doctor dilemma

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leffykit

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I've not been round here as much as I used to be and TBH its because I'm a little depressed and a little frustrated, and reading through other topics here hasn't really helped how I feel.

For those who recall my post about my problems with IBS I did see the doctor again, having already been once last year to try to find a cause and was referred back and forth between hospitals to see specialists, only for them to draw a blank, give me an all clear on tests and fob me off with irritable bowels and suggest I modify my diet.

About six months later came my post on here, which coincidentally was around the same time as kaworuchan's thread on similar problems.

Suffice to say I took the general advice of everyone here and got checked out again, ran through their tests, tried various advised alterations to my diet, dropping starchy foods, cutting caffeine, gluten, dairy products etc one after another (though not at the same time) to no avail.

Failing all these they sent me for tests again, cue endoscopies, biopsies and blood tests, weeks of waiting for results and then BAM intestines heathy, negative for diabetes etc, conclusion: acute IBS

Meanwhile I'm passing fecal matter randomly, with little or no warning, and pondering if I'm the only one getting fed up with the medical professionals using IBS as a catch-all for anything gut related that they can see is wrong but cant fit in one of their tidy little boxes!

I know this has turned in to a bit of a rant but I guess my real reason for posting is for the communities advice again;
what should I do next?

My local doctor's surgery just been taken over by a new female doctor, but is it worth going there again if the most likely outcome is being sent through the hoops and hurdles of testing at a hospital referral, just for them to conclude IBS again, or should I just invest in extra padding and go with the flow so to speak?
 
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I get the same frustration with chronic fatigue. That's the general cop-out answer when the doctors can't figure out what wrong. I get enough sleep, I exercise, I don't have diabetics, nothing wrong with my bloodwork. But I am friggin' exhausted all the time for no apparent reason. I MAKE myself exercise so I won't get fat. But I'm really tired of being tired.

Medical science isn't nearly as advanced as it pretends to be.
 

Peachy

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It sounds like you've been through a fair bit of tests already, and the probability that another doctor will find out what's exactly is wrong with you is rather low. The body is a complicated thing, and while modern medicine can do many amazing things, today's doctors still can't explain every symptom or have a way to fix every problem. As sad as it sounds, you may just have to accept that - for the time being - the doctors just don't know what's wrong with you and thus stick you into the IBS-box (which is just a convenient label for "We don't know, man, we honestly don't know!").

My suggestion is to give yourself a rest from all the probing, tests and doctor's visits. Maybe all the stress coming from the testing contributes to your IBS, and a bit of relaxation is just what you and your digestive system needs. Do stick with trying different diet options just to rule out it's not diet-related. Other than that, stock up on padding or other protection and give yourself some rest, and see if it gets better by itself, or if it gets worse, or if the symptoms remain unchanged.
I would, however, advice to return to the doctors at a later point - preferably to some other specialists than the ones you've already been to - to see if medicine has meanwhile found an answer to your problem.

:hug: Peachy
 

PuerAeternus

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It makes two years now that I have been diagnosed with Crohn's disease, so I know exactly what you are going through. :hug:

My advise would be the same than Peachy's, take a little break and see how things are doing. At least give a try.

Also, since it is really bad for the bowel, I would try to slow down on fuzzy drinks and sugar, if you haven't already done it.

By the way, have you been tested for food allergies?

High stress doesn't help to get better, above all with these kinds of stress related diseases. So the stress induced by the tests/follow ups/hospital trips might not be worth it.

One last thing, I know IBS might sound like a non-diagnosis but try to consider yourself lucky not to actually have an IBD or anything else worse than IBS. Of course this doesn't take away any of the inconvenient of being sick but put it into perspective, things can always be worse.

Feel free to private message me if you want.

Hoping you get well soon :)
 

dprdinky

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At least you've been persistant at trying to figure out what is going on with you. I applaud you there. I do agree with what has been said. Give yourself a break. It may mean just wearing some added padding and find a way of cutting down on the smell, if at all possible. In the USA there's a product called "Nullo" that works well at doing that, although it causes the bowels to look all green.

Anyway, continue testing out diets and see if that helps. You need to give yourself a break.
 

bdb2004

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Ok a few things, first off it sounds like they pretty much gave you the full work up for possible organic causes, while it is possible they missed something it seems unlikely, that said it is always possible, so it never hurts to get a fresh set of eyes to look over everything. So while it is definitely frustrating to be stuck with a diagnosis that doesn’t seem to really say a whole lot, as PuerAterenus said, it is a lot better then some of the alternatives.

