[trbell]

anyone know what's next if zelnorm doesn't work?tom

 

[KLG]

I am not sure. I had ordered it from Mexico, but have yet to use it. I am not sure if you saw my post in the C section. If not take a look. It's about Magnesium. I have been IBS free since Istarted taking it. I tried to include links for anyone interested. It's basically information on the symptoms of deficiency, and what it does to aid the body. If you haven't tried Magnesium yet, please take a look at the thread. Magnesium has helped a lot of us IBS-C sufferers. http://www.ibsgroup.org/cgi-local/ubbcgi/u...c;f=26;t=000745 kari

 

[trbell]

i was talking here more about new medication in development but thanks for the info.tom

 

[metooo]

Tom,The next drug being tested, which is currently on Phase III is Dexloxiglumide ... that's the closest one most likely to come out on the market, of course, subject to approval.The concept is very different to Zelnorm as it works on CCK (cholecystokinin). It's a hormone that is produced in the gut. It's supposed to reduce the pain one gets after consuming a meal and/or water, and helps with motility. I tried to get into the trials, but was turned down once they saw my medical records (stating "severe" IBS.) That too seems to be for mild to moderate cases, but who knows, it could work for us. I am not sure how far it is from being marketed or being approved, or how effective the trials have been. There hasnt been much feedback on the BB which isnt a good sign to me.Other than that there isn't anything in the pipeline for IBS C at this point. I know a web site that gives updates about all this. I'll try find it again in the morning and post it on this posting ... I'm too tired right now.By the way, how's Zelnorm going. I'm getting worse and worse. I've tried many ways of taking it ... closer to food, with food, 3 hours before, with a hot drink ... still not having any luck.I'm going to try it with strong coffee with caffeine (I hate coffee ... I'm a tea drinker and I dont like taking caffeine, however I will do anything to make this stuff work) Have you tried it with coffee yet? I'm starting probably on Wednesday, if I can get someone to buy me some ... its so tough being stuck at home and dependent on others ... and people wonder why I'm depressed!!Let us know if you find something that works. Good luck. Dont give up yet, please!!

Remember, were bigger than this stupid problem, we cannot let it beat us ... we have to be in control, not the illness

 

[trbell]

metoo, make an appointment with a doctor. he'll probably have samples. by the way my doctor said all the stuff about for just women is just sales nonsense - I think there's also some research on this.tom

 

[metooo]

Tom,I saw the doctor yesterday, she hadn't even heard of the drug. Most docs here dont know about IBS and treatment options ... still believe it's all in our head. I live in the South ... really conservative!

Been to 3 pain clinics, they all gave me Fentanyl which is a powerful narcotic patch. When I refused to take it, they wouldn't see me anymore. I can tell you so many stories of what I've been through, but there wouldnt be enough time of space.

 

[slacker]

Fentanyl for IBS? You must be just dying with this thing. Sorry to hear its that bad. Slacker

 

[metooo]

Slacker,Pretty much ... it's literally taking everything out of me and I have to ask myself how much longer I can go on for, and I really mean it. I would honestly have my colon removed in a minute if I could, it's worthless and hurts so much I cant see much use of it anymore other than make my life a misery. I've been homebound for nearly 3 years and unable to function more than about 1 hour at a time ... with pain and all and it gets worse no matter what I do. Distraction makes no difference. The pain is so bad I cannot stand up straight, walk or stand. Even have problems turning in bed. I have about max 3 OK hours a month, other than that I would rate the pain on a scale of about 9 to 10, average being about 7. It is excruciating and getting worse.Zelnorm has definately made things worse and I havent had a bm in 4 days even with laxatives. I have reached a point now I cannot eat. Have even considering resorting being tube fed. I'm in a pretty desperate situation. The worst it the disappointment with Zelnorm. I honestly didnt expect a cure all, however was hoping for some reduction in pain, pressure, gas and bloating ... but mainly PAIN. Instead everything is worse.On some very severe occasions I have had no choice but to resort to narcotics like 2 Percocets, but that barely took the "edge" off and made me very panicky. Boy, I paid the price for it big time a week following that.50mg of Fentanyl did help but I was so nauseus and sick and of course it stopped my colon completely. It's pretty tough dealing with this. I feel so disappointed about Zelnorm.Sorry for rambling ... its pretty tough fighting this thing on my own, I dont know what I'd do without you guys! Thanks so much for all your support and for just being there.

 

[jo-jo]

metooo- I think you should go see your doctor again because how could ibs give you enough pain that you have problem walking most of the time. For me to be in that much pain I would have to eat eggs or take a robaxacet, those two put me in bed for a week. Are you taking any meds that would do this to you? If I am careful I am pain free much of the time. There has to be something else wrong, this can't be just ibs.

 

[linesse]

Sadly, It can be "just IBS"I can keep my IBS C under control, except during my monthly time of ovulation(Seems progestrone at this time increases C and sensitivity).So for up to a week each month, I too suffer from excruciating pain.I have seen 2 G.P.s, 2 Gastros, and 3 Gyns.Nothing but IBS...and no cure.

 

[trbell]

linesse, Have you tried zelnorm? It does seem to be helping with my pain but I've only been on it a week. Doesn't help the bloating, though.tom

 

[LML]

TomI've been asked to participate in the Phase III Dexloxiglumide trials. It's a year long program where all participants will receive the drug. The coordinating nurse worked on Zelnorm for 8 years,and she's pretty excited about this new drug. Says initial tests showed that it also helped some with the bloating problem as well as C. (That part has great appeal for me!) It's in a pill form that one must take twice a day.I'd really like to know other folks' experiences in participating in these trials. I've a pretty stressful year coming up, and so am a bit reluctant to sign up for a year now when diet, HT and Miralax have made my C so much better. I just can't afford the depression that used to accompany the severe IBS. Anyone else participate in one of these trials?And what was your experience like? This was to answer Tom, but I'll double post this as a new question too.

 

[trbell]

do you have a number for them? the last trial I called about dexlox wasn't accepting males.tom