Ellis - re: IBS

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  • Hi, since the other thread really isn't the appropriate place for us to chat about such a wonderful topic...

    What do I do for my IBS? The biggest thing was accepting that I have it, will have it for the rest of my life, and that I had to learn to live with it. That made SUCH a difference in how I react to an attack, which makes living with it easier. I just deal with it and move on.

    The thing with IBS is that a food that kills you one day won't necessarily the next. There really are no food enemies, other than things like caffeine, gaseous veggies like cabbage, broccoli, etc, high-fat foods, carbonated drinks...things that can upset even "normal" people's guts. We all have different limits on what foods we can tolerate.

    Since there are currently no drugs to specifically treat IBS, I've never taken anything other than Immodium when needed...like when I have to go out for dinner and can't rush home if I need to. However, if they bring back Lotronex, I'll be asking for it. Do you know the Lotronex story? If not, I can fill you in.

    If you don't know about http://www.ibsgroup.org , go there. It's run by a friend of mine here in Toronto. All the current info you need/want is there.

    Sorry to hear we share this. With 1 in 5 people having it, though, there are a lot of us.
  • Oh good grief... it's a good thing I looked at the board! There are new threads!!

    Hi Wildfire!
    No, I don't know the Lotronex story. Fill me in.

    I drink about 4 cups of strong coffee a day, and I'm not giving it up. I'm fortunate in that I stay home during the day. I can go to the bathroom as frequently as I need to. It's when I'm going out that I get nervous. I can easily poo 4 or more times a day. Fascinating topic, huh?
    Just the thought of cabbage gives me a pain in my side. Ouch!

    So what do you eat? You're right... I think one of the big things is acknowledging that you have it. And knowing that you're not the only one with it helps, too.

    Thanks for the link... I HAD been there before, but I'd forgotten about it. I'm going to check it out again and send it to my mom and sister.
  • Ellis, Lotronex was a miracle drug for people with IBS-D (predominantly diarreaha), produced by Glaxo-Smith-Kline. It had gone through trials, was approved, and released in the U.S. Idiot doctors weren't properly informed (like they know anything about IBS anyway! ) and it was prescribed to people who should not have taken it. It can cause severe constipation if not monitored, especially by someone who doesn't suffer from IBS-D. This can result in ischemic colitis (involves a loss of blood flow to a section of the instestine), which requires emergency surgery and can result in death. Well, Ralph Nader and his freaks at Public Citizen petitioned the FDA to ban Lotronex. Why they decided to pick on the ONE hope that we IBS-ers had, I don't know. There are acne drugs on the market than can be more dangerous! Anyway, the FDA pulled the drug, leaving all the people who were being helped by it, helpless once again. Properly monitored, this drug was a lifeline to those suffering from IBS. It gave back lives that had been withering away. The IBS Self Help Group formed a Lotronex Action Group who petitioned the FDA to bring back Lotronex. After more than a year and a LOT of work, a hearing was granted before the FDA Advisory Committee. Several members spoke, told their personal struggles/frustrations/ miseries of how IBS affects everything in their life from work to relationships to quality of life in general. In the end of what was a very long process, the FDA Advisory Committee recommended that Lotronex be brought back under controlled circumstances. When it will reach Canada...who knows...but someday it might. I know people here in Canada who took it ( got it in the U.S.) and said they didn't realize how sick they really were before they took the Lotronex. Being miserable had become such a part of their daily life, they'd forgotten what it was like to feel good.

    Yep, having to go out is a challenge. I work full time in a very busy office, but I can come and go as I need for the bathroom. I prefer to shop alone so I can detour to a bathroom if I need to.

    I pretty much eat what I want, since anything can bother me some times. Carbs tend to be "safe" foods for me, so it's tough to pass them up for fruits and veggies. Fruits, I can tolerate bananas, strawberries, pineapple, sometimes apples and grapes...NO citrus fruit like oranges/grapefruit/tangerines, etc. Veggies, I eat carrots, green/yellow beans, peppers, tomatoes, broccoli in small amounts...if I'm feeling adventurous, I'll have a little corn or onions. Dairy doesn't seem to bother me in small amounts, like some cream cheese or cheddar/mozza/etc...but I can't drink milk. Ice cream isn't great but sometimes I just gotta! I don't eat a lot of red meat, mostly extra lean ground beef and the occasional roast (not the whole roast, but as a dinner! ) I eat chicken and white fish, lean pork now and then.

