# anyone else just give up and basically homebound?



## onyx (Jan 13, 2006)

Ten years with chronic IBS-D. Had a couple years where it seemed to maybe be easing a bit, but came back with a vengeance. Have tried endless remedies - supplements, drugs, diets, acupuncture, hypnosis, etc. Nothing has allowed me to regain any semblence of normal life. Has devestated my life in many ways including relationships, career, ability to travel, financial stability, family, self-worth, etc.

I'm exhausted trying to fight it, and think I need to just accept that I'm basically going to be homebound and alone. I can make it out for short jaunts here and there, but basically have no capacity to live a planned, structured life away from the bathroom. Have D 5-10 times a day sometimes, other days I'm ok, but of course I never know when those will be, so can't make any real plans.

Wondering if others have reached this point and how they cope with it. How do you support yourself? How do you keep your spirits up? How do you deal with the loneliness?


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## Trudyg (Aug 16, 2002)

First off, no one promised life would be easy and pleasant. This is where you are, so how do you make the best of it? You can lay back and give up or you can educate yourself about this disease and start changing your life to see what works to improve it. Have you tried the calcium? the immodium ( I was taking 12 every single day so I could work)? changing your diet? Eating a pizza, having D and them griping about how life's not fair doesn't get you anywhere or any friends--you have a condition for which you must alter your lifestyle/diet/etc. There is no one out there who will figure it out for you, you must do it on your own. So, stand up and get started. We here will sympathize with you but only you can change yourself. Yes, it's terrible to not be able to go out whenever you want. But, it's not the end of the world--you aren't blind, in a wheelchair, having chemo are you? You can do this but it requires effort.


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## overitnow (Nov 25, 2001)

Tough love is always the most difficult type to try to give. It took me 10 years to find my treatment. The day before I started to see the beginning of the change, I could have thrown myself out of the window. Because I was taking it for another reason, I had no expectation that I would have any improvement, ever. That was July of 98. My digestive health stated to improve in about 6 weeks. A year later, I was "overitnow." 12 years later life is very good, indeed. You can always take a break from looking for help; but burying yourself away won't work forever.

My best to yu.

Mark


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## Brownish72 (Aug 26, 2012)

I've been in this position too. Its as if anger overcomes the reality whats happening. My IBS-D controlled my life for years. However, the 1st thing that helped me was accepting that I had a problem. By accepting it, I was able than to say "how am I going to overcome this". What diets have you tried? SCD, GAPS, Paleo all are very efficient, safe ways of overcoming IBS-D. However, it takes patience. These can take weeks, months, years to work. However, results can many times be seen within a day or two of starting, but its the ongoing diet that will help you achieve success and take back your life. SCD took me from 8 Immodiums a day, PPI's, and other stuff.to completely off medication within 60 days. I however wanted to try and explore other options for "quicker" results. I have now decided intermittent fasting with a amino acid / vitamin product will help me the best to see best results, however each case is unique.

Find you niche, and stick to it. I really was happy with the Simple Carbohydrate Diet, as lined out in "Breaking the Vicious Cycle", and although I am no longer 100% on this diet, I still follow it quite closely.

Good luck, hope you find something that works for you


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## Trudyg (Aug 16, 2002)

I'm so glad for you that you recall a time when life was good because you didn't have ibs. I have had it my entire life--I recall crapping my pants in kindergarten and having to walk home, in messed pants, by myselft because my mother was tired of cleaning me up. (Poor parenting is a whole nother subject). Yes, I have kids. 4 of my own and 2 adopted. We chose to live out in the country so they could run and play--I didn't have to watch them quite so closely and could squat behind a bush if need be. But, going out in public was hell. I homeschooled them all to avoid the daily drop/pickup. I had to cook what they all liked but couldn't eat it myself--birthday cake, holiday dinners. It was not fun. I had to go to work just as the youngest was starting high school, so got off my tail and started research into how to fix this. Over the 20+ years that I have actively participated in fixing myself, I have had some successes and many failures. Only the last 5 years hve things gotten better but still not perfect. I wasted a lot of time staying at home. Now, I have the issue by the tail and am actively fighting back. Doctors are worthless, you have to do it yourself. I am sorry if I sound harsh; I understand and sympathize, but you really have to be proactive if you want progress.


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## faze action (Aug 6, 2009)

When my SIBO/IBS symptoms were at their worst (and I still wasn't physically homebound then) I seriously considered trying to change careers and find a job where I could work from home. I'm really glad I didn't, and kept searching for help until I got it. Now, because of that, I have learned so much more about SIBO and my body and can cope much, much better. I even learned that I have food sensitivites that I wasn't aware of, etc.

