[ocelotito]

After calling my surgeon like every day in agony, he sent me to a Gi doctor. She told me my problem comes from the inflammation I had (I had peritonitis from a bile leak) and gave me zelmac (zelnorm in other countries, I live in mexico, where this thing still exists). I know it's supposed to be a miracle drug but I am afraid to take something that has been taken off the market in other places. I asked her what the side effects were, and her seply was a smug "all medications have side effects, even the lactulose you take, but this is a medicine you need to get better". This attitude is enough for me to decide it's time to run for another doctor. I used to take it and continue, but not trusting my instincts is what got me so injured in my first hospital stay. So I'm calling the surgeon and telling him upfront I didn't like her and why. My question is, now that I have a prescription for the so zelmac, should I take it and meanwhile look for another doc, or wait until I see the new doctor? I'm not nearly as bad as I was last week and as long as I don't get constipated, I can hold on, but some extra relief would also be welcome.By the way, what is the problem with zelnorm?

 

[Kathleen M.]

The USFDA seems to feel that IBS is so mild that pretty much anything used to treat it has way too much risk compared to any benefit there may be.They let lots of way more dangerous drugs be on the market, but since IBS is supposedly completely and totally treated with fiber any side effect is way too much. But that may be a bit cynical.There were some people that had heart attacks or strokes, but it isn't clear if it is any more than would have had those health problems anyway. But if anyone that ever takes an IBS drug ever has any health problem it must from the drug and the drug must be too dangerous for anyone to ever take, because, like I said they think IBS is really no big deal so any risk is way way way too risky. Doesn't matter that a lot of people who take everything will have some health problem unrelated to the drug, if it is an IBS drug it must mean the drug must be removed from the market.Oop, there goes that cynical thing again.I know a lot of people that would do anything to get it again because it works really well for them. The question is can you live with the IBS the way it is or not.I'm really tired of people with every single other "minor nuisance" can be treated with drugs that kill people but something as devastating as IBS is supposedly no problem at all and we don't need medications.

 

[ocelotito]

Thanks Kathleen,Your reply has been, as always very enlightening. A week ago I was dying and would have taken it immediately. Now I will still consider it because, though it's not a very intense pain, it's very constant and draining. What I didn't like about this doctor is pretty much the same concern you voice, give ME the choice. She got annoyed, bordering in angry when I asked her about the side effects, like "how dare you question me". I need to know the side effects because I need to choose whether I prefer the stomach pain or the potential headache, weight gain, palpitations etc. (For example I am asthmatic and I sometimes prefer the asthma attack, when it's mild, than the anxiety the rescue inhaler produces). It's our body, we should be able to make the choice.Diana

 

[Kathleen M.]

I do think doctors should outline side effects so people can make an informed choice rather than just being good little robots who do what they are told.There is always the risk that if you tells someone something bad they will make it happen (like a placebo can sometimes make you all better when it is just sugar, there can be nocebo effects where you get side effects because you expect them).What I dislike is regulators refuse to let people make those choices. You ask IBSers if their disease is severe enough that they will accept a slight increase in risk that some disease that will probably kill them eventually anyway may kill them sooner rather than later (so if your risk of dying from that anyway from that is 1 in 10 or 1 in 100 to start with will you accept a 1 in 10,000 chance it might happen sooner).For most other diseases they will let people choose to take the very small increased risk of something bad just to look better or for some other minor health problem. But they won't let people who can't work and can't have a quality home life suffer because they do not deserve to have a choice in the matter. At least you have the opportunity to make the choice. Most of us do not because IBS is treated as insignificant and we are all just complainers who should just get over it already.

 

[Mary5]

Totally agree Kathleen!I look fine on the outside and all my tests come back OK. So the doc says, it is functional. There is no cure, just management. And it is not life threatening.!!!!!! I and my fellow sufferers will confirm that severe IBS IS at least life impairing! The pain and severe physical discomfort suffered all day, all the time, and the emotional and mental duress of just trying to get through each day knowing that the next day will bring more of the same, make for a very limited life-style, lots of the blues...and takes a toll on your loved ones too.So, if it is functional, what "expert" follows up on this? Perhaps a neurologist or a psychiatrist ? a pain expert ? That is my next question for the doc.Resolor sounds promising...

 

[sirjohn]

I've had every thing else stop working for me, am up to 8 doses of miralax a day plus 3 doses of senna per day. Am just waiting for my colon to rupture from backed up stool. Have constant problems urinating because of the backed up stool. And have nothing to look forward to but a surgery like a colostomy. Unless a miracle happens and this IBS just reverses itself.Whoever thinks IBS is totally treatable with fiber is crazy.

 

[Mary5]

I hear you!I know you have tried "everything"...but from the people who have found something that "works" for them it seems to me that the key is in finding the right combination of osmotic and stimulant (medication/food).So my only suggestion for you at this point would be to try different combinations. There are many suggestions on this site.

 

[SKmohler6000]

I went to another GI dr cause I wanted a second opinion He told me that he didnt do second opions and why I came to himHe also told me he knew the other guy I went to real well and I should go back to himThe thing is the other GI guy laughs at me when I tell him something Dont we have the right to choose who we go too if are symtoms feel like they are not getting betterOne problem might be that I am Only 4n11 and am disabled .So my friend who runs two group homes is going with me this timeIm not to bad right now but am scared to try going on a trip because of what might happen.Sheila

 

[ocelotito]

I hate it when doctors cover for other doctor's stupidities.My present sad state of health is the result of having had a bad surgeon who not only injured my bile ducts but also severely injured my cervical spine and had me so long without food at the hospital that I ended severely anemic and malnourished. He went on a trip and left me in charge with another surgeon who ended up saving my life, when I had bile peritonitis and was almost septic. So I asked the second surgeon how accountable he thought the first surgeon was. His immediate reply was to protect his friend, he said "well , this things happen, I think you just have bad luck, you know, you even had the MRI machine break down at the middle of an exam". SO just because something "unlucky" happened to me, he refuses to accept that the other surgeon did something wrong!

 

[inagony]

Hi SirJohn - I see you are in Mason City, Iowa. I was just diagnosed with IBS-D & am having a hard time coping...acute nausea is wearing me down. Do you know of any IBS support groups in Mason City? Thanks!