living with IBS for 31 years

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sabre 1
New Member


Date Joined Jul 2007
Total Posts : 5
   Posted 9/8/2007 5:10 AM (GMT -7)   
I am new to these forums, so I apologize in advance if I do something wrong.
I have been living with IBS for 31 years now, and still no relief.  I take upteen medications that only help alleviate my syptoms, which most of them don't work.  I haven't worked since 1999, doctor ordered.  I am on disability, for the severe Ibs. 
I am looking for someone to talk to, that truly knows and feels what I am experiencing.  It truly sucks to be sick all the time, it also is nerve racking not to be able to work and help support my family.  I take medications for depression too... ya think?   I hate doctors, I have had so many, and all of them have something different to say, different diagnosis, none of them willing to really help, I've been told it's all in my head too.  I know it is not, but it took a long time before realizing this.  I don't socialize much, everyone asking "oh what do you do for a living" and to me it is so embarassing to say what's really going on, I usually lie.  I do have a specialist that seems to genuinely care, he is helping me more than my last doctor of 15 years.  But I still need support from others like me so that I know I'm not alone, that there are others out there like me, with the same syptoms.  I'm also curious what medications other people are taking, maybe something I can bring up to my own doctor.  He is so "afraid" to put me on something new.  I have severe pain, and he is reluctant to give me pain relievers but doesn't say why other than these medications can cause constipation. at this point I really don't give a hoot. 
I would love to be able to discuss with someone. help support them too, I am really hoping someone will respond  to this message.  Actually I am begging.  I have a wife and a family, but I feel so alone with my illness.  My wife is a great supporter for me, but I still need someone who has already been there, someone who knows basically exactly what I feel, what I go thru, etc,etc.  Someone please help. 

shelly1979
Regular Member


Date Joined May 2006
Total Posts : 164
   Posted 9/8/2007 5:39 AM (GMT -7)   

Hi sabre!

You have come to a good place to talk about this.  What are your symptoms?  Are you IBS-D, C, or A (alternates between diarreha & constipation)? 

I have only had IBS-D for a year & a half now, but it has totally changed my life so I know what you are saying.  It is frustrating.  It is scary at times because you wonder if it is really IBS.  For example, I worry that it could be something worse causing my diarrhea everyday.  I've heen to 2 GI specialist, plus my normal Dr.  They all say the same thing.  I personally believe they think I'm crazy...which really makes me upset.  Itis true that this IBS drives me crazy! tongue

Let us know what kind of IBS you have an I know you will get some reassuring words.

shelly


sabre 1
New Member


Date Joined Jul 2007
Total Posts : 5
   Posted 9/8/2007 5:52 AM (GMT -7)   
Shelly
Wow, that was a quick response! Frankly, I didn't think anyone would respond to me. I have IBS-A. Altho my doctor thinks it is more of IBS-C. He says I get diahhrea because I am "full of it" and when it won't pass, I get diahrea as an "overflow". Sometimes I can go to the bathroom 5 times in half an hour. Basically I LIVE in the bathroom, I can't do anything or go anywhere unless there is a bathroom nearby. And for me, it's too degrading and embarassing to be out and about and then have to find a bathroom, most people just don't understand. They think you are sick from a certain cause, like the flu or ate something bad and that I'll "get over it". Others think, including some doctors think that it's all in my head. Been there, done that. I really don't give a rat's butt to what other people think, but I hope you know what I mean. This is the first time, after months of prodding from my wife, that I've spoken about my IBS outside the family. So this is strange for me. To be talking to a stranger. But my wife says that anyone who responds is not a stranger, they are someone just like me. Thanks so much for responding to my message.

swtpeach
Regular Member


Date Joined Sep 2007
Total Posts : 25
   Posted 9/8/2007 9:14 AM (GMT -7)   
Hi Sabre~

I am so sorry IBS has taken so much away from you. I have suffered from IBS for 28 or so years. For me it is nausea and IBS-A, though I tend to have C more than D. I have been on vacations, felt fine and then next minute I am needing to find a bathroom pronto with severe D and cramping. It is embarrassing and frustrating ... I can so relate.