I think when GI issues get really, really bad that it can change a person's thinking, both because of the physical symptoms and a change in mentality that is caused by the gut being out of whack (I mean this not in the sens that a person can't cope when things get bad, but in the sense that most of the body's neurotransmitters, etc reside in the gut. When there is a problem I think the "chemical balance" or whatever you want to call it is negatively affected).

The short answer? Don't give up!!!


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## FullyCured (Nov 15, 2012)

Taking Paxil saved me after a living with IBS-D my whole life. See my story for more details and let me know if you have any questions in regards to the medication.


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## Trudyg (Aug 16, 2002)

I, too, thought I'd not be able to eat out. But, guess what? I was in a nice place (parent's anniv) and wasn't going to eat & the waitress asked what was wrong. I explained I had a food intolerance, she said she had ibs and what would work for me? Told her grilled/baked chicken or fish but no oil at all and she fixed me right up. Plain baked potato, steamed green beans w/o butter or seasoning. She said they do this all the time, you just have to ask. Since then, I've asked at lots of places and most are very willing to make something special--depends on how busy they are and your attitude, but you can do it.


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## onyx (Jan 13, 2006)

Lancschic said:


> Yes I'm housebound but can't be forever I will need to get a job soon... They don't pay sick pay for IBS apparently its an easy illness to live with so the UK say. I am very lonely luckily I have my kids and hubby... I take around 6 imodiums and take my daughter to the park the evenings only due to going most of the day! Have I given up? Yes... I've tried loads things nothing works nothing comes close! Doctors say sort my depression out but I can't because ibs is causing it... I wasn't depressed before it I was so happy loving life now its got me its put me in a dark place. People say everyone suffers an illness but that's not actually true I'd rather suffer something at an older age.. Rather than have this for the rest of my life at the age of 26 my life is already over due to ibs! I wish doctors would take ibs most seriously and find something better than imodiums or even find a cure, but I very much doubt they ever will! So yes my life is staying in my house 24/7 due to being scared of outside toilets also accidents they scare me the most! Who really wants to ###### thierselves! Know one listens to me anyway so I've given up! I hope one day they do find something that helps us! If I didn't have my children I wouldn't be here what is the point in living if you can't enjoy life... We only get one shot and this is what we get? Nice!


Lanc, sorry you feel as miserable as I do about all this. Wish you didn't have it but thanks for your response as it makes me feel not so alone and crazy. I feel *exactly* as you do. I have other physical issues, but I've always found some way to manage them somehow. But this unrelenting IBS is just a dealbreaker. I just have no freedom or mobility with this looming over me all the time. You are right also that the doctors have no empathy. All they do is repeat that it won't turn into "something serious". Ok that's great, but it doesn't really help me solve my problem, which feels pretty serious to me as it's stopped me dead in my tracks for a decade.


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## onyx (Jan 13, 2006)

Trudyg said:


> First off, no one promised life would be easy and pleasant. This is where you are, so how do you make the best of it? You can lay back and give up or you can educate yourself about this disease and start changing your life to see what works to improve it. Have you tried the calcium? the immodium ( I was taking 12 every single day so I could work)? changing your diet? Eating a pizza, having D and them griping about how life's not fair doesn't get you anywhere or any friends--you have a condition for which you must alter your lifestyle/diet/etc. There is no one out there who will figure it out for you, you must do it on your own. So, stand up and get started. We here will sympathize with you but only you can change yourself. Yes, it's terrible to not be able to go out whenever you want. But, it's not the end of the world--you aren't blind, in a wheelchair, having chemo are you? You can do this but it requires effort.


Hi Trudy, I suppose this reply was given in the spirit of "tough love", which I appreciate. However I can assure you I have already been quite self-motivated and aggressive in trying to get better, for many years now. Here's a snapshot:

5 GI doctors, a naturopath, and 2 acupuncturists

colonoscopies
endoscopies
ultrasound
countless stool tests
fructose-intolerance test

imodium
lomotil
calcium
questran
welchol
sucralfate
anti-depressents (both tricyclics & SSRIs)
probiotics
various other supplments from naturopath
anti-fungals (had yeast overgrowth indicated on one test)

diets: dairy-free, wheat/gluten free, low-carb, low-fat

self-hypnosis 100 day program (made it 70 days)

acupuncture / chinese herbs

trigger point therapy

books and more books, research papers, online articles, forums, etc

So you see, I've not exactly just been laying about, hoping things would get better. Also, I'm not looking for sympathy. I'm simply looking for help on now to cope with an incurable disease which has severely limited my freedom and mobility. In any case thanks for the reply as it's always good to be reminded not to give up, even though in my heart I feel I have.


