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View Full Version : When IBS isn't IBS (long)


mickeymedic
12-07-2006, 08:38 PM
This is a story of frustration that actually has a happy ending...
For years now I have been treated for Irritable Bowel Syndrom. I actually suffered from lower GI symptoms (undiagnosed) for as long as I can remember. When I was 23, a PA finally payed attention when I started losing weight and was unable to make it through a meal without having incapacitating diahrrea. At the time, my life was pretty stressful as I was working full time in one city and going to school full time in another cit an hour away. But my symptoms could no longer be explained mearly by stress, so the PA diagnosed IBS and prescribed medicine. The meds worked for a while, but I had to keep increasing the dose and finally the meds didn't work any more. The symptoms mysteriously disappeared after a course of antibiotics for a bacterial infection. Then they reappeared a couple months later, but were mild. However, after a while, I was unable to complete meals and losing weight again. I had since switched doctors. The new doctor prescibed a different IBS med. It worked for a while - maybe 6 months, but then my symptoms returned. At this point I was 29. I had been treated for IBS for 6 years with no diagnostic testing to rule out anything else.

I tried to ignore the symptoms. I had done lots of research online to find some relief. I tried just about every diet imaginable for IBS thinking that perhaps a specific food was triggering my symptoms. But the only thing that worked even a little was eating small meals, eating VERY slowly and stopping prior to feeling full. I also wouldn't eat if I was going to be driving for any length of time, especially if I did not know where the bathrooms were along the way. The thing that bothered me most about the information that I could find regarding IBS is that, by definition, IBS means that there are physical symptoms in the absence of physiological abnormalities. So, unfortunately most people (including some of the doctors) interpret that to mean that IBS is a psychological thing that is affected by stress and emotions. So, I really wasn't that anxious to return to the doctor when my symptoms started getting worse.

Then my symptoms changed. I started vomitting this really nasty (OK all vomit is nasty, but this was particularly bad) greyish substance. It didn't look or smell like anything I had ever seen before. (I work in emergency medicine, so I've seen every type of vomit imaginable.) And the nausea that accompanied this was so bad that I couldn't even move my head without dry-heaving. After the 3rd episode I was scared. So I went to the doctor and was immediately referred to a Gastroenterologist. After 6 years, I was finally referred to a specialist and was finally getting some diagnositc tests!

After undergoing every type of imaging imaginable, they discovered that my esophogus does not connect properly to my stomach, half of my stomach was not working properly and part of my intestine didn't work properly. I was put on a couple of medications, and told to eat small meals through out the day. My symptoms improved for a while, but I was still having diahrrea. So the PA at the GI specialist's office told me to eat a high fiber diet. I didn't do a great job sticking to it, and my symptoms started becoming more frequent. I decided that I'd better get with the diet before my 6 month follow-up. So, with about 12 weeks to get myself together so that I wouldn't get scolded at the doctor's office, I started doing exactly what I'd been told to do. I was eating high fiber cereal every morning, eating fresh fruits and veggies, I had switched to whole grain bread and pasta. And the abdominal pain and nausea continued to increase. It got so bad that I was routinely having trouble getting up in the morning because I would wake up and develop abdominal pain and nausea that prevented me from getting out of bed for anywhere from 1/2 hour to an hour.

Then the pain started waking me up - at first just in the morning, then throughout the night. I was having a hard time at work because if I ate, I'd get really nauseated and have bad abdominal pain, and if I didn't eat I'd feel lousy from not eating. I ended up calling my specialist to move up my appointment date after 3 nights of lying awake all night in pain. At my appointment, I saw a new PA. I told her about the pain, nausea and that I'd lost 10 pounds in 10 weeks because I couln't eat.

I was diagnosed with Gastroparesis and put on an additional medication. It turns out that the high fiber diet that I'd been on to prevent the diahrrea is the worst thing in the world for Gastroparesis. So, now I'm on a high fat low fiber diet (eating all the food that was forbidden before.) The new med seems to be working pretty well. I have actually had 3 days in a row with no pain or nausea. After 10 weeks of constant pain and nausea, this is HUGE! I had a small set-back when I missed a dose of medicine, but nothing like before.

The moral of my long story, it turned out that the problem actually was physiological. The doctors didn't know that until they actually looked. So, my diagnosis of IBS was truely a mis-diagnosis. If you don't feel good and/or your treatments are not working, get a second opinion. Just because the doctor can't find a physiological problem the first time (or never looks to begin with) does not mean that one does not exist.

mom+3girls
12-08-2006, 09:10 AM
I have suffered from IBS for years or so I thought.
I was diagnosed in 1999. Just recently I had a gallbladder attack, and now I think that I was having gallbladder attacks all along, the doctor that took out my gallbladder told my mother that my gallbladder was very inflammed and that it had probably been that way for a long time.
I have researched on the internet and a lot of the systems that I have been having all along point to the gallbladder but not one doctor ever suggested that it might be that. I just had the gallbladder surgery 2 days ago. We shall see if the symtoms stop. I hope so.

