Clinical Studies

miesl

New member
Anyone else participating in a clinical study at the moment?

I ask because my boyfriend just started in one that is looking at using Diabetes therapy to improve muscle mass (and of course, lung function) in CFers with abnormal blood glucose but without fasting hyperglycemia (high blood sugar in the morning after fasting). Anyone else (or anyone else's loved ones) in the study?

-Michelle
 

lostreception

New member
not currently but i have been in the past i participated in a pulmozyme study and the tobi study when i was younger 15-16 im 23 now and i hear there is a new TOBI study out (something about powder or something) i might consider that
 

CheerColl

New member
I have been doing studies since I was in the 3rd grade, and up until last week, I would highly reccommend them!

However, the most recent study I was involved in was to test a new kind of enzyme (that is derived from plants rather then pig pancrease). The study required an inpatient stay, during which I was to go off of enzymes completely. I was a bit concerned about chances of a bowel blockage by doing this, but I was told that "oh no, people with CF just go [to the bathroom] MORE when off enzymes!"

And so, I began my 1st of 3 non-enzymes days, on the required "high-fat, high-protein" diet. Things were going well, and yes, I was going more. Then, on day 2, I woke up feeling extremely full and uncomfortable. They brought in breakfast, and I could barely stand to eat even a bite. This continued through snack #1, lunch, dinner, and snack #2. That day I hardly went to the bathroom at all. The final day of no enzymes I was in excrutiating abdominal pain, and feeling extremely full and nauseas (even though I had little to nothing to eat the day before). That night I tried to force down my snack, and thew up what little bit I had eaten.

By now, I knew something was wrong, but the nurses didn't seem to think anything was out of the ordinary. I begged for some kind of laxative, perhaps that could help me go, and maybe ease the pain. I was told I would have to wait "12 more hours" . After increased pain, and still no action at the toilet, I was given a stool softener -- which did absolutely nothing.

So, by day 4, when it was time to start the new enzymes, I still could not eat at all, and by that night, they gave me and NGTube and proceeded to pump Go Lightly (a strong laxative used to clear out the entire GI system) in me at a very fast rate. After an hour and a half, they were concerned that I still had no urge to "go". So I said I would try, and stood up to go to the bathroom, when I began throwing up ALL of the go lightly...none of it was moving into my system, and I had a BIG blockage.

Now, I had meconium ilius when I was born, which (obviously) required surgery. There was talk of surgery if they could not loosen the blockage. So the next day I had enema #1, and the day after that was enema #2, while being pumped with more go lightly. The enemas were very difficult, I would lay on a table, and be pumped with litres of solution until my bowels were full. During both I was violently vomiting, and what was coming up was digested waste that could not move beyond the blockage. (So I am officialy allowed to say something "tastes like sh*t", and know what I am talking about!). <img src="i/expressions/face-icon-small-disgusted.gif" border="0">

Anyway after the 2nd enema I was finally able to pass what was in my intestines, but I had to keep the NGTube in and be fed go lightly for 2 more days, and then...I was released!!! So I could not finish out the study, and I am quite hesitant to volunteer for another study!! (oh and I forgot to mention the kidney failure...that was fixed before I left).

I hope this does not discourage you, but I want it to caution you about the studies you chose!!
 

anonymous

New member
Colleen,
Wow, bless your heart<img src="i/expressions/brokenheart.gif" border="0"> I don't blame you if you never do anymore trials. I think you've "served your time" and then some!
I hope you're back to normal by now.<img src="i/expressions/face-icon-small-confused.gif" border="0">
Elle
 

CheerColl

New member
Elle,

Wow, thank you so much. Your kindness and support mean SO much...I could not have gotten through it without support from others. I am on my way back to normal, and just thankful its over. However, as a result of that hospital stay, I was able to find this website. You see, after noticing the purple CF bracelets on the physical therapists, I asked a friend to search on the web to find how I could get one. He found the Milan Foundation, and that lead me to cysticfibrosis.com. I am SO grateful that I have found this site. I have only been signed on for a day, and it had been such a strong emotional support for me. The other thing is, if everything had went as planned with the study, I would have done the vest the whole time, and not needed to see the physical therapists. So this strengthens my belief that "everything happens for a reason". Although last week I endured some suffering, I will be blessed (for the rest of my life) with the support that this website provides.

Thank you for your much-needed support! If you need encouragement or kind words sent your way, I am here for you.
 

anonymous

New member
Oh my gosh!!! THat's awful Colleen. I can't believe they didn't pull you out of the study earlier, especially with your history of meconium illeus. My son has has CF and I have Crohn's disease. I have had blockages and surgeries to fix them, they are so painful. Golightly is horrible, and even worse puking it up again. Yes, I too am officially qualified to say something tastes like s***, and it ain't pretty. Hang in there, this is a great site and I hope you find support here

On another note, my son has not participated in any studies, he's only four. How old do you need be? how do you here about them?
 

NoDayButToday

New member
Colleen-- That's an awful story! I've had a few enemas, and lets just say they weren't plesant- I can't imagine multiple enemas in a short time frame, PLUS everything else you mentioned!

How old you have to be to participate in a study varies between studies. I was in the Tobi study at around age 6 or 7. Some studies specifically look at drugs in children, others are geared more toward adults. It all depends on what the researchers are looking for.
 

anonymous

New member
Crohn's is a digestive disease. you get ulcerations and inflammation throughout your intestine, usually focused on one particular area. the main symptoms are abdominal pain, blood in stools, malnutrition, diarrhea, and more!! CF and Crohn's are in no way geneticly related, I just happened to get the short end of the stick in the gene pool!
 
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