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my symptoms of constipation are worsening dispite diet changes, i've tried miralax for monthes last year and caused horrible lingering odor didnt improve constipation either. recently had botox injections for anismus yet struggling with constipation stool constinsy. stool softners dont work either, my list of effective laxitives is shortned to senna, ex-lax or enema's which i cant take on days im working. just extermely frustrated since i got treatment for anismus which slighty improved things yet the slow moblity i've always had, is the main culprit. i asked the surgeon who did my botox what i do when the laxitives quit working and he told me i have the option of having a bag. so i guess either way i'm screwed. i'm a 28 year old women and feel like i'm being robbed of my self confidence,goals and how i want to live my life. i'm also doing biofeedback which shows i relaxe my muscles just fine. it doesnt matter how much cooked veggies or canned pumpkin i eat i still cant poop. sitz marker showed i'm severly constipated. i'm being told by doctors that my rectocele is not symptomatic yet dont understand how they know that. i want a second opinion for another surgeon yet not sure how i go about getting seen be a second specialist.
hi lizz,i was very sorry to read about your struggles
i can so relate to your story, cuz it's like reading about my self. sounds like you have a slow transit time, which can (not certain) indicate colonic inertia (CI). how long have you been suffering with constipation?PLEASE don't lose hope yet. i suffered with CI for 16 years, i got to a point where NOTHING helped anymore and had to have my colon removed. please google "total colectomy part 3" (1 and 2 are hard to find). you'll get a thread that is part of a forum, on this thread you'll find dozens of women who suffered with sever chronic constipation that came to a point that nothing helped any more and had to have a total colectomy. in this surgery they remove your whole colon except for the rectum and attach the small intestine to your rectum - so NO bag is needed. there is a small precentage that end up with a bag, but maybe 90% are doing just fine and don't need a bag.i strongly recommend you read those total colectomy threads from part 3 to 36 (that's where we are now). you will learn so much by reading these threads - there's a wealth of information there about CI, the surgery and it's outcome. and this info is priceless, cuz the best info is reading about those who went through it themselves, something no dr will or can give you. please know that there's still MUCH hope for you. please let me know if you found the threads. you can also follow this link http://www.healingwell.com/community/default.aspx?f=33&m=276914 best wishes and keep me posted.
 

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hi lizz,i was very sorry to read about your struggles
i can so relate to your story, cuz it's like reading about my self. sounds like you have a slow transit time, which can (not certain) indicate colonic inertia (CI). how long have you been suffering with constipation?PLEASE don't lose hope yet. i suffered with CI for 16 years, i got to a point where NOTHING helped anymore and had to have my colon removed. please google "total colectomy part 3" (1 and 2 are hard to find). you'll get a thread that is part of a forum, on this thread you'll find dozens of women who suffered with sever chronic constipation that came to a point that nothing helped any more and had to have a total colectomy. in this surgery they remove your whole colon except for the rectum and attach the small intestine to your rectum - so NO bag is needed. there is a small precentage that end up with a bag, but maybe 90% are doing just fine and don't need a bag.i strongly recommend you read those total colectomy threads from part 3 to 36 (that's where we are now). you will learn so much by reading these threads - there's a wealth of information there about CI, the surgery and it's outcome. and this info is priceless, cuz the best info is reading about those who went through it themselves, something no dr will or can give you. please know that there's still MUCH hope for you. please let me know if you found the threads. you can also follow this link http://www.healingwell.com/community/default.aspx?f=33&m=276914 best wishes and keep me posted.
 