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## onyx (Jan 13, 2006)

overitnow said:


> Tough love is always the most difficult type to try to give. It took me 10 years to find my treatment. The day before I started to see the beginning of the change, I could have thrown myself out of the window. Because I was taking it for another reason, I had no expectation that I would have any improvement, ever. That was July of 98. My digestive health stated to improve in about 6 weeks. A year later, I was "overitnow." 12 years later life is very good, indeed. You can always take a break from looking for help; but burying yourself away won't work forever.
> 
> My best to yu.
> 
> Mark


Hi Mark, yeah I think maybe the only help I'm looking for these days is now to try and structure my life going forward, given that I doubt I'll ever truly recover at this point. If anything I seem to just get worse with time. For many years I kept my former life "on hold" thinking I was just going through a phase, but after ten years I think I have to face facts. There are many many diseases which are incurable and for which there are few treatments that work for symptoms. It may be at least in my case that my IBS is unfixable in any measureable way. So the question then is, what do I do? I can barely leave my house. Can't maintain relationships very well, can't hold down a solid job, can't travel, can't this, can't that.

I've read some of your posts over the years and always wondered, do you think you really had IBS? Or maybe you had some other condition that mimicked it? Has the supplement you take ever worked for anyone else? I'm just curious, not trying to put you on the spot about it. I just wonder if some of the anecdotal reports I've read of people who say things like "I had IBS, then I tried this special honey, now I'm fine" or "I had IBS but now I don't eat pizza and everything's great" ... I wonder if these people really had IBS in the first place (whatever that is of course, given that the doctors don't even seem to really know).

Anyway thanks for the encouragement, I will try not to completely give up searching forever, maybe just for now as I'm exhausted and beyond heartbroken over it all at this point.


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## FullyCured (Nov 15, 2012)

onyx said:


> Hi Trudy, I suppose this reply was given in the spirit of "tough love", which I appreciate. However I can assure you I have already been quite self-motivated and aggressive in trying to get better, for many years now. Here's a snapshot:
> 
> 5 GI doctors, a naturopath, and 2 acupuncturists
> 
> ...


Have you considered seeing a psychologist or psychiatrist?


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## onyx (Jan 13, 2006)

Brownish72 said:


> ... I really was happy with the Simple Carbohydrate Diet, as lined out in "Breaking the Vicious Cycle"...


Ok, I admit, that's a new one to me. I'll check into it, thank you.


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## onyx (Jan 13, 2006)

faze action said:


> ...I think when GI issues get really, really bad that it can change a person's thinking...


That I can gaurantee is true in my case. Believe it or not, I used to be a rather upbeat, fun-loving kind of guy. Had a great social life, girlfriends, etc. But I've become rather cynical and anxious though this. I think my mindset is the result, not the cause of my problems, but it doesn't help that's for sure. Still, how to keep a positive attitude, year after year, when no real progress is made, and you're watching your life just pass by?


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## onyx (Jan 13, 2006)

FullyCured said:


> Taking Paxil saved me after a living with IBS-D my whole life. See my story for more details and let me know if you have any questions in regards to the medication.


Interesting, I'm on Paxil right now, but it's a low-dose intended to help me with my GERD pain, which is another story. I wonder if upping the dose might help.


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## onyx (Jan 13, 2006)

Trudyg said:


> I, too, thought I'd not be able to eat out. But, guess what? I was in a nice place (parent's anniv) and wasn't going to eat & the waitress asked what was wrong. I explained I had a food intolerance, she said she had ibs and what would work for me? Told her grilled/baked chicken or fish but no oil at all and she fixed me right up. Plain baked potato, steamed green beans w/o butter or seasoning. She said they do this all the time, you just have to ask. Since then, I've asked at lots of places and most are very willing to make something special--depends on how busy they are and your attitude, but you can do it.


To date I have never been able to find a single correlation between my diet and symptoms. Go figure. If I knew what my triggers were, then at least I could try and plan around them. But as it stands, it's entirely unpredictible. That's what causes me all the trauma whenever I try and leave the house. I uncounsciously start looking around for bathrooms, and backup bathrooms to those just in case (like the other day at the groc. store when a huge line of kids from an earlier softball game took over the bathroom).


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## onyx (Jan 13, 2006)

FullyCured said:


> Have you considered seeing a psychologist or psychiatrist?


Yep, I've thought about it, maybe could help talk through some of this stuff and give me some comfort. But I went thru therapy years ago and kind of already mined that ground. However perhaps I could find someone who could simply give me some ways to cope better, so I don't completely go off the deep end.


