Share Facebook
Crohn's Disease Forum » Your Story » Success Stories » 1 1/2 Years Later


05-31-2016, 08:22 AM   #1
mrjustaguy
 
Join Date: Jan 2015
1 1/2 Years Later

I know I haven't posted much on this forum, but I believe it's done me a world of good.
December 2014 was the longest month of my life: I was hospitalized, put on all kinds of drugs, had my bowels resected... Same story I'm sure many people here have also lived through.
After much deliberation, research, and reading other people's stories, I decided to give Low Dose Naltrexone a try. However, I was still scared, and wanted to hedge my bets a little. This apprehension led me to check out the Qu Biologics SSI trial that David was advertising in his signature for a while.
They ran me some blood work and fecal tests and found that my blood inflammatory markers were high, as was my calprotectin, and accepted me into the trial.
I'm pleased to report that all the people involved with this trial are wonderful human beings, each worth their weight in gold. It was a pleasant experience that stood in stark contrast to my previous hospitalization.
My labs did not improve during the double-blind portion of the trial, so I was enrolled in the open label portion. While on the actual treatment, my labs came very close to perfection, with my calprotectin reaching normal levels, and my blood work usually having just 1 parameter, usually but not always my creatine, a single point away from normal.
Today, I'm even more pleased to report that I just had a colonoscopy, from which my doctor deemed me in remission. She ordered me to stay on the LDN and follow up in another year.
So anyway, to David, and to everyone who shares their stories, advice, and arguments on this forum: thanks, you absolutely rule.
05-31-2016, 08:28 AM   #2
ronroush7
Forum Monitor
 
ronroush7's Avatar
 
Join Date: Oct 2013
Location: vienna, Virginia

My Support Groups:
That is great news. I hope you stay in remission for quite a while.
05-31-2016, 08:45 AM   #3
mrjustaguy
 
Join Date: Jan 2015
Thanks! I hope you're doing well too. Judging from your profile, it looks like you've been at it with this disease for about as long as I've been alive. How do you handle the worry about it coming back?
05-31-2016, 08:54 AM   #4
ronroush7
Forum Monitor
 
ronroush7's Avatar
 
Join Date: Oct 2013
Location: vienna, Virginia

My Support Groups:
Last November or December, they found active inflammation. They started me on Humira about two months ago. I am hoping it puts me in remission.

05-31-2016, 08:59 AM   #5
mrjustaguy
 
Join Date: Jan 2015
Best of luck to you. Humira is supposed to be a good one, I hope it works.
05-31-2016, 09:19 AM   #6
ronroush7
Forum Monitor
 
ronroush7's Avatar
 
Join Date: Oct 2013
Location: vienna, Virginia

My Support Groups:
Thanks
05-31-2016, 03:30 PM   #7
Scared1
Senior Member
 
Join Date: Apr 2016
I know I haven't posted much on this forum, but I believe it's done me a world of good.
December 2014 was the longest month of my life: I was hospitalized, put on all kinds of drugs, had my bowels resected... Same story I'm sure many people here have also lived through.
After much deliberation, research, and reading other people's stories, I decided to give Low Dose Naltrexone a try. However, I was still scared, and wanted to hedge my bets a little. This apprehension led me to check out the Qu Biologics SSI trial that David was advertising in his signature for a while.
They ran me some blood work and fecal tests and found that my blood inflammatory markers were high, as was my calprotectin, and accepted me into the trial.
I'm pleased to report that all the people involved with this trial are wonderful human beings, each worth their weight in gold. It was a pleasant experience that stood in stark contrast to my previous hospitalization.
My labs did not improve during the double-blind portion of the trial, so I was enrolled in the open label portion. While on the actual treatment, my labs came very close to perfection, with my calprotectin reaching normal levels, and my blood work usually having just 1 parameter, usually but not always my creatine, a single point away from normal.
Today, I'm even more pleased to report that I just had a colonoscopy, from which my doctor deemed me in remission. She ordered me to stay on the LDN and follow up in another year.
So anyway, to David, and to everyone who shares their stories, advice, and arguments on this forum: thanks, you absolutely rule.
That is great! I know how you feel about the worry, I am a natural worryinf and worry about my husband daily but this ssi trial is very promising. I think the best thing you can do is take it day by day and have hope that down the line, they will have this figured out once and for all with the new research
05-31-2016, 05:28 PM   #8
mrjustaguy
 
Join Date: Jan 2015
That is great! I know how you feel about the worry, I am a natural worryinf and worry about my husband daily but this ssi trial is very promising. I think the best thing you can do is take it day by day and have hope that down the line, they will have this figured out once and for all with the new research
Is he on the trial too? I'm glad that someone else out there with Crohn's has a caring spouse. My wife and I are the opposite - I'm fretting constantly and she's always trying to get me to calm down. I'm just glad she was right this time.
05-31-2016, 05:40 PM   #9
Scared1
Senior Member
 
Join Date: Apr 2016
Is he on the trial too? I'm glad that someone else out there with Crohn's has a caring spouse. My wife and I are the opposite - I'm fretting constantly and she's always trying to get me to calm down. I'm just glad she was right this time.
Actually he is what I think in remission and the doctor said he has a mild case but that could change - so I always check on trials and research being done. There is a thread that talks about this and other people who have tried it. I know you will have a worry about it in the back of your head but the idea behind this vaccine is that it helps your body treat the underlying issue - and in their earliest trials they have a guy who has been in remission for 4 years and counting - so if you start to feel the symptoms again, I think it would be approved by then and you can have another round😊I am sure there are going to be significant changes and advancements within the next ten years with all the trials going on...
05-31-2016, 05:41 PM   #10
Scared1
Senior Member
 
Join Date: Apr 2016
Is he on the trial too? I'm glad that someone else out there with Crohn's has a caring spouse. My wife and I are the opposite - I'm fretting constantly and she's always trying to get me to calm down. I'm just glad she was right this time.
Actually he is what I think in remission and the doctor said he has a mild case but that could change - so I always check on trials and research being done. There is a thread that talks about this and other people who have tried it. I know you will have a worry about it in the back of your head but the idea behind this vaccine is that it helps your body treat the underlying issue - and in their earliest trials they have a guy who has been in remission for 4 years and counting - so if you start to feel the symptoms again, I think it would be approved by then and you can have another round😊I am sure there are going to be significant changes and advancements within the next ten years with all the trials going on...
06-01-2016, 07:53 AM   #11
mrjustaguy
 
Join Date: Jan 2015
Yeah, that's for sure. I did extensive research when I was first officially diagnosed, and the sheer amount of clinical trials going on gives me much hope.
06-09-2016, 07:56 PM   #12
Scared1
Senior Member
 
Join Date: Apr 2016
That is great news. I hope you stay in remission for quite a while.
Hi Ron,
I was wondering if you every thought of giving this SSI treatment a try? I mean trying to enroll?
06-09-2016, 08:10 PM   #13
ronroush7
Forum Monitor
 
ronroush7's Avatar
 
Join Date: Oct 2013
Location: vienna, Virginia

My Support Groups:
I don't know anything about it.

Reply

Crohn's Disease Forum » Your Story » Success Stories » 1 1/2 Years Later
Thread Tools


All times are GMT -5. The time now is 11:00 PM.
Copyright 2006-2017 Crohnsforum.com