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i've dealt with constipation lifelong and has just gotten worse. i really believe i can benefit with resection surgery and not have a bag, yet my surgeon continues to tell me he wont consider reconnecting because i have anismus. i know i have anismus because of slow transit, yet gi, surgeon & p.therapist all continue to tell me slow transit is caused from anismus.
so this is his reason why reconnecting will fail & says it does in people who have it done with anismus. he also told me that botox and physical therapy will improve anismus and when that happens the rectocele (which he said is nonsympathmatic?)will reduce and start to repair itself, i will always need some form of laxitive lifelong. i was then told that people who don't have improvement with p.t come in to his office complaining about there problems and aren't happy unless the get coloestomy bag because there not doing what they should be, dont want to, have alot of personal/emotional issues they need to deal with instead. ok, well what about the people who do everything that is suggested spend a insane amount of $ to get better then don't get improvement? yes, i am depressed obviously that is from what i'm dealing with physically. apparently even if i choose to go through surgery i will be classified into a "cope out" catergory from a medical professional. it's hard enough having the courage to talk to a doctor about pooping now how do i find a specalist that i can feel understands,listens and will explain my test results clearly with me. (i had to request my own personal copies).also my kegals and relaxation is perfect on biofeedback. i know this is alot of venting, thanks for the encouragement alwayshappy
i'm def going check out the forum/thread
there is some truth in what your surgoen says, but i can't totally agree. true that even with removing the colon, if you have anismus, the anismus will always be in the way, BUT, it also depends on: 1. the severity of the anismus, and 2. not less important - whether the motility of your small bowel is ok. it's very different for each person and even by doing ALL the tests needed, it's not always easy to evaluate who will benefit from surgery and who won't. first of all, i think that if the zits marker test shows a sever slowing transit time in you colon, then removing it will relief you, even if you will still have defecating problems. and if the motility of your small bowel is normal, then even with anismus, you'll still have relief with this op. yes, you may still need to take some laxatives/suppositories etc, but it'll be so much easier to manage than now, that i can promise you for certain.actually, and to be honest, my story is not one of the successful ones. i had CI for 16 yrs. i finally had a colectomy with ileorectal anastomosis (laparoscopic) a year ago, but unfortunately, it was good only for the first 2-3 months, then i started with constipation again. the reason for it was: 1.anismus 2.it turned out my small intestine is also very slow (they didn't do me the motility test of the small bowel before the colectomy to make sure it's not affected). but even so i was still constipated, i still feel SO much better w/o the colon - just by having it removed i had great relief AND once the colon is out, the constipation is much easier to manage. but anyway, i still couldn't have quality of life and spent too many hours in the b/r every morning, so eventually with the advice of my drs and other drs i consulted with and from what i've learned my self, i've decided to go for the bag. i had an ileostomy surgery on July 8th of this year and i can honestly say that first of all, i feel so much better with the bag - the rectum (and the anismus) is not in the way anymore, thus things are flowing much better, and second, i've realized that living with an ostomy is so not the end of the world, it doesn't bother me AT ALL, it doesn't require so much work, takes only couple minutes to empty the bag and maybe 5-10 minutes tops to change the wafer (changing wafer every 4-5 days). i actually find it so convenient and much much easier to deal with than dealing with constipation and having to spend many many hours in the b/r every day. it doesn't show, doesn't smell and it's totally quiet... i actually just LOVE my stomee
:) she's the best thing that happened to me. but i must remind you that most ppl don't end up with a bag and there are many success stories.again, there is some truth in what your drs say, you can try the biofeedback as your drs suggested, and if it doesn't work, your drs and you will think what to do next. if eventually you feel they're not cooporating, then seeking for a second and even a third opinion will be your next move.
 