I hate to say it but I think sometimes doctors are so busy that they don't really hear the patient when they are saying things and it causes them to misdiagnose people.

Virgo10
12-08-2006, 09:29 AM
Your story should be a wake up call for everyone. Doctors are not infallible. If a treatment doesn't work make as much noise about it as possible.

After the first gallbladder attack I had, the doctor I'm seeing treated me for IBS. The meds worked OK... until I had the next attack. :rolleyes: It was me saying I really think this is my gallbladder that convinced him to order an ultrasound.

While self-diagnosis doesn't always work, neither does "it's all in your head". I would run, not walk, away from any doctor who told me that.

Best of luck with your new treatments. Here's hoping the medical people finally have gotten it right!

Goofyluver
12-08-2006, 11:48 AM
I know personally how frustrating it is to be misdiagnosed. I'm glad you found your answer.

jann1033
12-21-2006, 02:46 PM
funny i just posted on another thread how wrong dx is worse than no dx then come here.. :teeth: glad they found out your problem and are working at helping you..

I've had cfs ( one think that often accompanies it is ibs) for yrs and know the "it's all in you head" routine...depending on how snotty they are depends on how much i wish they would get it... evil laugh. i do find it funny how suddenly the cdc "found a biological foundation for cfs" and totally changed their tune but ignored the 2000 some published papers that had said the same thing for 20 yrs and never yet said they were sorry to all the patients they brushed off and insulted for yrs. after totally failing a neuro exam once ( including babinski sign which you can not fake) i was told to "go home" nothing was wrong with me except i"wanted to be sick"...makes you wonder why some went into medicine in the first place.. ok rant over

so yeah if you feel like garbage and they say you are fine or what they do isn't helping and they refuse to change their thinking it's all in their head and you need to get another opinion

mickeymedic
12-24-2006, 06:34 PM
so yeah if you feel like garbage and they say you are fine or what they do isn't helping and they refuse to change their thinking it's all in their head and you need to get another opinion

Amen to that!

kathleena
01-10-2007, 08:23 PM
A little late coming into this thread.

My friend was dx with suspected IBS. Turned out she had celiac disease. She had symptoms really similar to what you describe here.

Mackey Mouse
01-11-2007, 09:58 AM
Mickeymedic..... I am sorry I missed this one, but just read your post..

Wow... good for you for persevering through all that you have gone through..

I am glad they have finally diagnosed your correctly, just wondering here can this be corrected by surgery?? the connection problems?

Anyway, glad you are feeling better and hope that you continue to do well..

Come here anytime if you need to vent or just to update us on how you are doing..

:)

mickeymedic
01-16-2007, 09:13 PM
Kathleena, yes, we effectively ruled out all dietary causes. That was lots of fun. But I have heard about quite a few people who get misdiagnosed with IBS when it is really celiac.

As far as an update on how I'm feeling...for those of you who care, thank you so much for the support. I love the disboards! Anyway, the dyspepsia and gastroparesis sypmtoms are pretty much under control for now. The anti-nausea med is doing an OK job. I had to play with the dosing at first - because it makes me really tired. I ended up having to cut a few work days really short because I could not keep my eyes open. But I now take a large dose at night and only a very small dose during the day if I need it.

When it's not one thing, though it's another. I was in the hospital for 2 days last week with a 5 mm kidney stone. :scared1: I've never had kidney stones before - but I'm always up for trying new things.:lmao: If you don't keep a sense of humor about these things, they will drive you insane (and for me this would be a very short trip.)

That's all for now. Hugs, prayers and pixie dust...

Mackey Mouse
01-17-2007, 05:06 AM
Yikes.. a kidney stone. Listen, you need to stop trying these new things;) . Take care of yourself and let us know how you are doing. I am glad at least finally they have the diagnosis correct and you are managing the meds well..

LovableGluttons
02-02-2007, 11:52 PM
Kathleena, yes, we effectively ruled out all dietary causes. That was lots of fun. But I have heard about quite a few people who get misdiagnosed with IBS when it is really celiac.

As far as an update on how I'm feeling...for those of you who care, thank you so much for the support. I love the disboards! Anyway, the dyspepsia and gastroparesis sypmtoms are pretty much under control for now. The anti-nausea med is doing an OK job. I had to play with the dosing at first - because it makes me really tired. I ended up having to cut a few work days really short because I could not keep my eyes open. But I now take a large dose at night and only a very small dose during the day if I need it.

When it's not one thing, though it's another. I was in the hospital for 2 days last week with a 5 mm kidney stone. :scared1: I've never had kidney stones before - but I'm always up for trying new things.:lmao: If you don't keep a sense of humor about these things, they will drive you insane (and for me this would be a very short trip.)

That's all for now. Hugs, prayers and pixie dust...

Oh my! I just posted on the thyroid thread, then figured I'd search "kidney stone" and your post popped up!

Sorry. Stones suck! :hug: I'm glad your meds seem to be helping your GI symptoms.