I have just recently pursued a GI doc, where as before I was just seeing my PCP. I have always been told I have a "nervous stomach" and I too have been told it is all in my head. I have been told I "just need to calm down" or "stop worrying and you will get better". It is maddening.

As of right now I have been prescribed Zoloft. I was first given Paxil CR but I was having more nausea and I was not crazy about the all the other side effects, so they switched me. I am only in the beginning stages so I am not sure how this will pan out.

I just wanted to mainly let you know you are not alone. Read through this site. I have found some very helpful advice.

Erin

Canyonbabe711
Veteran Member


Date Joined Mar 2006
Total Posts : 1451
   Posted 9/8/2007 3:41 PM (GMT -7)   

This is a great and knowledgable group of people though we are all different in what we can tolerate food and medicine wise and our lifestyles are all different as we have all ages. Right now my IbS is in remission so to speak. Often we find things that will trigger attacks so a food diary is one thing that is often recommended. Another things it probiotics, either Digestive Advantage for IBS or another type from the drug store or health food store. I would say those are the main things that I have seen come up the most. One thing that many people are bothered by are the artificial sweetners so you might try avoiding them totally.

I have certainly never heard a Dr. say that about being so full of it that it causes diahrea and frankly that makes no sense to me as usually when we are constipated it is because the stools are just too hard and not moving properly so I don't know why that would suddenly turn to loose stools. Perhaps someone else has heard that. We have people on this forum that do go for weeks and people that go all day longs so you will find a good cross section of people. I am glad you have a new Dr that is trying to help. Frankly, they don't seem to know what to do but never seem to mention some of the things we see on here that help.

Everyone here is experiencing in some degree what you are so don't hesitate to say anything. It is a subject that can be somewhat embarrassing until you realize it is something we all share, unfortunately. Welcome

 

 


Fluffytwo
Regular Member


Date Joined Sep 2006
Total Posts : 100
   Posted 9/8/2007 6:55 PM (GMT -7)   
What makes me mad is when a Gastro dr. after a colonoscopy says learn to live with it.

They are not in the bathroom all day and afraid to go away.

Have had IBS for over 25 years. What a bummer.

Fluffytwo

gutastrophe
Regular Member


Date Joined Jul 2007
Total Posts : 319
   Posted 9/8/2007 11:40 PM (GMT -7)   
Canyonbabe711 said...

I have certainly never heard a Dr. say that about being so full of it that it causes diahrea and frankly that makes no sense to me as usually when we are constipated it is because the stools are just too hard and not moving properly so I don't know why that would suddenly turn to loose stools. Perhaps someone else has heard that. We have people on this forum that do go for weeks and people that go all day longs so you will find a good cross section of people. I am glad you have a new Dr that is trying to help. Frankly, they don't seem to know what to do but never seem to mention some of the things we see on here that help.

Actually canyon, this is true.  My GI specialist and GP told me the same thing.  So did my naturopath. Rarely is a constipated person completely full of stool.  More often, there are large pockets of stool throughout the colon that won't move.  When this occurs, undigested food from the top of the intestines will shoot around the obstructions and come out in the form of D.  But it is really food that has not gone through the digestive process which removes the liquid and forms it into stool.
 
