Univ of Mich IBD Seminar

[Sue-2009]

I was at a seminar yesterday that the IBD depart at U of M put on. Being pretty new here, I was very very overwhelmed with the info. But, I will try to pass it on...Apparently they are the Univ credited with finding the Nod2 connection to IBD. They are working on a theory that (I've heard here!) that it is both bacterial and Biological (?NOD2?). THere for, they are looking into the use of Probiotics. I almost screamed. When ever I've asked about the probiotics..they say no--not really. Now, this researcher feels (not proven) that there is some sort of connection (surprise--just go the J Pouch site and you will see many many people who use them regularly). Any how, an interesting tid bit...They do not regularly prescribe Asacol, Pentassa (my current med!) and mesalmine meds any longer. MMmmm, makes you wonder. One of the leaders--all of them very bright and thank goodness they want to do this!! Mentioned that the pharmacudical companies are now taking an interest. MMmmm $$$$$$$$. So, I did ask however about the LDN. And basically got poo pooed. They mentioned that there was some "Rouge (sp) ) followers out there. And, there is not good data to support there theory. Mmmmm...Any thoughts out there? HoBo, does UCLA have any thoughts? A gentleman asked if U of M collaborates with other universities...and they said yes...But, if they did--would they not know that Penn is doing a study on LDN??? I don't get this disease....I left overwhelmed with info...they have something that they have put together that is some sort of an "appliance" to drain and medicate fistulas....Now, abcess and fistulas scare me to death...Sign me==overwhelmed....and feeling bleak--Sue

 

[D Bergy]

I guess my remission is a placebo effect since LDN is my main treatment.

Of course that is nonsense, so take all expert opinions with a grain of salt. They are opinions, after all, not facts.

The probiotic theory was an opinion also, so it turned 180 degrees over time.

Dan

 

[Fog Ducker]

Did they say why they dont prescribe asacol and pentassa anymore?

I think the problem is that if a doc is studying a new drug and sees promise in it, he kind of gets tunnel vision, and disregards other new ones like LDN.

 

[imisspopcorn]

Sue, do you have fistulas???? I have had the disease 12 years, never had an abscess or fistula, even though my bowel was on the verge perforation....Not everyone fistulizes or forms abscesses.....

 

[Sue-2009]

imisspopcorn...no I don't have fistulas at this time. What scares me is that, I had colitis and went through all meds..just had to have colon out...Now crohns (see how obsessed I am...I know I told this story ) am so worried that the meds don't work and will be in pain and fistulize (welcome to my neurotic thoughts)......Someone slap me....I am happy to see you have never fistulized. And the meds are holding Crohns at bay? I guess I don't get this disease yet or accept it. Aren't you supposed to feel better on the meds. I know your not pain free all the time..but my muscle legs hurt, I'm fatigued and my pouch hurts. I don't know....Thanks for understanding and being so supportive. Sue

 

[Sue-2009]

Fog Ducker...(that name!!! I am sure there is a story behind it!) Any how, I think they put it in the content that it is an old drug. That it was what they used and thought years ago, would be THE drug. Now there are so many other drugs that "work" differently, they feel they are "better" suited for crohns. At least, that is the impression I got. BTW, I hate when I get "poo Pooed"--little narcacism in me! Especially when I see that it helps some people. THe funny thing is, they poo pooed (wonder why I choose that word, LOL) probiotics a couple years ago...now, they are interested in it...Mmmm, what do you think...they need to work with the patients a little more closely? (RANT RANT RANT) Sue

 

[Crohn's 35]

My daughter's university classes are telling you to find out who is the supporter of the people trying to push certain drugs. There is usually someone behind the research funding it and looking for money... follow the money trail.

We had a IBD surgeon at a college for a seminar, he just discussed what is the best type of surgery or needed surgery, fistulas and colon cancer. It was interesting. He is one of the surgeons on staff in our hospital, he is the best around.

 

[Crohn's 35]

My Gi recommended the VSL#3 and when I quit it came back , now the VSL company is doing research on VSL and Rifaximin, shows good promise.. Next thing I will ask for is Rifaxmin, better than Flagyl and Cipro, safer. Who knows, everyone has to do with what they can afford and what works for them right? Everyone wants less side effects in a drug, last thing you want are complications from drugs...like we need that!

