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Tried Everything...Aside from Amitiza.


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#1 randomguy

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Posted 09 April 2012 - 07:34 PM

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So its now been 7 years with terrible IBS-C and I literally don't know how much longer I can live with the pain, discomfort and depression that comes with this "syndrome". I have tried numerous products, ranging from SSRI's, to muscle relaxants, dietary changes, osmotic laxatives and laxatives in general, fiber supplementation, fennel, probiotics, amongst many others and am starting to think that I may be trapped in this hell for the rest of my life. I've been getting severely depressed and anxious when I go out in public, as I just feel so awful inside and nothings seems to be working well enough to even carry on with work, relationships or even socializing most times. Seeing friends and family so happy all of the time depresses me more, as I know how I used to feel and missing out on a large part of my life. Being in Canada, I don't have access to Amitiza, as its currently only licensed in the US. I'm wondering if any of you have experienced good results with this medication? I've read several user reviews and found that it has worked for a lot of people, although some side affects were mentioned (I don't care about side affects if it works). The thought of this med helping my condition is urging me to catch the next flight to the US to find a doctor to prescribe some for trial. I will gladly fly down every 2-3 months if I see results, although it would be hard on the budget. I'm hoping that some of you can share your experiences with this medication prior to spending money on travel. I'm desperate to live again and I don't want to be trapped in this state anymore.Replies appreciated.


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#2 Dreyfuss

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Posted 09 April 2012 - 08:11 PM

I just posted a comment which is frightfully similar to yours. Tried all of the meds. Had all of the tests. Have crippling intestinal problems. Well, you can read my comment if you like. I have never paid for Amitiza. The drug reps always leave a large supply with the GI's so samples are always available. I have tried it more than once. No miracle drug for me. I also got some pretty nasty headaches if I recall. I don't think it is legal for me to ship you a box of it. Flying to the states seems pretty extreme. As I stated in my post, I have felt that I have some form of permanent blockage but every test has ruled that out. I am also getting increasingly depressed as I can't do the things I need or want to do. I wish I had better news for you. I have had some minor success with kristalose (generic lactulose). It can be used long term and you can adjust the dosage to whatever may work for you. I believe that it is available in Canada. Do you suffer from any mental illness such as bipolar? That appears to be one my the issues for me.

#3 randomguy

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Posted 10 April 2012 - 12:17 AM

I too have undergone various intrusive testing, all of which found nothing. I also feel as though I have some sort of a blockage (as this is what it feels like), but no one has been able to confirm this. It's been a couple of years since I had an abdominal xray done, so I'll probably go for one soon to double check for growths and/or blockages again. The most frustrating part of this condition is doctors not being able to provide a definitive diagnosis and the lack of treatment options are very hard for a chronically ill person to deal with. I now go to my doctor and he doesn't give me the time of day. Believes that its all in my head and that I just need to "consume more fiber". GI wont see me anymore, as "there's nothing more that they can do for me". That's some support in trying times. I don't even feel like I have a professional to turn to anymore and all of the GI's run on the same database around here, so none of them will see me. I went as far as calling the provincial coordinator to confirm this. If that's not some BS. It's like telling a deaf person they can no longer see a hearing specialist. It's terrible and not having a doctor in my corner makes me feel all the more helpless. If only they could do one day in my shoes he would have a much different outlook. I've found a very small amount of success with taking 6 metamucil capsules, along with 100mg of docusate sodium prior to bed. In the morning I wake up 1-2 hrs before I have anything going on to eat a high fiber breakfast, with a cup of coffee. This usually stimulates some sort of a BM, however my pain and discomfort is usually back within an hour or two (if I'm lucky), as I rarely produce what feels like a complete evacuation. I'm late for everything due to my morning routine and its starting to also stress me out. It's been 5 years of the same morning routine, almost like an OCD condition.I've also been taking Natren Probiotics (Healthy Start - 3 bottle pack, veggie caps) and this helped somewhat with extreme bloating, but over the past week or so, seems to have no affect anymore. I used to take them a couple of years ago and remember the same diminishing affect. I've tried various other brands, including Dr. Ohhira's, but the Natren seems to work the best for me.I don't believe I ever had mental illness prior to being in so much damn pain and discomfort all day (this can have a serious toll on mental well being). I used to be a little bit hyper (anxious), but nothing serious. I now would say that I do have clinical depression and suffer from anxiety, ranging from controllable, to not being able to leave my house as I feel gross inside. The black cloud the accompanies my flare ups makes it very hard, if not sometimes impossible to deal with stressful situations, or people in general. The depression has been getting worse with time as well.I've read a couple of more articles about the affect of SSRI's on the gut and the gut/brain interaction with serotonin. It appears that SSRI's can play a significant role in pain threshold and certain SSRI's increasing intestinal transit times. I tried Zoloft a while back and remember having to quit after the first dose of only 50mg, as the side affects were overbearing (terrible headache, ringing in ears, hangover in the morning, burning stomach, completely out of it and drowsy for 24 hours). I know I probably didn't give it enough time, but the side's were scary. Anyways, I'm hoping to somehow get my hands on Amitiza to rule that out, as I know there are mixed reviews out there. Just knowing that a drug that could potentially help my condition is available cross border and not having direct access to it is driving me nuts. I truly hope that the pharmaceuticals visit sites such as this to try to find a cure to what I would consider one of the most terrible conditions out there. I would pay any price to feel better.

