I'm surprised to find that no one is on Lotronex

It really helps me.  Yes, it was pulled--thanks to Ralph Nader's Watchdog Group that seems to be an alarmest group that puts down all new drugs--but Lotronex was the first drug ever to be pulled that was put back on the market due to an outcry from patients who were taking it!  I'm not lucky in most areas of life, so when this drug came out & it actually helped a little, I figured it would be pulled.  Of course my GI told me I was being ridiculous & to stop being such a worry-wart, but I made him promise that when I called him to give him the news that the drug was pulled, he would call in a prescription to every drug store in a 20 block radius of my office (in Manahattan).  I remember that the announcement was made on the Tues. night news & I just started to cry.  But I made that call to my doc & he kept his promise.  I managed to get 600 pills by the end of the following day.  Either the pharmacy hadn't checked their computer yet, or the pharmacist felt bad for me--pleading & begging.  Getting paid back the $1700. from the insurance co.was another story...but everything worked out & I had the drug during the entire time is was off the market.  It was worth the effort.  Since then, I've tried going off it to see what would happen & my D comes back w/a vengence.  I refer to the time before Lotronex as the 'old days'--& I never want to be there again.  Don't get me wrong, I'm still basically a prisoner of my home, but if any of you have less severe symptoms than I did, it may just work wonders.  To get the real story on the drug, go to:

www.fda.gov/cder/drug/infopage/lotronex/lotronex.htm

 

My GI told me that every other avenue - Questran, fiber supplements, and Lomotil - should be tried before Lotronex, but told me that it really has helped people and he'd be willing to give it a go with me after failure of a strict trial on Lomotil.  That's what I'm doing now, just starting to take Lomotil every single day.  It's just that these other drugs are milder than Lotronex and daily use hasn't been shown to cause the side effects that Lotronex has - the one they worry about most is ischemic colitis.  It really has to be used in people who ONLY have severe diarrhea as a symptom, never constipation!  How many times a day are you naturally going at this point?  I'm anywhere from 5-25, and on those 15+ days I often wonder if Lotronex would be worth it. 

Dear JennyJo,
I'm 46 & have had this thing, coincidentally, right after the birth of my child which was 8-1/2 yrs. ago.
How do you know that only 349 people are using Lotronex?
My shrink has blamed all my problems on my controlling mother. I think that's their standard answer--"you were maltreated by your parents & that's why you're all messed up today. Your mother was anal so now you have these anal (so to speak) issues"!! I keep reminding him that my mother is dead & I got this in my late thirties. But according to him, she ruined my "hard drive" when I was young & now this disease has taken over in controlling my life. My mother, by the way, WAS a control-freak, so who knows...acknowledging this fact & having her take the blame hasn't really helped my condition. For that he had no answer so he told me to get on IBS chat rooms & gather information. WOW, that was quite a detour!! Anyway, I still take imodium or Lomotil when I absolutely need to be somewhere. That usually stops everything for a few days. If I'm feeling constipated, I immediately remedy it by taking a laxative since I am very much aware of the side effects of Lotronex. I think if you stay conscious if that, you'll be OK. To tell you the truth I'm more concerned about the injection I take to try & reverse the osteoporosis that this disease has caused. My doc who is head of Endocrinolgy @ Westchester Med Center finally admitted that I'm her first patient on it. All the literature on this drug talks about is the bone cancer it caused in laboratory rats & how it had only been tested on humans for 18 mos. (the FDA only approved a
1-yr dosage & the drug co. is not allowed to advertise). The side effects of Lotronex seem mild in comparison to bone cancer.

Sick&Tired, I know what you're saying about those trips.  For a while I was going 30+ times per day!  Now I take Lomotil twice daily and even though I still have the big D, it's only 2-3 times a day and that is totally manageable.  It has been six days since I had one of my awful days, and I'm psyched.

Mayo put me right through to the GI department straight away.  I saw Mangen, a GI attending, and Ghazale, a GI fellow.  They didn't think it was IBS so I didn't do any motility studies.  They sent me for an infectious disease consultation based on my travel history, and I saw Dr. Edson over there.  I had blood and stool tests, upper and lower scopings, and a CT scan.  Stool tests showed occult blood and leukocytes, upper endoscopy showed stomach erosions...but nothing they could definitively diagnose.  They were nice people, and empathized with me, but I was surprised by their reaction - pretty much shrugging their shoulders. "Yes, obviously this is dictating your life; no, it's not normal for people to go 20 times a day and have blood and pus and white blood cells in their stools; unfortunately, we can't tell you what's causing it." It was just a shame that after all that effort - and all those horrible tests - they weren't able to pinpoint the cause and thus streamline the treatment.  My PCP here, who I just saw yesterday, thinks it could still be Crohn's disease, and is helping me keep an eye on things. 

