FDA recommendations re: Zelnorm

[MightyMouse]

Zelnorm Associated with Risk of Severe Diarrhea, Ischemic Colitis

The FDA recommends discontinuation of the drug in patients who develop

symptoms of ischemic colitis such as rectal bleeding, bloody diarrhea,

or new/worsening abdominal pain.

Medscape2004

http://mp.medscape.com/cgi-bin1/DM/y/eghT0...kdI0Dyr0FxM10AL

Medscape requires registration in order to view articles. Nina

[Guest Julia59]

Thank's Nina. I signed on Medscape, and printed several articles.

It seems Zelnorm tends to increse POTS symptoms in some of us. It gave me a headache, and made me shakey all day. I stopped and I am trying other things that DON"T WORK. I swear it feels like my system is BACKING UP.

I feel a mess-----Milk of magnesia , Miralax, metamucil, some other stuff I bought at the health food store---none of it works.

I'm sick of feeling like I swallowed a bowling ball. Dr. Grubb didn't seem concerned about this mess---he was more concerned with getting in contact with Dr. Heffez, and also putting me on Neurontin.

I also have a rather large pocket in my small intestines, and it feels like everything is stuck in the middle of my gut.

I'm going to scream---WAIT----I already did.

Julie :0)

[MightyMouse]

I feel for you Julia...I had a heck of a time with the gastroparesis in the past several weeks. I think I'm almost back to where I was before I stopped the Celexa; I restarted and a week or so later, my guts restarted too.

Nina

[Gwem]

I was on Zelnorm TWICE..

most recently i was put back on it last week and i was MISERABLE. My stomach and intestinal pain was horrible and it was so bad that i couldn't eat at all. Plus i was only on half a pill once a day and then down to 1/4 of a pill. Also it made all my other dysautonomia symtpoms worse then they would be on a regular day for me. I couldn't even get up and walk without being in severe pain nor drink a glass of water without having sever intestinal and stomach discomfort. Also my head ache and leg and arm weakness was worse and the tingling i get and coldness was worse. It pretty much just aggrivated everything i have deal with day to day with this crazy autonomic stuff. Has anyone had any relief with any other meds for the GI stuff? i'd posted the Zelnorm general discussion a while back but you can re-read what was said there too.

[Guest Julia59]

Yep--I remember reading the posts on Zelnorm Gwem..........

Nina, i'm glad the Celexa is regulating your GI problems.

I'm on the Wellbutrin---and it does not help in that department.

I called and left a message at Dr. Grubb's office today about my GI mess---but then I changed my mind and called my PCP. Grubb has enough on his plate.

Anyway, the nurse I talked to sounded like she understood. I told her pretty much what I told all of you. Then the other creepy nurse called back---the one I didn't want to hear from. She said the Doc told you to "TAKE AN ENEMA!"

Well I think i'm smart enough to do that if I need it. I told her I already took a stimulant laxitive---but told her I don't want to continue with that due to possible dependence. I told her I need something for long term use.

What I don't get is why she asked me what was wrong. I asked her if she read the notes. She said she only had one note, but still knew I needed an enema.

How do you know that if you don't know what's wrong? It's humiliating enough---but I guess she had a need to hear the gorey details again---all the while knowing what the doctor prescribed. Then she preceeded to say I don't understand--"you say the problem is chronic, but yet you say you don't need an enema". LONG TERM----LONG TERM! I told her I called because I need treatment LONG TERM---then I preceeded to ask her if I need an enema every day---or does she want to discuss treatment for chronic lower gut motility issues. I really don't think an ENEMA would be the treatment LONGTERM---DO YOU?

They are treating me like some nimrod with a minor constipation problem. I have had the GI issues all my life---but have never been this bad with the bowel motility. It would always straighten itself out one way or the other---with proper diet--FIBER---and so on. I have common sense.

Anyway she said the Doc want's to see me. They had a cancellation for tomorrow. Gee---now I get to go in there after my enema discussion---with all of them looking at me. I'm sick of dealing with this.

I'm going into the office with an attitude---and I am going to inform my Doc that I DO NOT want her special nurse cross examining me again.

Wish me luck tomorrow...................

Julie :0)

[MightyMouse]

I know the frustration with the doctor's office staff. My neuro's nurse is a wicked #$#%...he can't fire her because she's his partner's nurse. Anyway, after I told him of how she treated me 2x on the phone, he told me to tell her off and tell her the HE told me to get him immediately and just get off the phone and DO IT. He made me crack up!