Sabre, your story sounds alot like mine.  I was first diagnosed with "spastic colon" way back in the early 80's.  So it's been a long journey for me as well.  I've gone through at least a dozen GI docs.  All of them were "the best in the field!" confused I've taken every drug imaginable to relieve C and D, pain and bloating, gas and cramping, anxiety and depression and on and on.  I have finally realized that for every drug they give to treat one symptom, another one arises.  When I took the anti-spasmodics, I ended up with C.  When I took the motility accelerators, I ended up with out of control D.  With everything I took, the pain was unrelenting.  Even narcotics do not provide relief from intestinal distress and in fact, add to it by constipating you even more.  That's the last thing you want.  Fiber supplements can help but they are not a permanent solution.  And you must be cautious with the ones you take.  For people who tend to C, fiber supplements with psyllium husk are the kiss of death.  IBS'ers do best with the insoluble fibers and even better when you can get this through food.  Laxatives are doomed to fail as well because your body becomes dependent on them, the bowel loses it's muscle tone and forgets how to function on it's own.  Meanwhile, the pain continues and we are supposed to go about our days like everything is okey dokey!  Practically impossible, huh?  And of course, people don't understand because you can't see IBS and those of us who suffer are usually too embarrassed to talk about it.  After all, how many conversations do you have with people about poo???? 
So for me, I no longer go to "doctors" of western medicine.  I see a naturopath who is taking a more comprehensive approach to my debiliating condition.  Naturopathic doctors devote a great portion of their education and careers to the study of the human digestive system.  They do not isolate the anatomy from the human person either.  They look at nutrition, lifestyle, the impact of other organ behavior (gall bladder, liver, pancreas), bacteria, enzymes, etc.  In my opinion, they have much more to offer for the IBS sufferer than GI docs who come to a diagnosis based on what you don't have and then leave you to fend for yourself.  This has been my experience with every doc I've had.
So please know you are not alone.  And kudos to your wife for encouraging you to come out of your shell!

SnowyLynne
Veteran Member


Date Joined Apr 2004
Total Posts : 1539
   Posted 9/9/2007 3:46 AM (GMT -7)   
I have had IBS D since the 80's.Was told to use Metmucil which worked for me & after 3 yrs on it & stopped it & did fine until 10 yrs ago & was rediagnosed with IBS D in Feb.this yr.I take Pamine Forte for it & it has been a Godsend after wearing depends most of the last 10yrs.Don't need them anymore.Yes IBS vasilates from D to C thats the nature of IBS.I had the gas,some pain & uncomfortable feeling but It doesn't have me.I just keep on keeping on.
SnowyLynne


softy
Veteran Member


Date Joined Jun 2004
Total Posts : 798
   Posted 9/9/2007 10:29 AM (GMT -7)   
Hi Sabre,
 
You are not alone.  I'm glad to hear you have a supportive wife.  I too have IBS-A with severe bouts of pain & nausea or added enjoyment.  My doctor also says chronic C causes my D.  All I know is one day I literally poop my pants sad only to not go to the bathroom again for 5 days.  I never know from one day to the next what I'll feel like and how many times I'll need the bathroom.
 
I take Metamucil, probiotics, fish oil capsules, ginger capsules and amitriptyline.  Amitriptlyine is an anti-depressant which, in my doctors words, turns down the volume of pain.  There are numerous studies to back it's effectiveness for pain control.  I've been on it for 2 months and seems to be doing just that.
 
I know the "it's in your head" diagnosis.  At the start of all this the doctors thought I had Crohn's and after exhaustive tests revealed nothing I was sent to a psychiatrist.  Sometimes, I honestly wish it were.  I'm now back at the GI's going through more tests as my persistent symptoms won't let me give up. 
 
I'm curious Sabre, where is your pain?  Can you describe it and does it vary in intensity?  This is my worst symptom that causes me the most grief. 
 
Keep posting/reading and know there are many people who are just like you. 
 
Take care, Softy
 


Canyonbabe711
Veteran Member


Date Joined Mar 2006
Total Posts : 1451
   Posted 9/9/2007 3:18 PM (GMT -7)   
If that is true then why are do people have to take a laxative? I would think it would take care of itself. I know you are saying what you have been told but I have never heard of anyone that was constipated that then gets diahrea. They seem to stay constipated till they take an enema, laxative or stool softener.

SnowyLynne
Veteran Member


Date Joined Apr 2004
Total Posts : 1539
   Posted 9/9/2007 5:58 PM (GMT -7)   
Metamucil basically stablizes the bowel movements & keeps things more normal than without it.It is a bulking agent not a laxative.