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## FullyCured (Nov 15, 2012)

onyx said:


> Yep, I've thought about it, maybe could help talk through some of this stuff and give me some comfort. But I went thru therapy years ago and kind of already mined that ground. However perhaps I could find someone who could simply give me some ways to cope better, so I don't completely go off the deep end.


I don't know how open you are to it, but you can also consider talking to a psychiatrist (prescribes medicine). For me, I hit the point were I was just suffering and would do ANYTHING for a way out. I was prescribed multiple anti-depresents/anti-anxiety medications and Paxil ended up doing it for. I was in your exact shoes 5-6 years ago and never thought I could ever be completely cured. Might be worth just talking to someone and seeing what your options are.

My cost/benefit analysis went something like this: Live the rest of my life under a rock constantly in fear of being away from a bathroom vs. take a risk (potential for mild to serious side effects) for a chance at a real life. However that is something you'll have to decide for yourself - just want to get you thinking about other alternatives.


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## FullyCured (Nov 15, 2012)

onyx said:


> Interesting, I'm on Paxil right now, but it's a low-dose intended to help me with my GERD pain, which is another story. I wonder if upping the dose might help.


What dosage are you on? I think I was taking 40mg before bed (170-180lbs at the time)


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## onyx (Jan 13, 2006)

FullyCured said:


> ... just want to get you thinking about other alternatives...


Thanks, that's probably a good idea. Lately I've come to feel there aren't any alternatives left, but I'll try to at least keep my mind open.


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## onyx (Jan 13, 2006)

FullyCured said:


> What dosage are you on? I think I was taking 40mg before bed (170-180lbs at the time)


only 12.5 mg .. it's not meant to have anti-depressent effect .. just meant to as a kind of pain modulator for my reflux pain (different issue) ... but I'll talk to my doc about upping the dose if it might help stop the endless D


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## FullyCured (Nov 15, 2012)

onyx said:


> Thanks, that's probably a good idea. Lately I've come to feel there aren't any alternatives left, but I'll try to at least keep my mind open.


One of the most important things is to keep and open mind and stay positive. You WILL find a way out, its just a matter of time. If your issue is anxiety driven (only a doctor can help you determine that), the way I look at it (in hindsight of course) is your mind has for some reason been conditioned to react a certain way in certain situations. For people like us, we have been conditioned to deeply fear this specific scenario, and we cannot let it go and it therefore causes our intestines to tense up and contract, causing D. Besides monks (who meditate everyday - I highly recommend it) this is the bane of most of the Western worlds existence (aka most of us cannot live freely and in the moment). All that needs to be done (again assuming it is anxiety driven) is to break this viscous cycle of always thinking about it. The good news is as a human, you are constantly becoming reconditioned to think a certain way, act a certain way etc. This is just something you need to work past, whether it be from training your mind to not think of it (meditation), taking the assistance of drugs, or some other method I may not be familiar with. IT CAN BE DONE THOUGH so never give up hope! There is a light at the end of the tunnel and as soon as you know you will eventually reach it, the sooner you will get there. The key is to be both patient and optimistic in that vision. I know that its easier said than done but I have experienced it all first hand and can tell you its absolutely true. Again, this is just how I see the situation in hindsight and I hope that helps.


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## BQ (May 22, 2000)

Anxiety or fear can aggravate D... so unless one learns how to manage the fear, with the help of a mental health professional if need be, one might be spinning one's wheels.


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## FullyCured (Nov 15, 2012)

Lancschic said:


> I am waiting to see my gp about hynotherapy... They is a guy here who does it on the nhs he's ment to be the best. I need to be refered by my gp though and its a hell of a waiting list but may aswell try it what have I got to lose? I've tried nearly everything else! I don't even believe ibs is real I think maybe we all have parasites they don't test for, candida or low gut flora. I believe ibs is for I don't know what's wrong with you so ill call it ibs that's why someone people are fine on diet change! That isn't fixing the problem that's masking it? Why was I ok to eat most things for 20 odd years and I was mostly C which didn't bother me really. Then one day I wake up with D like its a stomach bug yet I didn't have the stomach flu? I don't get it! I think I need to be tested for fungal also but my gp won't do no more tests grrr! I don't know if I'm seeing my GI again you have to go through your gp here in the UK! I've also heard loads tests come back negative for celiac disease the only way to really test is down throat endoscopy rather than a blood test! I will try that trudy I'm nervous as hell though to eat outside. I know that can make it worse maybe I should do it for my children maybe I could have a small portion and loads of imodium. I am going to keep trying to find out what works because I need to.


