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Crohn's Disease Forum » Books, Multimedia, Research & News » Forum Approved Clinical Trials, Research Studies, Surveys and Products » Important new low side effect treatment option in clinical trial you may be eligible for (or help others learn about)


 
03-19-2014, 09:08 AM   #31
colleen.miller1428
 
Join Date: Mar 2014
Location: London, Ontario
I was lucky enough to participate in the QuBiologics SSI Crohn's trial. Let me tell you, it changed my life in so many positive ways!

I was diagnosed with Crohn's in the summer of 2009 and have now been Crohn's free since September 2012, thanks to the SSI treatment.

I am happy to answer any questions privately or publicly about my experience before and after the treatment.
03-19-2014, 09:24 AM   #32
David
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I can validate that Colleen was in the compassionate use trial they did. Thanks for your willingness to share with others Colleen

Colleen, what were your symptoms like before the trial and what are they like now? Are you on any medications?
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03-19-2014, 11:35 AM   #33
colleen.miller1428
 
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Before explaining my symptoms, I feel it necessary to explain a little bit of how I became diagnosed with Crohn's disease. Some of the information below may be too detailed...I've lost all sense of shame after dealing with this disease.

My diagnoses came following a surgery to drain a perianal/perirectal abscess. This surgery was an emergency procedure and the doctor performing it said he had never seen an abscess like it.

At the time of the surgery, I was 21 years old. Call me naive, but it had never dawned on my that most people do not experience 10-20+ bowel movements and/or severe cramping before a BM.

After my surgery/recovery and diagnoses I started on remicade and Imuran. I chose to refuse prednisone, after doing intense research of the options my doctor presented me with. Remicade helped with most of my symptoms, however I continued to experience constant drainage. Gross - I know. But for a 22 year old, having to always be concerned about your next BM is easier than dealing with non stop abscess drainage.

So other than still having a movement after each meal, that was my biggest pain AND embarrassment.

That was then. NOW, I have completely recovered from the abscesses, I have zero pain, and have (on average) one BM per day. This treatment literally changed everything I dealt with every day. I never have to worry about travelling distances, what I eat, when I eat, or any other things I had to plan every day.
03-26-2014, 07:42 AM   #34
David
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For the record, I have reached out to a few people who were in the compassionate use trial like Colleen. I hope others will chime in with their experiences as well.
03-26-2014, 01:46 PM   #35
B.Elligsen
 
Join Date: Mar 2014
Like Colleen, I was also fortunate enough to have the opportunity to participate in the QuBiologics SSI Trial. An amazing decision in my life that has essentially left me symptom free for the past year.
I was diagonosed with UC in Nov. 2010, after previously being told I had IBS years before. I have been symptom and medication free since Dec. 2012.
I too would love to discuss life before and after the trial, or anything treatment related.
03-29-2014, 05:28 PM   #36
ChristieJP
 
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Just wanted to say that I just filled out the pre-screening questionnaire, so we'll see what happens. Thanks for the information! I am not on any medications except LDN, so that shouldn't be a problem, but I am one of the Crohnies who does not have multiple BMs per day - I tend to be on the constipated side in between diarrhea episodes. So maybe my symptoms aren't bad enough for me to be considered. I have freedom to travel as much as necessary (I work for myself), and I find the whole idea of clinical trials fascinating, so I hope they're willing to take me!
03-29-2014, 07:58 PM   #37
Allison M
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Is it in Canada only, David? I went to the site, but I'm a bit on information overload, so maybe there are more sites? Thanks.
03-29-2014, 11:07 PM   #38
nogutsnoglory
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Allison it's open to ppl from US but you need to travel to Vancouver (compensated). See the schedule for the trial: http://www.qucrohnstrial.com/trial-info/study-process/
03-30-2014, 02:21 PM   #39
Trevor
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B.Elligsen I'd be very interested in symptoms before and after as well as how your SSI treatment progressed.

Glad it worked so well :-D
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- Are you looking for a new treatment option for your Crohn's disease? If so, I suggest you look into the ongoing clinical trial by Qu Biologics for their SSI treatment. Click here for more information or to help spread the word.
04-04-2014, 12:03 PM   #40
David
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Just wanted to say that I just filled out the pre-screening questionnaire, so we'll see what happens.
Have they gotten back to you yet?
04-06-2014, 05:28 PM   #41
Adrie
 
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Hi guys,

My name is Adrienne. I was diagnosed with UC 10 years ago. 2 years ago flew down to Bahamas to receive this treatment (as the trial was not yet available in Canada) and was on the treatment for approx. 1 year. I was in full remission after 2 months of starting the injections, and have remained so since stopping (1 year).

