I have seen a number of Gastroenterologists about an issue that has taken a large tole on my life and the keep on saying that it is in my head! That I am imagining people reacting to me. I will present a letter that I wrote detailing what I am going through, and I would like to know from a professional after reading this, why would a doctor think that I am fine.
Here it is:
I have a problem that no one seems to be able to put their finger on what it is. The problem I have is basically a leaky rectum. I know its leaking because it feels like something is leaking and I usually feel wet or cold around my cheeks. Another big indicator that it is leakage and not gas is peoples reactions. Lets say I am in a closed room, and I have an unexpected leakage, there seems to be an instantaneous reaction from people in the room ( as funny as that may sound, its actually very embarrassing ). It makes sense that it would smell because a liquid exposed into the air would smell up the room, it has an odor that permeates the room - like taking something out of the microwave for example - as opposed to a passing of gas which travels and only the people next to me would smell it. So there is a definite link between my leakage and peoples reactions, and that is how I know that I have a problem.
My family says that its all in my head, that I am looking for peoples reactions. But its not hard to read people that you smell, believe me they make it obvious. Even when my mind is not focused on my body leakage people react negatively, and then right after I realize that I just had a leakage. So I am 100% sure that it is not in my head, but yet this is what people are telling me. A) I feel the leakage, and the wetness B) there is a cause and reaction from my leakage and peoples negative reactions. So the argument that it is in my head is out the window. Lets say I would talk to someone at the market, I would soon see that they would make a face like they just smelt something. People usually find ways to cover their nose when talking to me.
This leakage has effected my social life 100%. I am too afraid to go out and deal with people smelling me. I stopped going to the gym, yoga, out on saturday nights, I stayed home for Halloween. I have been home since October 21st and only go out for the necessities which then I have no choice but to deal with humiliation. From what I have read on the internet, what I am going through is exactly what people who experience Fecal Incontinence go through; loneliness, embarrassment, humiliation. Which is a good example that backs up what I already thought that I have - Fecal Incontinence - or some from of it.
I say this because if I had an intolerance, or a disorder along my digestive tract, I would have fixed it by one of the methods in which I was doing to cure my problem. I have targeted my stomach and intestines in a number of ways, all or which my leakage stayed constant through out these procedures:
Digestive Enzymes - protein, complex sugars, fructose
Activated Charcoal ( still had leakage, even wile on activated charcoal which is supposed to absorb gas )
Large Intestine Cleanse - hydrocolon cleanse
Small Intestine Cleanse
Fasted for a couple of days
and everything in the book
After doing all of this I knew that something was wrong with the mechanics of my body, like a weak sphincter for example, and not my nutrition, or intestines. Which I thought since the beginning because what else would explain gas coming out unprecedented, and leakage.
I have normal bowel movement, 3 times a day. I don’t have stomach cramps, diarrhea, I have zero flatulence when I take digestive enzymes. There is absolutely nothing unusual aside from my leakage. Im sure if I had an intolerance there would be constant flatulence, or stomach cramps, or irregular bowel movement. To me this lessens the idea that it is an intolerance. I even got an intolerance blood test, and everything came back ok.
I can link the cause of this to what I was doing before the leakage happened to two things: first, I switched to a vegetarian diet, on and off for 4 months. I was eating different foods than what I my body was used to: beans, vegetables, soy. This could be a possible cause, if it wasn’t for the fact that I stopped eating vegetarian for 6 straight weeks, took digestive enzymes and still have the leakage.
A second thing I can link the cause of this to is a laxative I was taking from a colon cleansing kit I did a month prior. I was taking it in hopes of reliving a lot of embarrassing gas I was having -- hence the vegetarian diet. I remember the how the leakage started. I was going to New York for the weekend and I wanted to be gas free for the trip, so I took one pill on thursday, left to NY on Friday. I stuck with the vegetarian diet, still had embarrassing gas so on Saturday I took half a pill. Sunday I was watching someone speak in a concert hall, and still I was experiencing gas. So wanting to fix it I took two pills, I can tell you that I was on the toilet, but the gas stayed. It was on the bus ride back home that evening where the leakage started. It was probably one of the most embarrassing bus rides I had in my entire life! So in a matter of 4 days I took 4 laxative pills.
What the laxative did was it irritated my large intestine to where feces would be let out immediately. I would hardly even be able to hold it in. It basically opened my valves and flushed everything out. Even when I didn’t have to poo my valves felt open as if they wanted to let out something that wasn’t there. I think this has something to do with the fact that my body can’t hold in liquid and lets it out on a regular basis.