SnowyLynne


Canyonbabe711
Veteran Member


Date Joined Mar 2006
Total Posts : 1451
   Posted 9/9/2007 6:07 PM (GMT -7)   
I am talking about constipation turning into diahrea. I think that must be very rare.

gutastrophe
Regular Member


Date Joined Jul 2007
Total Posts : 319
   Posted 9/9/2007 9:24 PM (GMT -7)   
Canyonbabe711 said...
If that is true then why are do people have to take a laxative? I would think it would take care of itself. I know you are saying what you have been told but I have never heard of anyone that was constipated that then gets diahrea. They seem to stay constipated till they take an enema, laxative or stool softener.
There are many types of constipation.  Severe cases where bowels "plug" the intestines often required laxitive or colonic solutions.  The colon is completely full of stool or impacted so nothing will come out. 
Other forms of constipation can include "pockets" of stool throughout the colon.  People with IBS don't have the type of peristaltic action that a normal bowel has.  Our contractions often come in spasm or waves so that the colon doesn't completely empty itself.  The result can be that stool remains in parts of the colon for longer than it should, becoming hard and difficult to pass.  In this situation, food will slip around these "obstacles" without going through the complete digestive process and come out in the form of D. 
If we had "normal" bowels, the kind that propel in one fluid motion to expel the contents of the colon, then this type of constipation might take care of itself.  But when your colon only moves it's contents in spasms, you end up feeling like you haven't completely finished, like there is still more there.  That's usually because there is! 

sabre 1
New Member


Date Joined Jul 2007
Total Posts : 5
   Posted 9/9/2007 9:42 PM (GMT -7)   
Hi, I am Sabre1's wife, I'd just like to thank all of you for responding, I knew he would get support here, as I too use a forum regarding my back surgeries.  Anyway, my husband is regarded as a "case study".  His health and records have been brought up numerous times in New York while his physician attended meeting there.  He is considered one of the worst cases of severe IBS.  He has also had liver and pancreas problems as a result of his severe IBS, that have almost killed him.  I don't know how many times we have been to the emergency room in the past ( he refuses to go now,after so many doctors) with jaundice and excruciating pain.  His pain ranges from under his ribcage, and all quadrants of the stomach region.  along with lower back pain.  Yes, he does have diahhrea but the docs diagnos him with IBS-A.  Mainly IBS-C.  He has had multiple surgeries, and has been thru every test imaginable more than once.  His IBS literally controls every aspect of his life.  We've done all the journaling, the food, the activities (triggers), he's been to dieticians, everything, nothing "really" helps him. And it's true, one medication for relief in one area creates a problem in another.  He hasn't seen the light at the end of the tunnel for years and   wonder if he ever will.  I've seen him  spend almost an entire day in the bathroom.  Diahhrea, then constipation, it's like having constipated diahhrea if that makes any sense.  Keep posting, as he is amazed over all the responses., I encourage him   to continue reading, and he has a few posts to reply to  as a few of them sound like his identical twins!  He has taken all the metmucil type meds,  the digestive advantage, prescribed meds and over the counter.  He has been on amitriptyline for years but recently stopped taking the drug   due to it's lack of response in his body.  He really isn't on much these days, Amitiza is one, compazine for the nausea ( which we are trying to "change" to something stronger), a powder that he mixes in with water twice a day (it's supposed to help him go with out all the other side effects of other laxatives), and percoset for the excruciating "attacks" he gets occaisionally and would rather feel some relief then and pay the consequences later.  He is also on disability   and was told by "their doctors" that he is Type A typical addison's disease. He's been  diagnosed with everything possible, chrons, lupus, are the more familiar ones.  In the beginning it was a "nervous stomach" at age 10.  Nervous stomach, oversensitive "insides", spastic colon.  Like I said he's been on every medicine you can think of.  But when the docs run the tests to  confirm their diagnosis, everything comes back false.  So as you can see, he is fed up with doctors, fed up   with his health.  He is curious as to who else is out there and what they are taking  for meds, etc, how they live their lives, how they survive.  He needs someone to talk to, and I don't mean a shrink, we tried that, that didn't work either.  But he does take meds presribed from a shrink to help control his mind from constantly running, worrying, anxiety and stress, as we all know that these things are triggers for IBS too.  Well that's about all I have to say right now.  Thankyou all for your responses.  don't make it an argument over whether this could be happening or not.  With this I mean the argument of diahhrea vs. constipation.  It is not as simple as saying he has one or the other, he has both, how does one deal with that all their life?  his loving wife and caretaker. yeah

softy
Veteran Member


Date Joined Jun 2004
Total Posts : 798
   Posted 9/10/2007 8:43 AM (GMT -7)   
Hi Sabres wife and Sabre;
 
I'm curious if he ever had a capsule endoscopy (camera pill) to check out his small intestine, I'm sure he has but just asking.
 