    I love coffee, but coffee is a stimulant for the digestive system. I drink tea. Peppermint tea or chammomile is good for the gut, if you like them. Peppermint is a smooth muscle relaxer, and can sometimes help with gut cramps. I usually drink plain old Red Rose, sometimes an Earl Grey. I completely gave up pop months ago, so I mostly drink water.

    How long have you had IBS? There is some thought that it might be hereditary. My mom had it, and several aunts do, and I believe my sister does as well. Current research shows that it is actually a "short circuit" between the gut and the brain somewhere that causes things to go out of whack, either speeding the gut up or slowing it down.

    I always knew I had a screw loose somewhere.
  • Hi Wildfire...
    Happy Birthday, sweetie!! Is your age a secret? Are you pre-meno, post-meno, full swing... or something else? I'm pushing 38, and I think I've got some of the pre-symptoms.

    Uh huh... I tend to eat a lot of carbs.
    I'm like you... anything can bother me at different times depending on....? So I pretty much eat what I want, too. Apples give me a weird pang, so I don't eat them too often. High fat meals are a no-no for me. I'm talking about a hot dinner. If we go out to visit friends and they've made Chicken Cordon Bleu, I'll think, "Yum!! But damn... my bowels!!"

    How long have YOU had it? I'm not sure how long I've had it. I've been at home with my children for almost 14 years, so it really hasn't been a huge issue for me. It's funny... since you started talking about it the other day, I've started noticing the symptoms again. I suppose I've become so used to them that they mostly go unnoticed.
    I suppose the worst times for me is if I'm going out to the theatre or something similar. I try not to eat or drink anything a few hours before I go out.

    I CAN'T drink tea! It causes me terrible pain! Of course, I can drink herbal teas, but I usually stick to my coffee. I also suffer from depression, and coffee and depression just go hand-in-hand for a lot of people. Hey, I've got to have SOME vices!!

    I'm similar to you in my meat eating.

    I was checking out the IBS site last night... thanks again! There really ARE a lot of people that suffer from it!
  • Girls, can't talk too long because I have to go to work tomorrow but wanted to say that I was diagnosed with IBS when I was 19years old. One of my sisters has it and so does my father.
    I have the primarily diarrhea type as well. Have had those horrible embarrasing moments. That has greatly contributed to my anxiety disorder. Fear of going out and getting sick.

    Anyway, lotronex was a seratonin based medication. Any of the SSRI's(selective seratonin reuptake inhibitors, ie prozac, paxil, celexa, zoloft,etc.) can help with IBS-D because seratonin acts on the neurotransmitters in the gut as well as the neurotransmitters in the brain. the SSRIs that are on the market now impact on the brain as well as the bowel. Lotronex bypassed the brain and only affected the neurology of the bowel. There is a good but very medical book out called the second brain, its about the neurotranmitters in the bowel and about how the bowel works independently of the brain in terms of having its own nervous system. (with its own neurotransmitters and receptors) anyone who did well on Lotronex would probably benefit from a trial of Paxil or one of the other SSRIs and should definitely talk to their doctor about it or at least read the second brain. I have found that treatment of my anxiety disorder with SSRIs all but cured my IBS. One of my clients is a gastoenterologist and he said that he prescribes Paxil all of the time for patients with IBS. its not that they need an antidepressant its that they need more serotonin in their gut.

