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IBS is such BS!

I saw my pcp yesterday and I brought in my big ol' list of symptoms and held back tears while telling her I'm sick and tired of feeling like shit all the time. She's not very knowledgable about gastrointestinal issues but she said she would try to help.

I was hoping she would give me some info to take with me to my GI appointment on Friday but as always, I left the appointment feeling more frustrated than ever.
She said it sounds like IBS and fibromyalgia.
I'm sorry but that doesn't fit. It seems like IBS is just the easy way to get a complicated patient out of your hair because you don't really know what's wrong and don't want to go through the time and testing.
Each er visit I have been to they have said that it is most likely Crohn's.

Fibromyalgia doesn't even come close. My pain is my intestinal area, it's tender on the right side when pressed on, and my back hurts all the time under my right shoulderblade. I occasionally get jet joint pain in my ankles and my hip but not often enough to care about it.

I told her about my episode on Sunday when I woke up at 3am going, "Ow Ow Ow Ow" because my intestines were cramping up so bad. I massaged my stomach to see if that would help but I found a hard spot and when I pressed on it my bowels made the loudest freaking sound bowels could possible make and I felt the hard spot go soft and I could feel liquid rushing through my bowels and I took off for the toilet. There goes another nights sleep lost by sitting on the toilet for hours.
She didn't have anything to say about that. Maybe my GI will, although I doubt it.

Well, my pcp said she would call the GI and talk to him, about what I have no clue.
She knows I don't like him and want to go to someone else but she encouraged me to wait it out for a while.

Screw this.
 

farm

Captain Insaneo
That sucks! Can you research and find another GI? I have fired 2 GI's in my 15 years career of Crohns. There are some good ones out there, but you do have to find them.
I hope you find one soon and get a REAL answer!!
 
So sorry for what you are going through and as I read this it sounded EXACTLY what I went through for 2 years before they finally diagnosed me with Crohns - Told me I had IBS, fibromyagia - ball of pain in the right side - up all night with the D...hang in there - have they talked about a colonoscopy? Or an upper GI series where they make you drink this awful dye stuff then take x rays and they can then see the inflammation in the bowel? INSIST on these tests! This is the only way they can find it...blood test will not find it often or regular x rays or telling you you have IBS - I feel your frustration girlfriend - hang in there and keep bugging them!
 
Hang in the PPL - it takes time sometimes to get that magical diagnosis. Sometimes things just have to get sooo obviously bad it is ridiculous. How many trips to the ER have you had?? Don't they ever do a CT scan on you when you go in?
 
I did the colonoscopy and afterwards they said my terminal ileum was red. No more information other than that. This will be the first time I have seen my GI since the colonoscopy. Endoscopy showed a hital hernia and one of the sphinters was broken and staying open.
I think I will insists on a small bowel follow through when I go in on Friday.

My pcp said gastroenterologists are hard to get an appointment with and many don't accept my insurance. Overall discouraging me from finding another one. :voodoo:

This will probably be my last visit with my current GI and then I will find a new one.

My Mom has celiac and is seeing a really good GI but they don't accept my insurance. :( She had problems her whole life and finally got a diagnosis a couple years ago. I may see if I can go in to her GI and just do a cash pay to see if she can help.
My Mom was telling me how her GI spent two hours with her going over her history. Mine spent about 15 minutes and said I have a sensitive system, its probably IBS and need to take a day off and go to a friends house. :ybatty:

There is just such a HUGE family history of gastrointestinal issues in my family (including Crohn's and Celiac) and I believe that everything needs to be ruled out before they decide to label this as "IBS".

I tried going gluten free and was feeling better for a year until I started getting really sick all the time again. During my year of being gluten free I probably had about seven times I got really sick, but overall I wasn't feeling crappy ALL the time like now.

I love this forum because I feel like I can relate to everyone here. I don't feel all alone in my poopy sorrow mess.

My Mom is coming with me on Friday and she will be wearing her Mamma Bear suit. It's hard to stick up for myself when I start crying when I talk about my stomach issues.
 
Awww, lonely poopy sorrow mess - we try and make a party of it!!! I forgot about the lovely pics of your scope (with the smiley face and all ;) ) That did look pretty darn nasty - but what the heck do I know? Let us know how that appt goes on Friday!!
 