I've had IBS since I was a child but only in the last 5 years has it completely consumed my life to the point of ... (don't ever want to go there again) for unrelenting 24/7 right sided pain with no known cause or cure.  As for the D vs. C issue, all I know is I can go 5 days without a bowel movement then mess my pants with D.  Other times I start off in the bathroom with hard C and over the course of the next hour end up with D and by the time I'm finished I need a nap as I'm literally exhausted. 
 
I'm really happy to hear he has a supportive wife to help him through this as it is a lonely illness which can cause one to alienate themself from others.  Keep posting and perhaps something of value for you both may come up.
 
 
Take care, Softy
 


gutastrophe
Regular Member


Date Joined Jul 2007
Total Posts : 319
   Posted 9/10/2007 9:18 AM (GMT -7)   
Sabre and Sabre's wife,
Have you tried seeing a naturopathic doctor?  I'm not talking reike and crystals here.  I am talking about licensed doctors of naturopathy.

sabre 1
New Member


Date Joined Jul 2007
Total Posts : 5
   Posted 9/10/2007 6:50 PM (GMT -7)   
I'm not sure what a naturopathic doctor is, and how to go about finding one, especially where we live, here in hickville Iowa. It definetly sounds like something I should seek out, if you could give me any information, it would be greatly appreciated. Thankyou so much for all the responses, they have definetly helped. I can't believe how many people suffer from this affliction. will post another message soon, am having difficulties with my computer. Till next time then Sabre 1 and the wife.

gutastrophe
Regular Member


Date Joined Jul 2007
Total Posts : 319
   Posted 9/10/2007 10:27 PM (GMT -7)   

The AANP is a Seattle-based organization whose members have completed four years of academic training at the doctoral level and who are licensed or could be licensed and who want the profession regulated. Its directory lists about 500 members. Generally, this group favors extensive scientific education and licensing. It represents something of a cross between traditional naturopathy and conventional medicine and would like to achieve the status of primary care physicians. These naturopaths are trained in clinical pathology and use many conventional diagnostic procedures including, x-rays, electrocardiograms, ultrasound, and clinical laboratory tests to make a conventional western diagnosis. These practitioners also make a diagnosis using physical and laboratory procedures to access nutritional status, metabolic function and toxic load. They may use virtually any known natural remedy, which is viewed as a great advantage because it allows tailoring of the remedy to the individual without the need for multiple referrals. They perform minor surgeries, prescribe drugs, deliver babies, and diagnose and treat illness. In those states where they are licensed their role is much like a family practitioner or internist. When treating serious illness, they may choose to work jointly with the patient’s doctor, as their training recognizes that conventional healthcare is sometimes necessary.

 

Sabre, I found this link which lists naturopaths in Iowa.  You can select the city closest to where you live.

http://www.magicyellow.com/category/Naturopathic_Physicians/Cities.html


Sarita
Veteran Member


Date Joined Mar 2005
Total Posts : 2486
   Posted 9/10/2007 10:43 PM (GMT -7)   

I know this might sound bogus coming from a D.O.-to-be (not selling anything - I'm a medical student), but you might consider seeing a D.O. who has experience with osteopathic manipulative medicine (OMM).  D.O.s learn the same embryology, histology, anatomy, biochemistry, pathology, pharmacology, microbiology, etc. as M.D.s (four years of post-graduate education) but they have an additional educational component of OMM.  They are able to perform surgery, prescribe meds, etc. (they can specialize in anything, including GI or neuro or internal medicine - same as an M.D.) There are peer-reviewed studies on the effectiveness of OMM in the treatment of irritable bowel syndrome.  Essentially, it's manual treatment of the musculoskeletal system.  I first experienced OMM as a pre-med after a car accident.  Really amazing stuff.  I could tell you more about it but I might bore you to tears talking about myotendinous junctions and the like.