    Love, Soozie.
  • Soozie, the thing with Paxil is that it is highly addictive. Anti-depressants prescribed as a treatment for IBS are a fraction of a normal dose if it is not to be used to treat depression as well, but some people just can't get past the "needing an anti-depressant...it's all in your head" thinking. Many IBS patients do well on anti-D's. I believe Lotronex affected 5HT3 receptors in the gut. I am familiar with the The Second Brain. Luckily, I've managed to survive without taking any prescription drugs. *knock on wood* But, given the chance, I would try Lotronex. Isn't it amazing in our wee little Alternative world that three of us share this?

    ellis, thanks for the b-day wishes! Age is no secret..I'm 33. It's usually the sorbitol in apples that bothers some people...have you tried eating them without the peel? I've had IBS for nine years now.
  • I can't believe it!! Since you've brought the subject up; Wildfire, I've got full-blown IBS!!! THANK YOU VERY MUCH!!!
    Seriously, I've had D for two days, and last night when we were grocery shopping I was EXTREMELY uncomfortable. And even as I speak, there's some sort of pain in my gut. Which I'm pretty sure is there all the time, but I just never notice it.

    Apples without the peel? That's the best part, honey!
  • Hi wildfire. paxil isn't addictive but it can have a nasty discontinuation syndrome...meaning its hard to go off of it...its not the same as withdrawing from an addictive drug but it is nasty...i've withdrawn off of it myself twice. Still even so, its a great drug for the gut. My main complaints with it are weight gain and sexual dysfunction. I would say that for IBS you would probably need at least 20 mgs of Paxil which would improve mood as well as help with IBS. Did you read the second brain? I heard the author speak on NPR. He was pretty impressive. Ran out and bought the book right away. Started reading it and I'm like...okay, okay I get this...and then it keeps getting more and more detailed and more complex and then I was alittle overwhelmed...kept having to put it down and say, huh???

    I love his sense of humor though...I think that anyone who works in that part of physiology needs a sense of humor...I once went to a grand rounds where everyone was eating their lunch and this guy was speaking about number one and number two and problems with bladder and bowel control...he didn't crack one joke and here we were all eating while he's talking about poop...I thought, buddy, you are in the wrong field!!! How can you talk to a room of people who are eating their lunch and not make one joke about the fact that your discussing anus biofeedback while we mangia!!!????

    Oh well, Ellis, just talk to your digestive track and tell it to chill out...meditate on it...and pray for calm down there!!!! (and keep some immodium in your purse!! Love, Soozie
  • Aha! There's that IBS thread. I was thinking about it the other night when we took the kids to Red Lobster. Half-way through my meal my stomach started to churn. By the time we were ready to leave, my colon was twisted around my spine and lungs, and a very peculiar expression had taken over my face (according to my daughter).
    When we got home, my mother-in-law was at the door waiting to see us. I spent the entire time she was here in the bathroom. (hmmm, should try that more often...)
  • Awwww, poor ellis. I hope your gut has settled down since. Life with IBS sucks, doesn't it? You never know when, where, or how long it will hit.

    Yesterday in the car coming home from work we were stopped on the off-ramp for the highway and I was watching a red-tailed hawk riding the thermals in a nearby field and sighed how beautiful he was. Hubby looked at me like I was nuts. I told him I want to be a bird. He asked, "Why, so you can crap on people's cars all day? " I said, "Well, I wouldn't have to worry about IBS anymore, would I?"
  • That's too good, Wildfire...

    I woke up this morning and thought, "Next year I am going to run a 5k." And then I remembered a story about a woman running a marathon who (probably had IBS) had diarrhea while she was running, and it ran down her legs.
  • HAHA...
    Poor lady in the marathon must have been pretty determined! Yucko! But really Ellis... that would be a fabulous goal to run a 5k next year. That is one of my goals... I want to be able to run 5k by the New Year and then in the spring I will sign up for an actual event. We can both do it... however, we can skip the butt dribbles.
  • Okay, we'll do it, Sojo! And the following year... we'll meet in NY or Boston and run the marathon.
  • Remind me to never again have a Whopper with fries. It didn't sit well.
  • Maybe I can add something here. While I've never had the condition, I am familiar with a website that offers good information surrounding this topic.

    I would recommend a visit to: www.breakingtheviciouscycle.org

    Hope this helps - Terri