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Discussion Starter · #8 ·
there is some truth in what your surgoen says, but i can't totally agree. true that even with removing the colon, if you have anismus, the anismus will always be in the way, BUT, it also depends on: 1. the severity of the anismus, and 2. not less important - whether the motility of your small bowel is ok. it's very different for each person and even by doing ALL the tests needed, it's not always easy to evaluate who will benefit from surgery and who won't. first of all, i think that if the zits marker test shows a sever slowing transit time in you colon, then removing it will relief you, even if you will still have defecating problems. and if the motility of your small bowel is normal, then even with anismus, you'll still have relief with this op. yes, you may still need to take some laxatives/suppositories etc, but it'll be so much easier to manage than now, that i can promise you for certain.actually, and to be honest, my story is not one of the successful ones. i had CI for 16 yrs. i finally had a colectomy with ileorectal anastomosis (laparoscopic) a year ago, but unfortunately, it was good only for the first 2-3 months, then i started with constipation again. the reason for it was: 1.anismus 2.it turned out my small intestine is also very slow (they didn't do me the motility test of the small bowel before the colectomy to make sure it's not affected). but even so i was still constipated, i still feel SO much better w/o the colon - just by having it removed i had great relief AND once the colon is out, the constipation is much easier to manage. but anyway, i still couldn't have quality of life and spent too many hours in the b/r every morning, so eventually with the advice of my drs and other drs i consulted with and from what i've learned my self, i've decided to go for the bag. i had an ileostomy surgery on July 8th of this year and i can honestly say that first of all, i feel so much better with the bag - the rectum (and the anismus) is not in the way anymore, thus things are flowing much better, and second, i've realized that living with an ostomy is so not the end of the world, it doesn't bother me AT ALL, it doesn't require so much work, takes only couple minutes to empty the bag and maybe 5-10 minutes tops to change the wafer (changing wafer every 4-5 days). i actually find it so convenient and much much easier to deal with than dealing with constipation and having to spend many many hours in the b/r every day. it doesn't show, doesn't smell and it's totally quiet... i actually just LOVE my stomee
:) she's the best thing that happened to me. but i must remind you that most ppl don't end up with a bag and there are many success stories.again, there is some truth in what your drs say, you can try the biofeedback as your drs suggested, and if it doesn't work, your drs and you will think what to do next. if eventually you feel they're not cooporating, then seeking for a second and even a third opinion will be your next move.
i have gotten some slight improvement with biofeedback & botox. did you know you had anismus before surgery? i had zits test and it showed doc's severe constipation. i'm glad to hear you have relief with the ostomy.
 

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i have gotten some slight improvement with biofeedback & botox. did you know you had anismus before surgery? i had zits test and it showed doc's severe constipation. i'm glad to hear you have relief with the ostomy.
yes, we knew before the colectomy i had anismus, but my surgeon thought that once the colon is out, the anismus won't bother me so much, since having no colon the output is supposed to be liquidy, so it'll be easy for me to expell. plus, the defecography test i did short time before my colectomy was normal, so we were very optimistic. his theory could have been true IF i had a normal motility of the small bowel, but unfortunately i don't, something he didn't think will happen. if the motility of my small bowel was normal, then the anismus alone would have been managable.i'm glad to hear biofeedback and the botox helped you some. if so, then maybe you should continue with this, you may reach good results. i think if the zits test shows a slow transit time, then surgery could be an option for you, BUT before that your drs must exhaust all options, and sending you to biofeedback is part of the proccess. i know it requires so much patience and i know when you're in pain you don't have much of that, but you have to cooporate with them through the process. also, it's very important to take care of the anismus as best as possible before the surgery (not sure why, but that's what all drs say). i hope today is a good day for you. keep me posted.
 

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yes, we knew before the colectomy i had anismus, but my surgeon thought that once the colon is out, the anismus won't bother me so much, since having no colon the output is supposed to be liquidy, so it'll be easy for me to expell. plus, the defecography test i did short time before my colectomy was normal, so we were very optimistic. his theory could have been true IF i had a normal motility of the small bowel, but unfortunately i don't, something he didn't think will happen. if the motility of my small bowel was normal, then the anismus alone would have been managable.i'm glad to hear biofeedback and the botox helped you some. if so, then maybe you should continue with this, you may reach good results. i think if the zits test shows a slow transit time, then surgery could be an option for you, BUT before that your drs must exhaust all options, and sending you to biofeedback is part of the proccess. i know it requires so much patience and i know when you're in pain you don't have much of that, but you have to cooporate with them through the process. also, it's very important to take care of the anismus as best as possible before the surgery (not sure why, but that's what all drs say). i hope today is a good day for you. keep me posted.
Do you have to eat a certain way with having the bag?
 

