First post-so happy I found this site. I am wondering if anyone has participated in the Mayo Clinic Clinical Trial. I called and was told that they are looking for 25 participants and to date they have had 10 participants.
https://www.mayo.edu/research/clinical- ... s-20308381
Thank you, Roberta
Mayo Clinic Clinical Trial for those with MC
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
-
tommyboywalker
- Adélie Penguin
- Posts: 126
- Joined: Tue Jan 23, 2018 3:49 pm
Hi Roberta and welcome to the MC forum!
There is a lot of good information here and folks to run your questions by. It has been invaluable to me!
This is a very interesting clinical trial! Thanks for sharing this link.
I really know nothing about how this clinical trial will be performed, but my GI doctor Dr. James Wise of CentraCare GI in St. Cloud MN, whom I trust wholeheartedly.... trained under Dr. Darrel Pardi of the Mayo Clinic in Rochester MN, who is conducting this clinical trial.
My doctor (and I agree) feel that Dr. Darrell Pardi is arguably one of the most knowledgeable doctors in this country when it comes to Microscopic Colitis. And he does understand the importance of DIET when it comes to managing it. Instead of reinventing the wheel, we basically adopted Dr. Pardi's strategy to treating MC when I contracted it. And I am happy to report that I am in solid remission with a very positive outlook.
So yes, this is very encouraging clinical trial. Dr. Pardi really does know his stuff. If anybody signs up for it, please comment.
There is a lot of good information here and folks to run your questions by. It has been invaluable to me!
This is a very interesting clinical trial! Thanks for sharing this link.
I really know nothing about how this clinical trial will be performed, but my GI doctor Dr. James Wise of CentraCare GI in St. Cloud MN, whom I trust wholeheartedly.... trained under Dr. Darrel Pardi of the Mayo Clinic in Rochester MN, who is conducting this clinical trial.
My doctor (and I agree) feel that Dr. Darrell Pardi is arguably one of the most knowledgeable doctors in this country when it comes to Microscopic Colitis. And he does understand the importance of DIET when it comes to managing it. Instead of reinventing the wheel, we basically adopted Dr. Pardi's strategy to treating MC when I contracted it. And I am happy to report that I am in solid remission with a very positive outlook.
So yes, this is very encouraging clinical trial. Dr. Pardi really does know his stuff. If anybody signs up for it, please comment.
-
dolson
- Gentoo Penguin
- Posts: 310
- Joined: Fri Mar 30, 2018 12:35 pm
- Location: Hilton Head, SC
- Contact:
Thanks Roberta
I keep track of medical trials. This sounds interesting. I may want to give it a try. I am losing the game of Microscopic Colitis. Yes, I've had a lot of medical problems, but this disease attacks everything in your body. I am totally exhausted. I live in the bathroom and wear Depends all the time. I only take D3 and Magnesium along with Klonopin for Dystonia. Everything is soft and vegetables cooked super soft. Eating is something that is stressful. I do everything I can to manage it, but the Beast has a mind all it's own. I have taken advice from y'all, but nothing seems to work.
Like one post said, it's hard for him because he's fighting Celiac and MC. I think the same for me too.
I'm at a standstill. Stuck! I thought pumpkin pie was my answer, but this go round it doesn't seem to help. Our body changes. What's good one day is not good the next. Pure Madness! Dorothy
Like one post said, it's hard for him because he's fighting Celiac and MC. I think the same for me too.
I'm at a standstill. Stuck! I thought pumpkin pie was my answer, but this go round it doesn't seem to help. Our body changes. What's good one day is not good the next. Pure Madness! Dorothy
Thanks for sharing this medical trial!
Dorothy: I'm just jumping on this board after some time away and reading some of your posts -- it sounds like you've had a frustrating go of it! Like you, I have Celiac and MC and I'm also on other medications for other medical conditions. I read in another post that you don't want to try any steroids. I wonder if you would consider talking to your doctor about Lialda (or any of the mesalamines)? It sounds like you're really struggling and I hope you know that there are a few other meds out there (I see someone already mentioned cholestrymine to you). I am someone who got some relief from Lialda while I continued to work on my diet. Of course, nothing works for everyone, but it might be worth exploring!