Lanschic, I thought the same thing - "maybe I had something no one knew about." However my problem turned out to be 100% mental. And I agree, IBS is commonly the illness GIs place everything they can't figure out.


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## FullyCured (Nov 15, 2012)

BQ said:


> Anxiety or fear can aggravate D... so unless one learns how to manage the fear, with the help of a mental health professional if need be, one might be spinning one's wheels.


BQ, sometimes (at least in my situation), IBS-D was completely from anxiety and fear. So for some people that might be the main problem they need to tackle. This is sometimes that last thing people think about after they tried everything else. And sometimes people never figure it out - I was lucky to have doctors who would refer me to the next person who could maybe help me (GI --> Psychologist --> Psychiatrist).


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## Trudyg (Aug 16, 2002)

For me, it's a vicious cycle. I have a stressful day and then something triggers the D, so now I'm sweating and nervous about can I make it to the restroom. Once there, I'm self-conscious about getting back to work, people noticing how long I'm in there, comments about odor. When I come out, I worry about them noticing that I'm going back in again so soon......Then the stress if can I get home okay because I tend to go fast because I really, really need to get there. Once there, gosh I hope no one's in there (only have 1). Of course I can't eat, so then I worry about putting something in my tummy to keep it calm. By now even the dog is yapping stressfully----Paxil or vodka sounds really good! But, you can't live like that--you'd have a nervous breakdown. This is a chicken or egg question--did you have a panic attack and it caused an asthma attack? or did you have an asthma attack that caused a panic attack? No real answer, just the effects. Here's a thing to try--get some peppermint schnappes. Have half a shot or so, it works.


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## FullyCured (Nov 15, 2012)

Trudyg said:


> For me, it's a vicious cycle. I have a stressful day and then something triggers the D, so now I'm sweating and nervous about can I make it to the restroom. Once there, I'm self-conscious about getting back to work, people noticing how long I'm in there, comments about odor. When I come out, I worry about them noticing that I'm going back in again so soon......Then the stress if can I get home okay because I tend to go fast because I really, really need to get there. Once there, gosh I hope no one's in there (only have 1). Of course I can't eat, so then I worry about putting something in my tummy to keep it calm. By now even the dog is yapping stressfully----Paxil or vodka sounds really good! But, you can't live like that--you'd have a nervous breakdown. This is a chicken or egg question--did you have a panic attack and it caused an asthma attack? or did you have an asthma attack that caused a panic attack? No real answer, just the effects. Here's a thing to try--get some peppermint schnappes. Have half a shot or so, it works.


Paxil did it for me. Took it for 3-4 years. Started working fairly quickly and once I got off I was still completely cured. Your symptoms sounded EXACTLY like mine. Maybe worth seeing a psychiatrist since it sounds like pure anxiety.


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## FullyCured (Nov 15, 2012)

Lancschic said:


> Mines not because I'm mental if that's what your getting at I don't need to see a phychiatrist... I was so happy with life it was perfect took us 6 years to try for my daughter so trust me I was fine! I just woke up one day with D and it never went away. I didn't fear anything before this apart from emotophobia. I am not scared of eating I am scared of using public toilets I always have been they are awful and when you get D no one wants to let others hear them etc! A phychaitrist isn't going to make my D go away! Lol. I do want to see a hynotherapist due to the brain gut connection I've looked it up and doctors believe its signals from our brain telling our bowel to go. I don't need a chat with someone I know I have an issue speaking to a phychaitrist won't help me. The D doesn't bother me its the not being able to hold it I couldn't care about how many times I go. Trust me if its a mental illness it would of caused D along time ago last year was the best year of my life. Then this year went down hill again.. First I had my gallbladder removed then D 24/7 it started when my gp gave me these fibre pills for my constipation.. He was just a doctor in my surgery not my gp my doctor said he shouldn't of given them to me... Ever since I took them I've had D since. I asked my gp he hasn't said he's caused this but he should never have given them to me? Weird huh! I don't think having my gallbladder out helped either. I had never heard of IBS till this year even though loads people have it. I thought I had the stomach flu but it never went away. I lost 28lbs in 3 weeks but its stopped now I needed to lose anyway so he wasn't concerned. I am not willing to give up everything I love because my bowel won't keep still. I don't think they will ever find a cute for IBS because I think its bull and they is no such thing as ibs I think we all have something though... Maybe celiac disease, food intolerances, h pylori, parasites etc etc.


I believe you may have the wrong idea of what a psychiatrist does. As far as I know, some actually do hypnotherapy. When I talk about it being "mental" or from "anxiety" I am actually talking about that mind-body connection you mentioned. The idea is when you become anxious about it (start thinking about it) your intestines contract and forces everything out. Psychiatrist don't just talk to you (maybe on the first visit). They'll try different techniques with you and eventually might prescribe you medicine. Mine tried some sort of meditation/hypnotherapy technique before we moved to anti-anxiety drugs. But I am pretty sure we are talking about the same thing here.