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Do you have to eat a certain way with having the bag?
magnet,right after a person go through a colectomy and an ileostomy surgery he must keep a low residue/low fiber diet, which means no fiberous foods like whole grain whean, rice etc, no fresh fruits and vegies esp the skin - it doesn't absorb and can get stuck mostly at the opening of the stoma and cause a blockage, no seeds, nuts, grains, beans. foods like mango, avocado, popcorn, hot dogs (b/c of the skin) are highly dangerous. the low residue/low fiber diet includes: white bread, pasta, potatoes, chicken, white rice, dairy (if you don't have lactose intolerance), fish, eggs - anything that has the least residue - i don't remember all of it, but you can google "low residue diet" and see the full list of foods.but after few weeks, the small intestine is adapted to the new situation and starts doing a bit of the colon's job and more foods can be introduced, but everyone is different and what works for some, doesn't work for others. most ostomates eventually reach to a point where they can eat everything, but there's always a bigger risk with the resctricted foods for a blockage, esp if the person has adhesions or a slow small intestine (like mine). i will ALWAYS have to stick to the low residue diet, b/c of my slow motility of my small intestine. i also can't tolerate dairy - it slows me down even more and can cause a blockage - i just dared and ate a certain cheese that i SOOO love, just 2 tiny bites and within 30 min i got THE worst blockage like cramps, took some pain meds, walked around and thankfully it passed. it's not the first time i'm daring this, and it was like that every time, so i guess i'd better behave if i don't want to end up at the ER.anyways, ppl with normal motility of their small intestine and that have no intolarences, after the adapting period they can eat almost anything. but again everyone is different and it's mostly a triel and error thing, some ppl keep a food jurnal and see which foods work for them and which don't.
 

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my symptoms of constipation are worsening dispite diet changes, i've tried miralax for monthes last year and caused horrible lingering odor didnt improve constipation either. recently had botox injections for anismus yet struggling with constipation stool constinsy. stool softners dont work either, my list of effective laxitives is shortned to senna, ex-lax or enema's which i cant take on days im working. just extermely frustrated since i got treatment for anismus which slighty improved things yet the slow moblity i've always had, is the main culprit. i asked the surgeon who did my botox what i do when the laxitives quit working and he told me i have the option of having a bag. so i guess either way i'm screwed. i'm a 28 year old women and feel like i'm being robbed of my self confidence,goals and how i want to live my life. i'm also doing biofeedback which shows i relaxe my muscles just fine. it doesnt matter how much cooked veggies or canned pumpkin i eat i still cant poop. sitz marker showed i'm severly constipated. i'm being told by doctors that my rectocele is not symptomatic yet dont understand how they know that. i want a second opinion for another surgeon yet not sure how i go about getting seen be a second specialist.
 

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Hi i am a 43 old female and have had lots of problems with my bowel now fro 6yrs. I have had to big opp's which haven't worked i've only just been told that the condition is call Anismus. my symptons of server constipation i've tried changing my diet with no change, i have had all the upto date laxitives even the newest which is called resol try that one!! my cons has said i've a choice of an nerve simulation injection but not found enough about that working or a bag. Myself i want my life back to something normal that my bowel doesn't rule my life so i am thinking for the bag option unless i get some good response to the nerve stimulation. so if anyone knows about that i'd love to hear from you.To get a second specialist is easy you can keep the one you've got and go to your gp and ask for a second oppion and go from there.
 

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Your issues are the same as mine. I have also received botox. I have found the addition of the powdered magnesium (Peter Gillham's Natural Calm magnesium supplement) to be very helpful. I take some morning and night. The output is more liquid but I am fairly regular now. That being said, the dosage is a moving target. My body can build up a reserve so I cut back, then I sense the reserve going down so I increase the dosage. Currently I take 1/8 tsp morning and night, but I have been on it for a while. At first I was taking a couple of tsp every night. (I also take a 500mg vitamin C tab, 1/6 exlax cube and 1/2 tablet MOM everynight. When I added the magnesium is when I really felt a difference).
 
