living with IBS for 31 years

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. 

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

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!" 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!

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 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. 

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! 

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.

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.

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