As for it happening randomly at some point in your life. I've definitely heard of this several times. Our brains are easily re-conditioned to respond to situations in different ways (thats why people change over time). We can easily fall into a viscous cycle that can result in IBS or any other obsessive thought. I have a friend who actually developed it about two years ago and he does think its all in his head. I obviously don't know anything about you for sure, but it wouldn't be fair to yourself to automatically rule out this possibility - its really not such an unusual thing. Similar to someone with stage fright.


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## windemere (Sep 25, 2011)

I gave up for awhile. Stopped working, got evicted from my apartment, moved in with my mom, ruined a 4 year relationship. Finally enough was enough. I started working again with a note from my doc about my condition, started taking Imodium regularly and daily going through 12-14 a day if I had to. I overcame my fear and embarrassment over going in public restrooms and refuse to let the ibs ruin my life. Today I almost pooped my pants at home because my d is so bad right now. Its upsetting but it could be worse. I don't know how but I know it could be. Reading the posts here help and ive been trying to find a local support group. I started taking Xanax which helps when I'm out. Anxiety about being in public sparked flare ups for me. Its a desperate situation but you shouldnt let it control you. You can get your life back.


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## onyx (Jan 13, 2006)

Trudyg said:


> ...For me, it's a vicious cycle....


Me too. I have a whole secondary set of psychological / emotional fallout effects from a decade of unmanagable symptoms. However I still think the primary cause was some physiological breakdown. I didn't used to be such a basket case - that only happened after years of uncontrollable D and how it screwed up my life.

So while I think trying to stop the cycle from spinning out of control is helpful to cope, I personally feel that unless I get help with the primary physical symptom which started all this, I won't really ever get a a semi-normal life back.


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## onyx (Jan 13, 2006)

FullyCured said:


> ... When I talk about it being "mental" or from "anxiety" I am actually talking about that mind-body connection ...


At first glance I tend to throw this kind of idea right out, since it seems kinda pseudo-sciency to me. However I'll admit you've got me revisiting this idea. It's true that I tend to fret alot. I have always been hyper-concerned with things that others seem to not give a second thought about. I do have a mild to moderate case of long term OCD and bouts of depression as well. I have read that IBS is often clustered with these psychological conditions as well.

I don't have true anxiety attacks, which is part of why I always thought this mind-body idea was irrelevant to me. However I'm wondering if I have a kind of ingrained, nearly constant state of being, where I'm so used to be anxious all the time that I don't really even notice it consciously, but perhaps internally my gut does feel it and causes all the peristalsis etc to break down.


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## overitnow (Nov 25, 2001)

onyx said:


> Hi Mark, yeah I think maybe the only help I'm looking for these days is now to try and structure my life going forward, given that I doubt I'll ever truly recover at this point. If anything I seem to just get worse with time. For many years I kept my former life "on hold" thinking I was just going through a phase, but after ten years I think I have to face facts. There are many many diseases which are incurable and for which there are few treatments that work for symptoms. It may be at least in my case that my IBS is unfixable in any measureable way. So the question then is, what do I do? I can barely leave my house. Can't maintain relationships very well, can't hold down a solid job, can't travel, can't this, can't that.
> 
> I've read some of your posts over the years and always wondered, do you think you really had IBS? Or maybe you had some other condition that mimicked it? Has the supplement you take ever worked for anyone else? I'm just curious, not trying to put you on the spot about it. I just wonder if some of the anecdotal reports I've read of people who say things like "I had IBS, then I tried this special honey, now I'm fine" or "I had IBS but now I don't eat pizza and everything's great" ... I wonder if these people really had IBS in the first place (whatever that is of course, given that the doctors don't even seem to really know).
> 
> Anyway thanks for the encouragement, I will try not to completely give up searching forever, maybe just for now as I'm exhausted and beyond heartbroken over it all at this point.