#4 annie7

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Posted 10 April 2012 - 04:50 AM

randomguy---this might be a long shot but--just in case it might help--have you tried resotran--prucalopride (resolor)?resolor (prucalopride) was approved for use in canada in december 2011 under the name of resotran. it is a selective, high affinity 5-HT4 receptor agonist --similar to zelnorm but with a better safety profile--which targets the impaired motility associated with chronic constipation and helps regulate and normalize BM's. you might want to ask your doc about giving that a try. it's been available in europe and the uk since 2009 and has helped a lot of people. and i know the article says it was approved for women---see this thread for more info on that: http://www.ibsgroup....#entry861986but you could still try to get a script for it from your doc. i remember when zelnom was first approved in the usa, it was initially approved for women yet there were men on the board who posted that their docs gave them a script for it and it worked for them.prucalopride hasn't been approved in the usa yet--but we're waiting--impatiently--lol! i know a few people here who've ordered it online from an online canadian pharmacy (you need a script from your doc to do this) and they said it's really helped them. http://www.chrgonlin...l.asp?ID=364862 http://en.wikipedia....rucalopridegood luck to you. hope you can find something to help.

these are just my own thoughts. for expert medical advice please contact a health care professional.


#5 ABNormal

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Posted 10 April 2012 - 02:50 PM

Amitiza did nothing for me. :angry:

#6 imisscake

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Posted 11 April 2012 - 09:59 AM

So its now been 7 years with terrible IBS-C and I literally don't know how much longer I can live with the pain, discomfort and depression that comes with this "syndrome". I have tried numerous products, ranging from SSRI's, to muscle relaxants, dietary changes, osmotic laxatives and laxatives in general, fiber supplementation, fennel, probiotics, amongst many others and am starting to think that I may be trapped in this hell for the rest of my life. I've been getting severely depressed and anxious when I go out in public, as I just feel so awful inside and nothings seems to be working well enough to even carry on with work, relationships or even socializing most times. Seeing friends and family so happy all of the time depresses me more, as I know how I used to feel and missing out on a large part of my life. Being in Canada, I don't have access to Amitiza, as its currently only licensed in the US. I'm wondering if any of you have experienced good results with this medication? I've read several user reviews and found that it has worked for a lot of people, although some side affects were mentioned (I don't care about side affects if it works). The thought of this med helping my condition is urging me to catch the next flight to the US to find a doctor to prescribe some for trial. I will gladly fly down every 2-3 months if I see results, although it would be hard on the budget. I'm hoping that some of you can share your experiences with this medication prior to spending money on travel. I'm desperate to live again and I don't want to be trapped in this state anymore.Replies appreciated.

I was on Amitiza for a few weeks and had to discontinue. I've tried quite a few drugs for IBS-C but this caused unbearable side effects. The nausea, cramps, and headaches made me unable to go to work. Also, it didn't really help with my constipation... :/ I've recently read medical studies that found certain probiotics may help with constipation: -E. Coli Nissle 1917 for 4 weeks (find it on amazon, Mutaflor, but its expensive)-L. Casei Shirota 65 ml/day for 4 weeks (Yakult fermented milk drink) -B. Lactis DN-173010 125 mg/2-3x a day with yogurt strains S. thermophilus and L. bulgaricus (Activia) Also, the books 'A New IBS Solution' by Mark A. Pimentel and Irritable Bowel Solutions by John Hunter bring up some interesting treatment ideas. I've tried the treatments recommended in these books and am starting to feel I'm on my way to finally being somewhat normal in the gut department. All the Best.