So assuming organic causes were correctly ruled out, that basically leaves you with what looks like IBS. One thing you didn't mention is if the doctor put you on any medication, there are a number of drugs which have been shown in randomized trials to be more effective then placebo's in controlling IBS symptoms both long term and during periods of severe symptoms so if they do not have you on any medications so far and your symptoms are impeding on your lifestyle its definitely worth setting up an appointment to discuss those options. On a side note, two drugs which have actually been shown to be useful in treating IBS are Tricyclic antidepressants and SSRI's, while some of this might have to do with relieving depression (which by itself can be a serious cause of IBS) they also have direct effects on the GI system which both relieves pain and slows transit time. Again, not sure if either of those would be useful in your specific case from the information here, but something to consider asking your doctor about.

Finally, you mentioned that you were feeling depressed, in some cases working on addressing that can help improve the IBS symptoms.
 

leffykit

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they've already had me on buscopan, but it didnt do a thing, im not so much depressed as fed up with being given the same catch all answer. I guess the main reason would be because their original given reason for my ibs being so bad was becuase of stress to do with work (being close to being fired) , there is none now as I'm not working. As I said before I've been through testing a coouple times now and while things seem to be getting worse for me and coping with it, the outcome of diagnoses remains the same.

Im getting tired of having to throw away underwear and replace it and tired of excuses to my parents whom im still living with. I havent told them yet as I dont want them worrying too much.
they are aware that I have ibs but they dont know anything about the roblems im having more recently with continence back there.

Also thanks for the support to everyone who's replied so far :)
 

new2inc

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How is your relationship with your folks? Can you have a chat with them about this? They can be very helpful in getting through the BHS paperwork that will help you get nappies for a far better price. Your doc might even be helpful with that.

I understand your frustration with the doctors- they have great answers for you as long as you fit the 90% case. As soon as you fall outside the norm, their solutions just don't work. So I stopped looking at more surgeries, more meds with weird collections of side effects, and I am content to wear nappies.

Let us know how you get on.
 

leffykit

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How is your relationship with your folks? Can you have a chat with them about this? They can be very helpful in getting through the NHS paperwork that will help you get nappies for a far better price. Your doc might even be helpful with that....

.....Let us know how you get on.

Unfortunately that isn't an option, my parents know about my fetishistic liking for nappies (I prefer the term diapers :p )
they discovered it back in my TB days and again when I was about 22, the first thing they will do is jump to the fetish route and probably reissue their threat of psychological help if I don't "sort myself out"

In an ideal world I'd go to them and they'd be fine with it as a health decision, but with current circumstances and my current financial dependence on them I cant risk them viewing my ibs and continence issues as a "sick excuse to feed my fetish" which they think I'm over
 

new2inc

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Sorry to hear that. Perhaps your doctor can be of help with the NHS papers. Somebody in his/her office will be knowledgable in that process.
 

Gingy

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I say stop eating all together!
After all, no food=no poop.

Just joking of course.
I have no real solutions or suggestions for your tragic problem, but I hope you find one soon.
 

PuerAeternus

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I say stop eating all together!
After all, no food=no poop.

Just joking of course.
I have no real solutions or suggestions for your tragic problem, but I hope you find one soon.

You're kidding but actually, some kind of anorexia can show up.
It's an easy mechanism to understand, as you said so, no food = no poop, and I'll add no pain. So, when you feel something is hurting you, I guess it's a natural way of defense to try to avoid what is making you sick.

As far as I am concerned, when I was critically ill, I wouldn't eat anything if I had to go outside, in fear of pain and uncontrollable urges. Even still now I have to think twice before eating something and leaving home.
 

babyjhonny

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Just keep in mind doctors, regardless of Gender, Race, Culture, Upbringing, Heratege or Training have seen it all before. It wont be the first time this new female doctor has seen a bowel incontinent guy before. If i were you i would go, you never know if you have an accident she may offer to help clean you up. All doctors have done that before, and changed soild adult diapers. During training. When they have to work for 1 year as a General Nurse
 

AnalogRTO

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Good luck finding a better doctor. I fired my first urologist when I went in with severe testicular pain that was making my cluster headaches seem mild--he dismissed the pain as "insignificant" and wanted to concentrate on my lifelong incontinence issues that I have come to terms with and I am dealing with easily instead.