As far as I can tell, it was a general low level inflammation throughout the GI system from smoking. Whenever I mention that, the first response from posters is "I don't smoke;" but that is only one of likely hundreds of causes of inflammation. It was IBS until it wasnt; but that is alot like other manifestations, like from missing gall bladders, SIBO, and other stuff. The flavonoids have helped a few people both on the Board and in normal intercourse. Thai, who used to post a lot, wrote me to say how much the Melaleuca supplements had helped her and her husband and how was I going to get by in Mexico without them. (Well, I am still working through the supply I brought with me, so I guess I won't find out for another year or so...) There was a Lynne P who used them for years before discovering her wheat allergy. Patman, over on the IBD Board also uses or used them to great effect. Others have had success and then disappeared. Many have not. It's a crapshootlike everything, and itmtakes time to see if they work or not, so that makes itmeven more difficult. Anyway, the way it treated my GERD would indicate to me that there is likely a fair amount of inflammation in the upper digestive system as well as in the colon. Several years ago, I wrote the doctor who oversees the testing and he wrote back to say they had lots of reports of improvements to inflammation; but they were not officially testing for that, keeping their focus on Cardio disease.

My real point to this, though, is to try not to completely give up. I really was in the black pit before I found a treatment. That is no guarantee that everyone will be able to reverse their symptoms this well, but as with everything else around here, you can't really prejudge anything.

Again, my best to you.

Mark


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## onyx (Jan 13, 2006)

windemere said:


> I gave up for awhile. Stopped working, got evicted from my apartment, moved in with my mom, ruined a 4 year relationship. Finally enough was enough. I started working again with a note from my doc about my condition, started taking Imodium regularly and daily going through 12-14 a day if I had to. I overcame my fear and embarrassment over going in public restrooms and refuse to let the ibs ruin my life. Today I almost pooped my pants at home because my d is so bad right now. Its upsetting but it could be worse. I don't know how but I know it could be. Reading the posts here help and ive been trying to find a local support group. I started taking Xanax which helps when I'm out. Anxiety about being in public sparked flare ups for me. Its a desperate situation but you shouldnt let it control you. You can get your life back.


Thanks for the encouragement. Your situation sounds alot like mine. My family often tells me "don't let it control your life". It's frustrating since it makes me feel like they think I've just been passively accepting everything. However your post makes me think, maybe what I need to do is redefine what my life is. It's not as it used to be, and will never be anything like that again. If I can redefine things a bit more realistically like you seem to have, maybe I can cope with it better, instead of hitting this same brick wall every day.


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## onyx (Jan 13, 2006)

overitnow said:


> As far as I can tell, it was a general low level inflammation throughout the GI system from smoking. Whenever I mention that, the first response from posters is "I don't smoke;" but that is only one of likely hundreds of causes of inflammation. It was IBS until it wasnt; but that is alot like other manifestations, like from missing gall bladders, SIBO, and other stuff. The flavonoids have helped a few people both on the Board and in normal intercourse. Thai, who used to post a lot, wrote me to say how much the Melaleuca supplements had helped her and her husband and how was I going to get by in Mexico without them. (Well, I am still working through the supply I brought with me, so I guess I won't find out for another year or so...) There was a Lynne P who used them for years before discovering her wheat allergy. Patman, over on the IBD Board also uses or used them to great effect. Others have had success and then disappeared. Many have not. It's a crapshootlike everything, and itmtakes time to see if they work or not, so that makes itmeven more difficult. Anyway, the way it treated my GERD would indicate to me that there is likely a fair amount of inflammation in the upper digestive system as well as in the colon. Several years ago, I wrote the doctor who oversees the testing and he wrote back to say they had lots of reports of improvements to inflammation; but they were not officially testing for that, keeping their focus on Cardio disease.
> 
> My real point to this, though, is to try not to completely give up. I really was in the black pit before I found a treatment. That is no guarantee that everyone will be able to reverse their symptoms this well, but as with everything else around here, you can't really prejudge anything.
> 
> ...


Thanks Mark for the detailed and interesting reply. I also don't smoke but I do suffer from long-term GERD. I tend to think I have some kind of broken nervous system problem that messes up all my timing (so my upper GI valves don't work right and my lower GI peristalsis doesn't either). However the idea of inflammation is still intriguing. My naturopath gave me an anti-inflammation diet book so I guess he thought it might help too (one of the few diets I never actually tried). Anyway glad you and others have found something that helps. I guess I hold out some hope that it's possible for me too, but after a decade I also have to figure out how to just live with it in the meantime, since for me (and probably some others) it may never reallly subside.


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## Jennifer7 (Nov 13, 2000)

Don't give up! I haven't read the whole thread here (sorry!), but I was next-to-homebound for 15 years before I found something that really helped. Have you tried Ondansetron? I take 3 mg/day & it has helped me immensely!!! In addition to that, I take Lexapro. The Ondansetron works on the Serotonin in the gut, the Lexapro, in the head. I also have started drinking LIMU within the last couple of months and feel that I may be able to reduce the Ondansetron to 2 mg/day. I'm ready to experiment, because I'm doing very well. I just have to take Imodium once or twice per month.