Mayo is not a mecca of healing.  The doctors are specialists, and they're good, but they're still people.  They are still fallible.  If you have a good doctor in your area that you trust, to whom you can go and say, "Listen, I've been reading about this thing, and I wanted your opinion on it" - you're golden.  Mayo may be able to offer a different perspective, but maybe not.  What are you looking for from them?

Hey had 1 other question please, does that Lotronex REALLY get rid of the gas & pain of the gas and the bloating? it has been miserable the last couple wks to the point of waking me up at nite. This pain has just about stepped over the boundry line, i just keep hearing that doc say no more gas , no more of that bloating or pain, i just wanted to ask you if that part is for real? thanks, i appreciate you response. Jenny

Hi Brett! (Or shall I call you The Gravy King?)     Welcome to the IBS forum.
Sucks Lotronex didn't work for you. Hopefully you have found something else that has.
Wow, can't believe how long you have been taking Immodium.... Does you doc feel this is OK? I only ask because this has been a debatable subject (do doctors recommend it or not?) on this forum.

Too bad we can't go back and change our alias's.... The Gravymaster. LOL
Imodium is some powerful stuff, I agree that it shouldn't be used long term. But it sure does work. I can always count on it when I go on trips or am having a bad D day. The only problem, however, is that it backs me up for days. Once I took it before going to Vegas and I didn't poo the whole 5 days I was there. It is sort of a Catch-22 when taking Imodium.
I'm assuming your Monday appointment is tomorrow..... Good luck!! Please come back and share with us your experience.

Hi Brett,
I use to take Immodium every day and my doctor is one of those doctors that are very against Immodium for long term use. He believes that it may have caused my diverticulosis by stopping me up and causing the pressure in my colon. I don't have IBS-D anymore but I do have IBS-C. I'm not sure why but I've heard that Immodium causes motility problems, I hope that I didn't cause it but who knows.

Hi Brett,
Diverticulosis is small pockets in the colon that are caused by pressure that creates weak spots.  Lack of fiber in our diets is the most common reason that people develop it.  It is common in older people however it can affect younger people (I was diagnosed at 27)  If waste gets stuck in the pockets, it can cause diverticulitis.  Diverticulosis never goes away and is only cured by reconnection of the bowel.  Here is a little more info on diverticulitis... I had never heard about it either until I got it:
http://www.mayoclinic.com/invoke.cfm?id=DS00070

7lil, Hows that?

Up in the control panel, edit profile,etc....Hope you like it...LOL

Bye
Brett

Wow, That's really young to have that happen to you. I remember 30. The good old days. Lets pray that you don't have any more bouts.

By the way, I finally got my records from my old gastro doc and was looking things over... My colonscopy from this past June shows no damage so I guess thats a good thing.

Take care too,
Brett

Hi Lil, I don't know why I back, I'll still sign the bottom though.
My new doc said a few interesting things, though no diagnosis yet until I do a few more tests, But after reading my records feels I may have IBD going on. I have to give some blood, but connot go to quest diagnostics as he said they don't know what they're reading half the time.
Interesting thing about the stool sample that he ordered... NO red meat for 2 days before giving the sample, as it shows a false positive for blood sometimes. But he did say to load up on the Fatty foods, like pork fat etc... This is to check for crohns.
He also said that people who have pain all the time is more likely to be IBD and people who's pain goes away shortly after a D episode is a sign of IBS.
My pain is 24 hours a day so he put me back on Entocort. I took that back in Jan. and it kept the pain down, but still had the D. He did'nt think I took it long enough to allow it get through my system.
He also put me on Xanax for panic attacks and anxiety. I told him my old doc had me try wellbuturin and lexipro and he said thats for people who are depressed, not for panic attacks.
I go back dec. 8th to get a cat scan and an ultrasound . He wants to check my bile ducts, pancreas and gallbladder and the outsides of my colon and intestines.
I have to say I am impressed so far and wish I would have gone to a university back in 1993. He talked about sooo much more but I can't remember it all right now, but everything he said made sense. Bottom line is he sounds like he really knows his crap.LOL Pun Intended

Brett
The Gravymaster