Best of luck to you!
Lisa
Dorothy: I'm just jumping on this board after some time away and reading some of your posts -- it sounds like you've had a frustrating go of it! Like you, I have Celiac and MC and I'm also on other medications for other medical conditions. I read in another post that you don't want to try any steroids. I wonder if you would consider talking to your doctor about Lialda (or any of the mesalamines)? It sounds like you're really struggling and I hope you know that there are a few other meds out there (I see someone already mentioned cholestrymine to you). I am someone who got some relief from Lialda while I continued to work on my diet. Of course, nothing works for everyone, but it might be worth exploring!
Best of luck to you!
Lisa
-
dolson
- Gentoo Penguin
- Posts: 310
- Joined: Fri Mar 30, 2018 12:35 pm
- Location: Hilton Head, SC
- Contact:
Gabes
Thanks for telling me about pumpkin pie. It's soft, therefore I can tolerate the pie if I don't go hog wild. I can only eat soft foods. I am serious about finding relief.
I will increase my protein intake for healing. As my Mom use to say, this is "a pickle in the behind." I'm trying to make light of some heavy lifting with MC. You have helped me so much Gabes. Your knowledge of MC is amazing! Thanks, Dorothy
I will increase my protein intake for healing. As my Mom use to say, this is "a pickle in the behind." I'm trying to make light of some heavy lifting with MC. You have helped me so much Gabes. Your knowledge of MC is amazing! Thanks, Dorothy
-
dolson
- Gentoo Penguin
- Posts: 310
- Joined: Fri Mar 30, 2018 12:35 pm
- Location: Hilton Head, SC
- Contact:
tommyboywalker
Hi tommyboywalker, I just got off the phone with the Mayo Clinic in Rochester, MN. I hope I am a candidate for the study. My husband and I will fly there for help. They are doing a study on Colesevelam. I hope it works because this will be an airplane flight and maybe an expensive trial study that comes out of our pocket. I will be the guinea pig, so I really don't think I should be charged for the trial. Oh Well.
-
tommyboywalker
- Adélie Penguin
- Posts: 126
- Joined: Tue Jan 23, 2018 3:49 pm
Re: tommyboywalker
Hi Dorothy,dolson wrote:Hi tommyboywalker, I just got off the phone with the Mayo Clinic in Rochester, MN. I hope I am a candidate for the study. My husband and I will fly there for help. They are doing a study on Colesevelam. I hope it works because this will be an airplane flight and maybe an expensive trial study that comes out of our pocket. I will be the guinea pig, so I really don't think I should be charged for the trial. Oh Well.
Wow, I'm glad you checked into this! And I sure hope that you are accepted into the trial. Most of the trials I have heard of are funded so there is no charge to you, but I cannot speak to the financial specifics of this trial. Be sure to read any and all of the fine print if you are a candidate. And as you mentioned, you have to factor in airline, hotel costs, time constraints, followups, etc.
I know life has been miserable for you and I commend you for seeking out more information to see if you would be a candidate. Thanks to Roberta for informing us about this clinical trial on this forum.
Please keep us updated!
I am very interested in finding out the results of this trial as recently, Sandoz brand cholestyramine has made a huge difference in my life. I was taking Colestipol pills initially and they didn't work well for me; lots of gas, some gastric pain, not lots of D relief. One pill was probably too much for me.
I switched to the cholestyramine packets and now take 1/2 packet each morning mixed well in water. This morning I told my husband that if there was a national poop contest, I would surly be in the running! My morning poops are now large, well formed and of a "normal" consistency.
I can't help but wonder, as have others, if more MC folks wouldn't benefit from cholestyramine.
Susan
I switched to the cholestyramine packets and now take 1/2 packet each morning mixed well in water. This morning I told my husband that if there was a national poop contest, I would surly be in the running! My morning poops are now large, well formed and of a "normal" consistency.