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Hello everyone,I am 42 yrs old male that suffered from anismus or better known as pelvic floor dyssynergia for the past 8 yrs. After visiting some of the best GI doctors here in Los Angeles, and biofeedback at UCLA, and virtually tried every laxative that is available except milk magnesium. I gave up the hope for this cure and had a loop colostomy at july 08. I was happy overall that I could eat pretty much everything but always feel ashamed of being not normal to fit into the social life and dating. So, ultimately, I regreted the decision of colostomy and decided to get a reversal surgery on Feb of 2010. Well, after a week of reconnection, I had a leakage due to straining when I was in the toilet, and rushed to the ER. At ER, the same surgeons that did my first surgery said I have no choice but to get another end colostomy. So, I had my 2nd colostomy at feb, 2010. For the entire year, I prepared my 2nd reversal and still hoping to have a normal life someday. I bought this pelvic floor excerciser, http://www.pelvexiser.com/usa/women.html and along with kegel's peristal and started doing biofeedback daily. Oct,2010, I went for my 3rd anal manometry, and the doctor said that the result showed improvement and he said another colon reconnection should be fine.April 1st just last Fri, I went for my 4th surgery for my colon reconnection. I just came home today but can feel that anismus is still there and I still hava a lot of work to do. I welcome any candid conversation and inputs with anyone of you. You can call me at 909-524-6242 pacifict time at anytime if you have suggestions to me or need suggestions regarding to your condition. Being myself that has suffered and gone thru so much for the past decade, My heart really goes out to the people that suffer from this syndrome. My fight is far from over at this point, but I am glad that I am not alone. Gold bless you all! james
 

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Hello everyone,I am 42 yrs old male that suffered from anismus or better known as pelvic floor dyssynergia for the past 8 yrs. After visiting some of the best GI doctors here in Los Angeles, and biofeedback at UCLA, and virtually tried every laxative that is available except milk magnesium. I gave up the hope for this cure and had a loop colostomy at july 08. I was happy overall that I could eat pretty much everything but always feel ashamed of being not normal to fit into the social life and dating. So, ultimately, I regreted the decision of colostomy and decided to get a reversal surgery on Feb of 2010. Well, after a week of reconnection, I had a leakage due to straining when I was in the toilet, and rushed to the ER. At ER, the same surgeons that did my first surgery said I have no choice but to get another end colostomy. So, I had my 2nd colostomy at feb, 2010. For the entire year, I prepared my 2nd reversal and still hoping to have a normal life someday. I bought this pelvic floor excerciser, http://www.pelvexiser.com/usa/women.html and along with kegel's peristal and started doing biofeedback daily. Oct,2010, I went for my 3rd anal manometry, and the doctor said that the result showed improvement and he said another colon reconnection should be fine.April 1st just last Fri, I went for my 4th surgery for my colon reconnection. I just came home today but can feel that anismus is still there and I still hava a lot of work to do. I welcome any candid conversation and inputs with anyone of you. You can call me at 909-524-6242 pacifict time at anytime if you have suggestions to me or need suggestions regarding to your condition. Being myself that has suffered and gone thru so much for the past decade, My heart really goes out to the people that suffer from this syndrome. My fight is far from over at this point, but I am glad that I am not alone. Gold bless you all! james
It seems my puborectalis has shrink.I tried to do "butt stretching" and beleive it or not the hole diameter is quite small and not elastic much.No worder why stuff get trapped left and rigth side too.It seems like a muscle disorder of the sphincters.Have you heard of Baclofen pump or injection in the butt muscle?
 

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OK so .... since I was a kid i would have one bowel movement per week, big (like a bear) and painful at times.... anyhow never seen a doctor for it, just became the norm. until I hit 31 in 2008, sudden onset of horrible constipation felt like I was gonna die! doctors just thought it was anxiety so mental health treatment + laxatives... now 3yrs later I've had every test under the sun, I was diagnosed with anismus, yet i disagreed due to once in a while I'd get the "urge" to go, if I made it there quick I could pass a solid stool without much problem so they did an anemometry and that came back as "Colonic Inertia" and the typical treatment being removal of the colon and re-attachment to the anus 50/50 chance it will help or get worse.... so had a consultation with a surgeon , he more or less ignored the colonic enertia diagnosis and said it goes hand in hand with the anismus and the only treatment is an ileostomy (you know with a bag) I am not going to do it! noway! because I beleive that if my large intestine would gain it's inertia and give me the feeling of a "push" or "urge" i could pass the stools fine ...... I heard about a new treatment for Colonic Inertia called "pacing" 2 electrodes and 2 sensors placed on the large intestine with either an internal or external pacemaker (not sure which) that has shown to stimulate the natural inertia of the intestine/colon and produce a bowel movement without all the laxatives and in a good % after time the unit was removed and people have continued with little to NONE issues having a regular bowel movement. this surgeon pissed me off as he insisted an ileostomy was the ONLY treatment.
 
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