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## windemere (Sep 25, 2011)

Exactly...when I say don't let it run your life I mean allow yourself to accept what's going on and alter your lifestyle to make it easier for you. Getting my life back on track took awhile and I'm still learning things. Its hard and frustrating but I made it work for me. I think you can do the same.


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## tinh (Nov 13, 2012)

I feel for you as I have been in a similar situation. I have a 16 month old daughter and my IBS got to the point of incontience a few weeks ago.

For the medicalappointments I wore a nappy as I couldn't guarantee that I could travel (over an hour) to hospital. I got to the where I was house-bound, and even in the house it was a long way to the toilet.

I gave up bread and started on ampitiptiline (spelling!) and it had eased. But it's hard having the confidence to go out as I have not done it for so long and my life seems controlled by my bowel. I'm a single parent so there is no one to help (I have an older child, 12, as well). I have arranged for taxis for him to get to his activities and found a couple of people that I can ring in emergencies to help with my daughter.

All I want is to be able to have a normal life. I have looked at diet and thought it was wheat, hense giving up the bread. I tried wheat free bread with scrambled eggs for tea last night and hey presto 3 am this morning stuck in the bathroom! So is it eggs? Or is there something else that is a trigger? Or is my IBS just "one of those things" - quoting a doctor here.

I hope you find some relief soon as being house-bound and having a limited life is not easy to live with.


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## shannonfbc (Jan 7, 2013)

I thought about it and I haven't even had it that long.... your post and the reponses brought tears to my eyes.... thank god I am not crazy or alone....


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## M11 (Jan 9, 2013)

Hi,

this is my first post here, I am going to introduce myself in another post. If I can share my experience for you :

- stress has a great impact on IBS, try to take it easy, that is more easy to say than to do, I'll agree on that, but in my case I talked about the condition to my family, friends, colleagues, it greatly helped to know that people around me know about my condition, that way, I am still anxious about an accident (who would not be?) but not about being laughed at or called shitty pants later, because I explained carefully to people. that's a lot of stress less actually.

- Other thing is I got lucky is that my job is not too strict on the working hours, I can then let the morning hell go in the bowl then go confidently to work (Though, I still need to do pit stops half-way, it is manageable), maybe if you can get this too, that could help.

- I tried probiotics, it looked like working but I am not really sure as I stopped them after being in a bad period for a week while still taking them (underdosed? not efficient? really hard crisis?)

- Doing sports definitely helps, if I go running in the week-end, I'll be OK at least till the wednesday (sometimes, the "back to IBS" is tough, but that is maybe because I start to enjoy normal life already)

As to give up, I do not think it is an idea to follow, as hard as it is, there is always a way out, some of the posts here bring hope when you read them.

Good luck for the future.


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## quarky (Jun 15, 2011)

I'm sure my IBS isn't as bad as a lot of people's on here (it's only really unmanageable during my period, otherwise loperamide almost always helps) but the experiences I've had of being trapped in pain on public transport or out in the countryside, needing to go to the toilet but not being able to get to one, has affected me to the extent that I never let myself get more than 10 minutes away from the nearest toilet. I start getting anxious whenever I travel to an unfamiliar environment, and only leave the town where I live about once a year to visit my parents.

I do manage to support myself (I work from home as a freelance writer over the Internet) and have a relatively full social life within the boundaries that IBS has set. I live in a small city that is fortunately quite well-equipped with public toilets and am comfortable walking or cycling to and from various places in the city. Owning a bike really helps because I know that if I have an IBS attack I can quickly divert to the nearest public toilet, and most places I want to go are within a 10-15 minute ride of home. I attend dance classes at least two nights a week (both venues are within a 10-minute bike ride of my front door) and have a local circle of friends associated with that, am a member of a local writing group, and there is also a yoga studio across the road that I go to often. I would like to visit other cities to attend various dancing events and to visit people but the stress of the journey means it's not generally worth it. Sometimes I get depressed that my life is restricted compared to other people's, but mostly I'm fairly happy.

Being confined to a small area doesn't necessarily mean you have to give up on life entirely. Even if you're entirely homebound, the Internet gives ways to work, learn and connect with others. I'm currently taking a bunch of free online courses to learn about stuff I'm interested in, and have some long-standing online friendships with people in other countries.


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## Brittany04132013 (Jun 5, 2015)

I have ibs-d and found that a low fodmap diet and cholestryamine twice per day has helped me. Also peppermint tea helps stomach pain and metamucil bulks up your stool. Don't lose hope. Get out of the house and be brave. You can do it. I also do not drink coffee and alcohol is an irritant to the gut so avoid that too! Prayers for you all!


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