I can't help but wonder, as have others, if more MC folks wouldn't benefit from cholestyramine.
Susan
-
dolson
- Gentoo Penguin
- Posts: 310
- Joined: Fri Mar 30, 2018 12:35 pm
- Location: Hilton Head, SC
- Contact:
Thanks for y'alls feedback and information
Again, thanks to Susan, tommboywalker and Lisa for your help. Yes, this disease has knocked me to my core. I called Mayo, and the drug is COLESEVELAM they are testing. Infomed that the medication helps some but not everybody. It's a bile binding medication. I had my gall bladder removed and my limited medical knowledge about this stuff leaves me in a quandry. I'm perplexed. I called Mayo about the clinical trial and my husband says we are going to Rochester, MN, if I get accepted into the trial. Now I have a UTI, caused by chronic diarrhea.
Susan, is CHOLESTYRAMINE a bile binding medication? Lucky you for finding a medication that works. Having well-formed poops must be a wonderful thing. I wouldn't know about that. Can you get it from your primary doctor or do you have to see one of those mangy GI specialists who treat you like poop? But that's here in Savannah where the doctors are poor and uncaring.
Sorry to be despondent and angry. I would like to be a normal happy person and with normal bowel movements, because this can't go on.....
I will stop being difficult and try to remain upbeat. Thanks everybody for y'alls aid!
Susan, is CHOLESTYRAMINE a bile binding medication? Lucky you for finding a medication that works. Having well-formed poops must be a wonderful thing. I wouldn't know about that. Can you get it from your primary doctor or do you have to see one of those mangy GI specialists who treat you like poop? But that's here in Savannah where the doctors are poor and uncaring.
Sorry to be despondent and angry. I would like to be a normal happy person and with normal bowel movements, because this can't go on.....
I will stop being difficult and try to remain upbeat. Thanks everybody for y'alls aid!
Yes, cholestyramine is a bile binding medication, a bile acid sequestrant. My GI doc wrote the script but your primary doctor can certainly do the same, if willing. If you can talk to one of your docs and have them write the script, it might be worth a shot before going to the Mayo Clinic.
I think that some or most of us taking it did not have a fecal bile acid test done. IMO, if the medication works for you, that will show that you had a need for a bile acid sequestrant.
My gallbladder has been out for a long time and yet bile can affect those that still have their gallbladders, too.
Susan
I think that some or most of us taking it did not have a fecal bile acid test done. IMO, if the medication works for you, that will show that you had a need for a bile acid sequestrant.
My gallbladder has been out for a long time and yet bile can affect those that still have their gallbladders, too.
Susan
HI Dorothy,
Remember this healing gig takes patience and time....lots and lots of time and sometimes it can become infuriating that it is taking so long but each one of us is healing at a different pace than the other so don't be so hard on yourself
On the lines of Cholestyramine I found it helped me about middle way thru my journey, I used it for a few months when I felt like everything else just wasn't working anymore, like I plateaued. I have my gallbladder, so for you to not have your gallbladder you are a perfect candidate for the Cholest treatment and it may even be your special healer helper and you may need to continue with it to help absorb some of the left over bile that dumps into our intestines that helps digest the foods we eat.
Remember this healing gig takes patience and time....lots and lots of time and sometimes it can become infuriating that it is taking so long but each one of us is healing at a different pace than the other so don't be so hard on yourself
On the lines of Cholestyramine I found it helped me about middle way thru my journey, I used it for a few months when I felt like everything else just wasn't working anymore, like I plateaued. I have my gallbladder, so for you to not have your gallbladder you are a perfect candidate for the Cholest treatment and it may even be your special healer helper and you may need to continue with it to help absorb some of the left over bile that dumps into our intestines that helps digest the foods we eat.
To Succeed you have to Believe in something with such a passion that it becomes a Reality - Anita Roddick
Dx LC April 2012 had symptoms since Aug 2007
Dx LC April 2012 had symptoms since Aug 2007