I had no side effects, other than the redness at the injection site.

In addition to being in remission, it has also helped my immune system in general. I used to get every common cold, and after the treatment, I found I rarely get sick.

Let me know if you have any questions about it. I was done with suffering, so I gave this treatment a chance, and I am so glad I did.
04-06-2014, 08:29 PM   #42
David
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Thanks for sharing your story Adrie! What medications did you try for your UC prior to trying the SSI?
04-07-2014, 06:29 AM   #43
Adrie
 
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I was on Asacol and corticosteroids (Proctofoam), and Remicade prior to going on the SSi treatment.
04-18-2014, 08:17 PM   #44
David
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Here's an interview with Tyler Wilson who also took part in the compassionate use trial and has Crohn's Disease:

04-28-2014, 02:35 AM   #45
Ozark Hill Billy
 
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I applied to Qu Biologics and they responded with a phone call within 48 hours. I have all of the forms to complete the process but have not followed thru yet. The multiple connecting flights I would have to make and standing in security lines, it would be a troublesome task considering I have up to 15 + urgent D events per day. And now after a small bowel follow through and colonoscopy this week, my doc says I need to immediately address a stricture in the ileum at the ileocecal valve. I have a history of stenosing Crohn's that perforated, hence the urgency. I wonder how long the door is open for this trial? And if I will still be qualified after surgery? I had over 40cm taken from the ileum last go round and don't know how much will go this time, along with the valve. I will call them and post their answers for others who may be in the same condition.
04-28-2014, 07:09 PM   #46
Natalia Maria
 
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Hi David,

I just responded about my experience with the SSI treatment in another thread, but just to get the message out there as much as possible, I'll add my two cents in here as well!

SSI is a vaccine that you administer yourself, every other day; the method is similar to insulin injections commonly used for diabetes for example. Prior to going on the vaccine you are trained by a health professional on how to administer the vaccine properly. The vaccine is composed of dead bacteria - it's all natural and there are no side effects as a result (at least I never experienced any while I was on the vaccine, nor did the patients that I spoke with who were also on it). The vaccine activates the body's immune system by targeting the organs affected by the disease, thereby reversing the chronic inflammation associated with Crohns, Colitis, and other autoimmune diseases. I was on the vaccine for just a little under a year (July 2011 to June 2012). It literally changed my life. I was originally diagnosed with Crohn's in November 2009 and for the first year after the diagnosis I was in excruciating pain, probably because I refused to take all of the crazy drugs that were being pushed my way by my GI specialists. But I was always a firm believer in taking the natural route so I saw a natural path and focused on trying to get better through a better diet, herbs, probiotics, digestive enzymes, the list goes on. And although that did help a little, the pain remained. I ended up in the hospital with a bowel obstruction June 2011 and it was shortly after that, that my natural path told me about the clinical trial for SSI therapy, originally started by Dr. Gunn, a doctor from BC. Since SSI therapy was still in its beginning stages at this point, I actually flew all the way to the Bahamas to participate in the trial since it had not been approved in Canada yet. But now it is, because they have seen so much success with it! I am no longer on the vaccine, and have been symptom free (knock on wood) for almost two years. Following a colonoscopy from March of last year, I was told that I am 100% in remission. I can't stress enough how different my life is now. And that, coming from someone who wasn't even able to get out of bed for days to go to work, is saying a lot. I noticed a difference in my symptoms within 48 hours of taking the vaccine. I would strongly, strongly, recommend this treatment to anyone. Let me know if you have any other questions!
05-01-2014, 06:42 AM   #47
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Hey everyone, I just wanted to thank you all for sharing your stories. I have been fighting Crohn's for a year now. I refused biologics and have been pursuing holistic and alternative treatments. I have progressively gotten worse and was unsure where to turn when I heard about Qu and the SSI vaccine. I actually got into the study!!!! I am scheduled for my first visit to Vancouver next week. I am praying that this is an answer to my prayers. I am encouraged reading all of your posts. I get very anxious and depressed thinking that at some point I'll have to either have surgery or go on a biologic, but I have some hope restored that the pain and agony of this disease can be helped with this new treatment. So, again, thank you for your posts! Those of you who have been through it, any advice? Were the benefits from the treatment quick? I'm so nervous about everything. Any info you can give would be appreciated!
05-01-2014, 07:46 AM   #48
David
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That's awesome Wendsjoy! Thank you so much for having the courage to go through this. I am excited for you and hope that it ends up being the answer you've been looking for. Either way, know that you're advancing the body of knowledge so that we're one step closer to finding better treatments for people with Crohn's.