I think you need to have a frank discussion with your PCP and let him know that she's not to make medical recommendations to you about things she's about which she's not an expert. She could really make you worse, and then he's be in big trouble. That's basically what I told my neuro before he told me to tell off the nurse. I'd been in serious pain with a month long migraine and she wouldn't give me an emergency appointment. He was FURIOUS. He's always been really attentitve about pain management.

Anyway, I think you'll feel better, even if just emotionally, if you say something about her giving you medical adivice that's not a good idea for you.

Nina

[Guest Julia59]

Thank's for letting me vent. My PCP is a She, but I didn't put her name on the board for NDRF's sake. Apparently she told the nurse to tell me this advice.

Scarey isn't it................? I thought we had a pretty good Doctor patient relationship---but now i'm getting the feeling she's getting the old syndrome of ---POTS patient getting on her nerves syndrome. I thought she had a pretty good clue as to what POTs can do to our bodies--------I guess I was wrong. She even worked with a Doc who specializes with NCS/POTS--- for teens/kids.

She has now moved to another location. This nurse had an attitude with my husband also----and according to my husband, so did the Doc.

WE may have to move on to another Doc----once again. Is there any doc's out there with a lick of sense?

Now I have to see her tomorrow---but she will get an ear full. I'm not standing for this anymore.

I'll let you all know how things come out. Might even be entertaining.........there has to be a sense of humor I guess.

Julie :0)

[Guest Julia59]

Well I went to the Doc today. She seemed to understand what I was saying----meaning she wasn't dismissive. She thought it was definately a neurological cause behind the gut motility. She prescribed reglan....

I also told her about her rude nurse-----about how she cross examined me.

She didn't look to happy about it---but it was really kind of hard to tell.

Maybe it's just the nurse---and the Doc is OK. I just know my tolerance is low and I just can't accept any more dismissive Docs. I just had my share of them---that's all.

She explained the ANS and the relationship with digestion----so she definately seemed OK with the POTS stuff. Anyway---now I have to see what reglan does. I know it's something for motility---but hopefully not real terrible side affects.

Doesn't is stink-------our sensitivity to just about anything we put into out mouths?

Julie :0)

[MightyMouse]

Julie, I'm so glad you talked to your doc. At least that part has been addressed. Now you just need to get those guts moving... I hope the Reglan helps you. I'd taken it in the past and sorry to say it didn't help me at all.

I have noticed that increasing certain types of foods in my diet seems to help me. As you may recall, I'm gluten intolerant, so I'm on a GF diet. I find that when I eat stuff that's got amaranth (a grain) in large quantities, I seems to be more "regular". Same goes for eating fresh cherries and dried cherries (so long as I drink enough water). Those seem to be the most useful additions to my diet--I'm currently eating an amaranth based breakfast cereal every day, with dried cherries and soy milk. Not sure if this is superstitious or not...it could just be that it coincides with me restarting Celexa. In any event, the stuff is tasty enough so it's not a big deal for me.

Nina

[morgan617]

julie sorry you had to go thru that. my gastro doc had a really horrible nurse in his endoscopy unit. i asked her to put the hep lock in my rt hand as i only have two good veins and the one in my arm is for big stuff. she said, i guess i'll just put it where i feel like it. so i told her where she could put it. she jammed it into my only decent vein, so when i went to the back, i told my doctor she'd better not be there the next time i came, and he fired her! so sometimes they do listen to you. but no one should have to deal with crappy nurses with attitudes. having been a nurse for 30 years, i find the attitudes these days of nurses very disheartening. and since most places hire with a fire or hire at will, there's no excuse to put up with this kind of treatment. i hope it gets better and you feel better. i just go back and forth between loose and stuck. sigh morgan

[Merrill]

Julie (and others), I wonder if you've tried (or thought about trying) acupuncture treatments for this horrible gut stuff you experience? (I haven't, because I don't have this problem, but I understand that acupuncture can work wonders in this and other arenas...and it seems like Western medicine just ain't doin' the trick for you right now.)

all the best

merrill

[Guest Julia59]

Some of the things I have read so far sound a little scarey about the Reglan.

My Doc also said that neutrontin might actually help. I don't know how---unless it's working on the nerve endings some how. I know it controls pain---neuropathy/neurolgia----so maybe it helps indirectly.

I was prescribed 300mg three time's a day originally, but now Dr. Grubb has lowered it to 100mg once a day. He said the original dose was too much. Anyway, I never took the original dose. I'm definately going to try taking to dose Dr. Grubb prescribed to see if that helps with both the pain and slow gut motility.

If it does, I will avoid the reglan.

Take Care,

Julie :0)