mind me moaning when I need too and also enjoy a bit of fun and are not easily offended.Keep well everyone and keep warm (or cool, depending on where you are} and go easy on the forthcoming holidays.....

I was here then....I didn't post much. I hadn't gotten anything in my email. The last two days were the first in years. I got worse after the passing of my husband. The stress, I imagine.....I was diagnosed in 2000. I think. It's been a long time ago.

 

[Domino300]

I wonder about ronroush7. Back when I joined in 2015 he was a very active poster - always greeting new members and wishing everyone well, for years. He must have had thousands of posts. Then one day he abruptly stopped posting and never returned. I've often wondered whether he died or otherwise abruptly fell very ill.

​

Ronald Roush is on the "MYCrohnsand Colitis" forum.

https://www.mycrohnsandcolitisteam.com/activities/my_team?utm_medium=email&utm_source=sendgrid

 

[joelsprechman]

Arrived here because of the email in my Inbox.

I stopped coming here because I went deeper into my own journey.

I wound up on a super strict diet and three immunosuppressants and was still quite sick.

I know natural solutions are controversial but I'm just so grateful that I'll share for anyone interested.

Now in 2024 IBD is doing fine, naturally, due to my friends who are an Ayurvedic coach and doctor. Doc prescribes hospital grade medicines from India that have truly saved my life and allowed me to not only keep all of my colon but also no longer need the ER and hospital every few months.

My eyes are swelling up as I write this as I'm just so thankful for them.

April 2021 was my last discharge from a hospital and I count my blessings daily as it's been 1,343 days since the last hospital stay which I almost can't believe.

I know this sounds crazy, but I wish IBD was all I was dealing with as CIRS is the more challenging diagnosis for me, and is one of the biggest contributors to all the flare-ups I use to have.

Hope y'all are doing as good as you can be!

 

[Tubes]

I also got the email. I haven’t been online that much the last 2 or so years. I’ve been busy with my health & life general. Hope everyone here is doing well.

My health has been dreadful since 2021. I had multiple fistula’s(one damaged my bladder). Had bladder repair surgery and they had to make a new spot for my ileostomy. Kept having flares. Started Stelera about 2 years ago to mixed results(its been great for my skin).

About a year ago I woke up blind in my right eye. I was diagnosed with peripheral ulcerative keratitis. Vision came back quickly after a couple days of ointments & drops. Been dealing with various eye issues & migraines ever since. My doctors think I might have short bowel syndrome as nothing seems to be working to slow down my output. Also been taking care of my dad who’s in his mid 80’s who health has been atrocious the last 5 or 6 years.Besides all that everything is great.