And is your avatar purposely sideways looking? If not, want me to fix it?
05-01-2014, 12:49 PM   #49
Allison M
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I have called them too. They have specific tests they want to confirm diagnosis. I will call my doctor again, if he's talking to me! Thanks for commenting. I will try harder!
05-01-2014, 12:53 PM   #50
Allison M
Senior Member
David, I clicked my post while I was listening to that video with Tyler, and it clicked off my page, even though I hadn't finished it. What can I do to hear it?
05-01-2014, 01:01 PM   #51
Allison M
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Sorry. I got it.
05-01-2014, 01:13 PM   #52
Wendsjoy
 
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That's awesome Wendsjoy! Thank you so much for having the courage to go through this. I am excited for you and hope that it ends up being the answer you've been looking for. Either way, know that you're advancing the body of knowledge so that we're one step closer to finding better treatments for people with Crohn's.

And is your avatar purposely sideways looking? If not, want me to fix it?
Hey David! Thanks! Yes, fix it. I couldn't figure out how to change it.
05-02-2014, 04:45 PM   #53
bees
 
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I started my treatment in this study last month and I'm starting to feel major improvement, pretty sure I'm not in the placebo group

I feel like with remicade, my gut healed first, and then my BMs became normal, where with the qbeco treatment my BMs became normal first and my gut was too sore to deal with it. This caused an increase in pain at the start, which has since subsided. This could also just be because my intestines are more damaged this time around.

The staff running this trial is superb, I rarely get such great service at a gastros office. My gastro always yells at me for suggesting alternate therapies but when I mentioned that this study is being done by Dr. Brian Bressler he was willing to listen, Dr. Bressler has built up some respect in the community it seems.

I also feel way more comfortable injecting myself with inoculated e.coli because it's a very simple bacteria that has been around longer than us, our bodies know how to deal with it and it's not some new chemical that was developed recently.

Help spread the word about this treatment so that these folks can complete their study and bring this treatment to market.
05-02-2014, 04:48 PM   #54
David
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Hi bees, that's awesome that you're feeling improvement! Can you share what specific improvements you're noticing and how long it took?

And thank you for having the courage to take part in this trial!
05-02-2014, 05:13 PM   #55
bees
 
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I started having solid BMs on the 3rd week of the treatment, and every day since then has been better and better, healing seems to be happening nice and quickly now that proper digestion has been restored. I don't think I woke up once last night from pain, which used to wake me up a few times a night since my Crohns returned half a year ago.

There's still some mild tenderness when I push on the diseased parts of my gut but it's not nearly as bad as it was just a few weeks ago and should go away. For now I'm feeling great and have my life back again.

I think those of us taking remicade and getting surgeries are much more courageous, I haven't found a single negative comment regarding this treatment and would really like to know if there is any evidence of side effects or dangers.
05-05-2014, 06:20 AM   #56
karj
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Hi all I am too on humira, do they say how long that you have to be off the humira before you can commence the trial? Because I am not having great success with the humira
05-05-2014, 06:21 AM   #57
valleysangel92
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Karj, unfortunately I don't think this is available to you since you are in Ireland.
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coeliac disease/Osteopenia /Crohns/Arthritis/
laperoscopic hemicolectomy 25/06/ 2013

Meds- Vedolizumab, sulfasalazine, Lansoprazole, Vitamin D, prochlorperazine, Oramorph, MST, B12 shots My journey with crohns: http://glutenfreecookiemonster.wordpress.com/

Allergic to - inflectra, aza

Non CD meds - Gabapentin, paracetamol, ventolin
05-05-2014, 06:37 AM   #58
karj
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But did David say that they are looking at taking international patients now aswell, it also says it on their website?
05-05-2014, 06:58 AM   #59
valleysangel92
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Maybe then, I'd not heard about that
05-05-2014, 07:33 AM   #60
David
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Karj, I think it's only open to US and Canada residents but it's definitely worth contacting them and checking.
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Crohn's Disease Forum » Books, Multimedia, Research & News » Forum Approved Clinical Trials, Research Studies, Surveys and Products » Important new low side effect treatment option in clinical trial you may be eligible for (or help others learn about)
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