So this is what I am going through. As you can see it has been an embarrassing, but learning process. I have faith that you and I can find the exact problem and provide a way to fix it and get me back to normal.
End of the letter.
Like I said, I would like to know what differentiates my problem with someone with fecal incontinence and that has a credible case.
I think that I have a loose sphincter muscle and it is causing liquid, and gas to come out.
I do not have stains on my underwear, so I know its not feces, but it could be mucus, or some kind of transparent liquid. Anything coming out of the rectum, being exposed into the air would have a smell.
One of the Gastroenterologists suggested that I am paranoid, that people are not smelling me, and I am misjudging the whole thing. But to argue that people are smelling you is hard to prove without looking paranoid.
I am writing down what the occurrences that happen that make me think people smell me, and from that we will make a judgment.
In the mean time I am doing Kegel Exercises, and watching my diet to deal with it.
I hope you can get some help because it sounds as if you have put your life on hold.
Is it possible that you have a problem with your spinal nerves? I've got a condition a bit like MS and I get areas on my skin that feel cold and wet, and yes, this also happens in the genital and anal area. I feel wet, but I'm not. I was also told that I may lose control over my anal sphincter, luckily that hasn't happened (touch wood). Perhaps you are passing gas without feeling it because of a nerve problem. This would account for the smell. If you have this condition it would explain the wet feeling and the smell.
Sometimes people with neurological conditions also sense smells that aren't there. Have you ever asked a friend or family member to tell you honestly if they can smell anything?
You NEED to have this assessed, whether it's psychological or physical because it's interfering with your life. If your doctor dismisses your concerns, tell them how much it's affecting your life and insist on some investigations.
I have had almost the same situation for 11 years now (since I was 19), but only difference is that I can usually feel the "bubble" after it comes out. It started the same way also. Stomach went completely loose on weekend and on next Monday I noticed I was leaking gas. Otherwise no problems. No excess flatulence, or stomach cramps, or irregular bowel movement.
I still don't know what causes the exact problem. Perhaps the supporting structures in anal canal loosened, inner sphincter is too loose or some nerve that is supposed to detect gas is damaged.
The good news are that most likely you aren't paranoid. If you stink, it's very easy to notice it from other people reactions. Most only speak behind your back, but often close enough that you will hear them. I propably could have collected already 1000 written testimonies that I am not paranoid :P
Some of the Gastroenterologists will say that your are paranoid, others has no idea that this kind of problem exists, so I would recommend finding specialist for fecal incontinence (leaking gas is the mildest form). They will at least know what you are talking about and they can do some tests and even try some treatments.
I already lost my hope for normal life long time ago, but life goes on.
Unfortunately, with this type of problem, it is very common for family and doctors to label you as being paranoid or imagining this stuff. Another common response is 'But everybody passes gas!' which doesn't help when you are depressed and exasperated, despite numerous attempts to fix the problem.
I have been to a couple of physical therapists and one of the questions on the form I had to fill out mentioned 'gas incontinence' as one of the conditions to check off. So it does exist but unfortunately doing Kegels as is often suggested doesn't fix the problem. In fact, from what I've read, when you attempt to hold in gas, which we are llikely to do if we have this type of problem, you are actually doing a Kegel! And from what I've read,
doctors don't consider odor issues to be a 'problem' or at least not one that they feel is their job to treat/fix.
I currently must have something going on in my abdomen- it's been doing it for a few months now. I always have a very warm feeling escaping my rectum- especially when standing or while at work. It does feel as though my anus is not fully closed but I've always been told that it is in good condition. Occasionally I will feel a small amount escape and when that happens there is a very negative reaction from people several yards away.
I personally cannot smell anything but I do feel a constant burning. My massage therapist thought that my abdomen felt inflamed and suggested some type of colon cleanse. She mentioned Bentonite which I am trying but of course that won't fix the leaking- at best it would just mean less leaking.
I haven't been to a gastro for awhile- I dislike scope tests due to adhesions but would be OK with a barium if that is allowed. I'd also ask about a SIBO test.
My life has pretty much been on hold for nearly 30 years due to never-ending GI issues. Unfortunately, once cancer is ruled out I was always thrown under the IBS bus which means no further help from the medical community. They always spout the same advice- fiber, stool softeners, etc. which most of us have already tried. And to me, it makes sense that if I have had GI issues for so long that there would be eventual weaking/dysfunction of the anal sphincter.
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