I fired the second urologist when I came to the end of treatment options with him. I was given one last option: implant a neuro-stimulator to try and control the excruciating pain. If that didn't work, what option was there? He had none. I asked to find another opinion at that point, and fired him.

I did the same thing with my cluster headaches. My first neurologist had no clue on how to treat me, I asked for another opinion, went on to a doctor recommended by family physician. I fired that guy when he refused to give me anything for the pain stronger than ibuprofen solely on the grounds that I would become a drug addict. The next doctor was fired when her office staff controlled things to where I couldn't get prescriptions as needed if they were not happy.

Next doctor had me in hospital for a few days, and I fired when upon leaving she let me know she did not trust me to follow her orders on what to take for medications. Went to a pain doc who tried telling me that my skydiving caused my headaches, even though my headaches started before I started skydiving. "Just a coincidence." was how he explained away that minor reversal of timing. Bye-bye.

Wound up at the current doctor I am at now, have been with her for nine years out of eleven years of treatment. Two years of that timeframe has also seen two other neurologists come in as consulting doctors on my case.

Ultimately, the doctor I have now and I trust each other, and respect each other. Honestly, I feel as if she has brought me back from the brink of suicide. No other doctor would truly be capable of doing what she has done. Finding the right doctor is truly worth the fight and wait.

I wish you the best of luck. Godspeed.
 
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you can fire a doctor? Like in Donald Trump "You are fired!" ....thats something new :p
 

AnalogRTO

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you can fire a doctor? Like in Donald Trump "You are fired!" ....thats something new :p

Basically, you tell them that you are no longer going to be one of their patients. If you have been with a given doctor for a significant timeframe, then it helps to get this taken care of with their office staff and the office staff at the new doctor because you will want to get all of your charts and other appropriate paperwork transferred over.

Doctors who are appropriately 'fired' (and ethical) usually do not charge anything for transferring charts and information over to another new doctor in a case like this.
 

nplasticpants

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I have Crohns

I have Crohns. With Crohns, I get diarrhea and pain. Chronic diarrhea = diapers. Diapers are the only alternative when leaving home.

My general practioner and gastro-interologist are non-judgemental about diapers. I tiolet 6 or more times a day. Sometimes you just don't make it on time.

A year or two after I was diagnosed with Crohns, I became bi-polar. Sometimes I go three or four days with little or no sleep. When I crash, I will sleep very soundly 12 plus hours. Conseuently, I have also become a bedwetter.
 
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AnalogRTO

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I have a sister-in-law who has been fighting Crohn's for quite a while as well. I do not envy you in the least, I would not want to be in your position. My sister-in-law went in and had a portion of her large intestine removed (think it was over 12") to try and deal with her Crohn's.

I have only had once or twice where I have had bowel control issues and it is not something I like. I feel for those of you with Crohn's.
 

Dude84

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This all seems dreadfully familiar unfortunately; I have some kind of neurological issue going on, no-one in the medical profession has quite been able to decide what it is yet. They have had lots of "fun" trying to determine it, involving several stays in hospital, numerous blood tests, consultant appointments, and some pretty unpleasant tests involving sticking needles into various places. Trust me, sticking something into the muscles surrounding your hands and sending electrical current through them is not something to be desired!

Although I no longer live at home (haven't for some years now) I can understand your concerns regarding your parents and padding; mine discovered through my own carelessness my interest in this type of thing back when I was fifteen, and things were never quite the same again. Despite the fact that we do get along now, and my mother has been to my flat and seen numerous Abena Abriform X-Plus boxes (with their distinctive big bold blue 'M' and the three stripes) she hasn't said anything, and it isn't discussed - I do still try and avoid wearing around her though.

Having said that, the continence side of things is not one that i've pursued with my GP so far; i'm just too embarrassed, and I guess tired of seemingly endless medical procedures, so I just buy them at my own expense.

Sorry, this is turning into a rant in *your* thread. The only advice I can give, as I haven't quite found a solution to the endless medical soap opera myself yet is to be persistent and specific; doctors like specific answers and problems, and seem to respond better to them. Additionally, you always have the right to a second opinion, even at consultant level (not sure if you have seen different consultants, noted you've seen different GPs).

Still, if you ever want to just rant to someone who, trust me, does understand, then send me a PM here or on MSN/Yahoo.

-MF
 
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