Co-moderator - IBS Forum


mitzi64
New Member


Date Joined Sep 2007
Total Posts : 4
   Posted 9/13/2007 6:10 AM (GMT -7)   
Hi Im just new to the forum I have had ibs-d for 3 years and have been told to take Imodium. I only have D but it extremely bad, Ive had many accidents even just coughing. If anybody has any suggestions it would be great. I must admit reading stories of those of you who have suffered for up to 31 years is a bit scarey. Im open to suggestions.

oneday
Regular Member


Date Joined Nov 2006
Total Posts : 175
   Posted 9/13/2007 9:32 AM (GMT -7)   
hi ya i to am in constnat pain. it is so bad sometimes thta i canet get out of bed. my gp precribed strong pian killers and anitdepressants. i hvae tryed anitspasmotics and nothnig helps ease my pian. it effects my life so much as if i do go out half the time i end up giong ho,me due to pian. i to hvae deppression due to thsi and another condtion i hvae. i undersatnd how yuo feel. i aslo told my gp thta i didnet care abuot pian relivef cansuing constpaion.

mini mouse
Regular Member


Date Joined Sep 2007
Total Posts : 25
   Posted 9/17/2007 2:27 AM (GMT -7)   
Hi im new to the forum, ive had IBS-D for 9 months now, id like to sugest to anyone out there to try VSL#3, its given me my life back! My D has reduced from 15-30 times per day to 3 more solid motions. Good luck!

sabre 1
New Member


Date Joined Jul 2007
Total Posts : 5
   Posted 9/17/2007 5:02 AM (GMT -7)   
Hello, ok mini mouse what the heck is VSL#3?  Never heard of it. 
 
To all of you out there, I greatly appreciate all your responses. Although it is sad to realize that so many people suffer from IBS, one way or another, it is good to know that I have much support from all of you.  I'd like to take this to the next step.  I am looking for someone to talk to on a regular basis, via the e-mail or MSN messenger, away from the forum, on a more personal level.  My wife found such a person on her spine forum, it is good for her to talk to this person everyday.  they have become good friends, and experience the same problems with their back.  they don't really know each other from Adam, but they talk everyday, they are good for each other's support.  That is what I am looking for.  There are so many of you that experience what I experience, you can relate to me more than say my wife could.  Anyone interested just post a reply and I'll give you my e-mail address.  I haven't gotten MSN messenger up and running yet (my wife's job), as we have a different, newer computer that she is still playing around with.  Hope to hear from someone.  thanks  Sabre1

gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 9/27/2007 4:29 PM (GMT -7)   
Hi Sabre I had IBS for 27 years one of the things I found to reduce pain is go to the bathroom as soon as you get the urge. They now have liquid air fresheners that a person can carry to put a few drops in that reduces odour so makes a person feel better using toilets that are public or friends. I have tried dicetel for IBS .I have been DX with crohns disease now and am on the forum for that. I know it is hard to live in pain and the constant not knowing when a person must use the bathroom. I can relate to this life .I will say one thing and that is it helps to find things to do at home that make you happy. I garden and have my birds coming to the step. Both these things are peaceful and give me exercise as well as a good mental attitude which are very good sress releavers.I enjoy improving things. Anything you wish to discuss about IBS feel free to ask away. My MSN is there if you wish to send an E- Mail I am not on here every day though and will reply if you send a meeage just mention it is IBS related. lol gail

Canyonbabe711
Veteran Member


Date Joined Mar 2006
Total Posts : 1451
   Posted 9/27/2007 5:52 PM (GMT -7)   
That link is pretty useless. It lists about 200 places in my city including our hospital and various medical HMO's. I seriously doubt that any of the Doctors on the list for my city are naturopaths as I know some of them. I don't understand it at all but they did have a Spay-neuter clinic on it. Are Naturopathic physicians also MD's? or I should say is this a requirement? If so do they go thru a normal residency and internship. I think in some cases they could be very helpful even if not but I would draw the line at minor surgery for someone that is not an MD or DO.
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