Peaches said:
Hang in the PPL - it takes time sometimes to get that magical diagnosis. Sometimes things just have to get sooo obviously bad it is ridiculous. How many trips to the ER have you had?? Don't they ever do a CT scan on you when you go in?
I've had about 4 trips to the er this year. Each time they say it's probably an underlying bowel disease such as Celiac or Crohn's. The last time I went was in October and the doc said it is most likely Crohn's. They did a cat scan that visit but they didn't find inflammation. I wasn't feeling like I was in a flare when I went, but my Mom insisted that I go to get checked out since I was having bowel incontinence. (I know seems stupid but my Mom was just worried and drove over to my house to take me.) Cat scan just showed a dialated kidney, narrowing in the urethra, and bowel retention. Funny that you can still have crap stuck in there but still be pooping all the time!

I've never been able to make it to the er during my severe bouts of cramping and pooping. I've always been curious if they would be able to see what was going on with my intestines when that is happening and give me some pain meds. The cramping is just the worst. I'm stuck on the floor in a little ball during the cramping trying to get to the bathroom. Most of the time I have to sit there for an hour until my insides start gushing out. :(
 
Peaches said:
Awww, lonely poopy sorrow mess - we try and make a party of it!!! I forgot about the lovely pics of your scope (with the smiley face and all ;) ) That did look pretty darn nasty - but what the heck do I know? Let us know how that appt goes on Friday!!
Hee hee. Yeah, when I first saw it I was like, "Ewww! It looks really diseased!" That's what everyone else said to but who knows. I saw a picture of a normal terminal ileum and it was nice and pink and smooth. Mine looks like some sort of nasty!
 
Oh yeah, my PCP found white blood cells while doing a urinalyisis and ended up having to send it to the lab. Still waiting to see what it is.
Ugh, this all sucks.
 
T

Tamesis

Guest
I can totally empathise. I have been having the same problem, however only for two months....i only hope it doesn't go on as long as for you! :(
I go see my GI for the first time monday, and my biggest fear is "oh, it's just ibs, learn to live with it"
hopefully you got some answers on your last visit.
 
I've been dealing with gastro issues my whole life. I remember having doctors poke at my stomach, give me meds, and wonder why I had anemia and I why I was losing weight.
My gastro issues just became so normal for me. I thought it was like that for everyone.

Everyone else but my GI thinks I have Crohn's. The ER docs always tell me its most likely Crohn's. My friend's Dad is a GI doc and he thinks I have Crohn's, my friend in med school thinks its Crohn's. I just need a new doc. He has me on Levsin and Elavil and I still ended up in the hospital last week with terrible pain.

The GI doc at the hospital found dialation in my intestines in an xray and I told that to my GI and he said, "Who is this doctor?"

In the hospital last week morphine wouldn't take away the pain. They finally started giving me dilantin which allowed me to sleep to escape the pain for a while. I have percocet and vicodin now and it's just like taking suger pills.

Something is wrong with my GI doc saying that I have the most severe case of IBS he has seen and IBS patients don't go to the hospital. I think that says that it's not IBS right there.
 
So frustrating! Surely you could see someone else? Seems wrong that you are not getting any treatment really. Have thye tried you on steroids, just to see? If that helps then you very likley have an IBD of some kind.
 

Crohn's 35

Inactive Account
I find most doctors as well as GI will say IBS if they cant find Crohns. And most doctors who can find anything will always say Fibromyalgia... stinks! Sorry kiddo.
 

mwb3779

Kitchenhawk
My first GI doc when he did my scope and blood work, didn't find Crohn's through the blood work. He sent the biopsies to a pathology lab which dx me with Crohn's. It was weird my GI doc said, which is why he sent it to a pathology lab to dx. I would be willing to bet it isn't IBS. Its some kind of IBD.
 

forum contributor

Captain Obvious
I agree w/IMP - get a 2nd opinion. Or a 3rd if necessary!

My original misdiagnosis by the 1st doctor was IBS. He told be to take fiber pills and drink plenty of water. He wouldn't do any tests on me. Said they weren't "medically necessary."

Keep going, girl. Stay in charge of your health. Good luck!
 
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