 

[imisspopcorn]

imisspopcorn...no I don't have fistulas at this time. What scares me is that, I had colitis and went through all meds..just had to have colon out...Now crohns (see how obsessed I am...I know I told this story ) am so worried that the meds don't work and will be in pain and fistulize (welcome to my neurotic thoughts)......Someone slap me....I am happy to see you have never fistulized. And the meds are holding Crohns at bay? I guess I don't get this disease yet or accept it. Aren't you supposed to feel better on the meds. I know your not pain free all the time..but my muscle legs hurt, I'm fatigued and my pouch hurts. I don't know....Thanks for understanding and being so supportive. Sue

Some of us never fistulize...I think it has to with how many different and varied genes are invovled with the disease.......Also, why some of us only have sm. bowel involvement etc......I would slap some sense into you if I was close by, and then you could slap me bacK...LOL! We all worry ourselves about what if scenarios, especially when we are feeling bad....I am so sorry you are having so much pain.

 

[Fog Ducker]

Fog Ducker...(that name!!! I am sure there is a story behind it!)

Fog Ducker= If you reverse the first letters its a slang around here for being a slacker at work and not doing anything.
Eg. "How was work today?" "It was alright didnt do a lot, pretty much f'd the dog all day!"
Can also be said as "poking the pootch" "making puppies" etc.

 

[Crohn's 35]

I have never had a fistula either.. knock-on-wood!

 

[CrohnsHobo]

Sue-

I didn't even bring up LDN at UCLA. I have brought it up to my Dr. and he sort of just shrugged it off. He was very non-committal about using it/being familiar with it. I just left him with some literature.

I decided I would give their current course of Humira/Metho a shot before I pursued LDN any further.

Both were in favor of Probiotics and I have been on them for about a year now. But boy are they expensive.

 

[imisspopcorn]

^ I did the same thing with my doctor about the LDN...He did look into it but said they weren't even into Phase III trials yet....so he couldn't get excited about it. The thing is, he was willing to look into it...

 

[Sue-2009]

Thanks you guys...I get myself going...and sometimes can't stop---thanks for the slap (LOL!) I have to stay positive...Maybe a hot bath, after work, after kids homework, after their activities after more work etc.. I do love my life and wish this annoyance would go away---go away bad dream!!! LOL THanks, I feel like i'm not alone...Sue

 

[Peaches]

Sue - just wanted to add that I have been diagnosed for 13 years and have never fistulized or had an abscess either - so not everyone gets it. It is a worry of mine as well as fistulizing disease seems almost uncontrollable in some people and so painful. Hopefully you will be blessed and never have it happen.

When I went to my IBD conference they referred to the old 5ASA's as using a shotgun rather than a bullet. They blanket the inside of your gut and you can't pinpoint where you want the pellets to go so you don't know if the affected area of your gut is getting a good dose of the 5ASA or not. I "passed" SOooo many of my Asacol - unopened. What an expensive waste. They eluded to the fact that they weren't very useful.

 

[Mountaingem]

Hobo, which probiotics do you take? I'd like to give it a try but there's so much conflicting info I'm confused.

 

[CrohnsHobo]

I took Florastor for about a year, and I am now taking Align (only because it is cheaper).

 

[Mountaingem]

Thanks so much! I'll read up on it and give it a try.

 

[kenny]

My hat is off to you for going out to one of these things. I'd like to attend something like that sometime

I have fistula/abscess issues and most have originated on the Ileum and go back into the small bowel. They cut out three when they removed my cecum and two more came back almost immediately. I had percutaneous drains installed at two sites (at different times) to collect the GI material and allow the abscess to heal its self. They are a pain but I really feel sorry for the people who get them around the anus and have them break through the skin. Mine have been inter-abdominal to this point and are not really anything to be afraid of. They suck for sure but are handled easily enough.

I think it is great they are looking at encouraging the biological side of things. I studded a similar phenomenon know as Mutual Antagonism in Plant Biology that probably works the same way as probiotics. It Basically follows that infection with a benign or less harmful microbe can compete for resources against harmful pathogens. Thereby creating a beneficial effect. I only studied this with respect to horticultural plant science and that was over 15 years ago, but it is something common enough in ecological systems and there is no reason it does not apply to the ecology within our guts. I hope something comes of it soon