#7 Sean

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Posted 11 April 2012 - 03:01 PM

Randomguy, my symptoms are similar to yours. Sadly, Amitiza did not work for me. That should not discourage you from giving it a shot if you have the chance.

#8 vorta enig

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Posted 13 April 2012 - 02:56 PM

So its now been 7 years with terrible IBS-C and I literally don't know how much longer I can live with the pain, discomfort and depression that comes with this "syndrome". I have tried numerous products, ranging from SSRI's, to muscle relaxants, dietary changes, osmotic laxatives and laxatives in general, fiber supplementation, fennel, probiotics, amongst many others and am starting to think that I may be trapped in this hell for the rest of my life. I've been getting severely depressed and anxious when I go out in public, as I just feel so awful inside and nothings seems to be working well enough to even carry on with work, relationships or even socializing most times. Seeing friends and family so happy all of the time depresses me more, as I know how I used to feel and missing out on a large part of my life. Being in Canada, I don't have access to Amitiza, as its currently only licensed in the US. I'm wondering if any of you have experienced good results with this medication? I've read several user reviews and found that it has worked for a lot of people, although some side affects were mentioned (I don't care about side affects if it works). The thought of this med helping my condition is urging me to catch the next flight to the US to find a doctor to prescribe some for trial. I will gladly fly down every 2-3 months if I see results, although it would be hard on the budget. I'm hoping that some of you can share your experiences with this medication prior to spending money on travel. I'm desperate to live again and I don't want to be trapped in this state anymore.Replies appreciated.



#9 vorta enig

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Posted 13 April 2012 - 03:00 PM

So many suffer w/ this. A famous gi dr helped me w/ this formula. 1 cap mirilax w/ 2 senna caps in am. 1 cap mirilax w/ 2 senna caps before bed. Exercise is SO important. Walking is good. Also try to stay calm. Therapy, yoga, tapes all can help. Small frequent meals, less fat.

#10 tourist

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Posted 17 April 2012 - 05:05 PM

I took AMitiza for a couple of months and the only result I got was a headache and huge hole in my bank account. If you're taking a poll, I say, Don't bother with it.

#11 SharonPH

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Posted 19 April 2012 - 12:15 PM

Well, I am new to this website. I ended up in the hospital last October with some sort of "bowel attack;" and have had suffered another attack recently. I had IBS symptoms really bad in my 20's and 30's (am now 58), but my symptoms improved and I kinda forgot about it. I was diagnosed with diverticulosis 8 years ago, and most recently I was diagnosed with severe diverticulosis (Apparently I have the bowels of an "80 year old woman" according to my gastro doc). Anyway, it was believed recently that I had a case of diverticulitis, but a CAT Scan revealed that was not the case. After following a diverticulosis forum for a week or so, it was suggested by some of the members that my case seemed more like IBS symptoms... light bulb went on, and here I am! The reason I mentioned all this was that my gastro doc told me yesterday that the reason for my horrible constipation is a structural one. My diverticulosis has caused my sigmoid colon to harden and the passage is extremely narrow. The function of that part of my colon (as well as the transverse and descending part of my colon, no longer has the "normal" peristaltic motion that keeps things moving. Have you ever had a colonoscopy to rule out diverticulosis?In any event, I have been home ill with this recent attack (SEVERE spasms requiring a visit to the hospital) that was I think, brought on by ignoring my severe constipation (I have a bowel mvt about once every 5 days). So I have been researching constipation like crazy on the internet. Because I had to give my colon a rest, I consumed a liquid diet for 3 days, then when I still had problems after resuming food, another 4 days. I have been slowly adding food back to my diet so some of the things I plan on trying I have not had the opportunity to do so. I will list the things I have researched that have been successful with other people:Before you do anything get a colonoscopy!1. Get a balanced diet: This may seem like a no brainer, but it is important. Cut OUT all refined foods and sugar totally. Look into the PH/acidic foods relationship.2. Get on a good probiotic... make sure it is a good one (refrigeration required) and stay on it! http://www.bestprobi...-reviews.html3. Consider a good enzyme www.advancedbionutritionals.com/ and stay on it!4. Drink plenty of fluids.5. Consider taking Natural Calm Magnesium (I am taking 1/2 rounded tsp with every meal... and a dose before I go to bed... I dissolve it in a large glass of lemon water)6. Exercise...even just briskly walking... every day for at least 45 minutes.7. Try adding golden flax seed flakes to your diet several times a day... works better than phyillium.8. Add psyllium if necessary as well9. Add Miralax if necessaryDON'T PANIC... if you follow the steps above, you WILL get your life back!





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