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07-30-2011, 01:10 PM   #1
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So frustrated

I wrote another thread somewhere else on the boards and was directed here as I do not have a diagnosis.

Im just so fed up with everything at the moment. Bit of back history, around two years ago I started feeling sick everyday, would have upto 8 bowel movements a day, was tired a lot, felt weak etc, I also over the space of a few years lost a lot of weight and couldnt gain it no matter how hard I tried.

My mum was concerned because she had Crohns disease and needed surgery after 10 years of being mis-diagnosed with IBS.

So I went to see my gp who refered me to a consultant, they booked me in for a colonscopy. On my discharge paper, it said everything was normal and all they could see was inflammation in the terminal ileium, but didnt know what significance it had. Then had a barium meal, which showed nothing. Then eventually got my biopsies back which were also normal. I was discharged and I just gave up because I felt nobody was listening.

A few months on I just went with the option I had IBS as I had been told by everyone. I then saw a nutritionist and we felt it would benefit from going gluten/dairy free. So that is what I have done for a year. There was a vast improvement. However I would still get flare ups of suffering with diarreah and nauesa. I would be off my food and just crave things like bread and crisps.

Then last week I felt very rough with upset stomach. I saw one gp who said it was the level of acid in my stomach, was given medication to see if that helped. Just a few days had passed and I felt even more tired, plus my stomach, well to the left and right of my belly button is really painful to touch. I went back and saw another gp of examined my stomach and told me that the only thing that is there (where it hurts) is my intestines. That its IBS and its probably my intestines cramping.

I just feel like no one is listening to me and they havent for years. I also have joint pain, my wrists and knees have been hurting for weeks now. I get so bloated that i look pregnant, which I hate. Im doing regular exercise yet Ive got a huge stomach on me.

My mum has suggested I got private (uk) to get seen, but it just annoys me to that to get anyone to take you seriously you have to pay for it.

I guess its more than that, I have had mental health problems in the past and I know that all the doctors that see me, look at my records and just pass everything off as in my head or stress. I saw a GP about 4 months ago about the pain (it was just on the left then) and she told me it was probably a strain. Weird thing is I exercise a few times a week and I dont feel it hurt at all even when doing stomach exercises etc. Its definately not a muscle strain.

Im just so annoyed and starting to feel hopeless. I only work 4 hours shifts and after finishing I do not have the effort or energy to get things done that need doing eg shopping, tidying up.

I saw two GP's last week and really dont want to go back.
07-30-2011, 02:04 PM   #2
outlier
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waiting for a dx is awful.

have you seen a specialist either gastroenterologist or rheumatologist? it sounds like your gps are over there head. good luck
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Diagnosed: Crohn's Oct '09
Extraintestinal: scleritis May '08, GERD Aug '09, ankylosing spondylitis Feb '10
Current Meds: Humira, Asacol, Dexilant, domperidone, Tramadol and a whole lot of vitamins
No more sulfasalazine, Methotrexate, Xibrom, Pred Forte and Iron
07-30-2011, 03:02 PM   #3
allieinwonder
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I'm sorry you are so frustrated. I completely understand how you feel...I have had an IBS dx for 6 years now, and I have been going to doctors for my severe symptoms for 14 months now. It can get very tiring very fast.

First, you do NOT have inflammation with IBS. The most common area for crohn's inflammation is the terminal illieum, so it can fit with what you are dealing with. Whoever saw that inflammation and said it was normal was SO wrong!

I agree with outlier, a GI needs to go over your history again!

Where is your pain on your left side? My pain is on the left side too, right underneath my ribs. It never moves!

I'm so sorry you are feeling so lousy, but don't lose hope! I have found patience goes a long way with this type of illness. And we are all here for you in the meantime!

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www.behcets.com

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07-30-2011, 05:35 PM   #4
scottmyster
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Hi smile,
it is frustrating i recently have had a flare up of my crohn's. it's been i remission for 15 years. but, it is acting weird right now my pain is on the right hand side and nausea with no diarrhea, no bleeding just pain. normal bowel movements. but, i know it's my crohn's. no matter what my gp says so i forced him to put me on predisone for 4 weeks. Don't you do that! until you find out exactly what you have, it sounds like IBD but, i am no specialist. Make them take a closer look at your back ground and history like allie said.
keep you head up where here if you need us.
07-31-2011, 02:00 AM   #5
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Thanks for the replies, the last time I saw a gastroenterologist was over a year ago. Well I never actually saw the consultant in the two visits I had because she was away. So I saw someone else, the person who did the colonscopy. Before any testing, just from our first meeting of talking and feeling my stomach he said he was pretty sure he was looking for Crohn's disease, however after the colonscopy he was different and couldn't discharge me quick enough.

The last GP I saw said to me that if the pain gets any worse or that I have blood in my motions then to go back. However my mum made it clear that you don't have to have blood in your motions all the time, that she didint get that until it got really bad and she was due for the operation.

Yes the left hand sided pain and right hand sided pain start just below the ribs either side of the belly button. I actually cant believe how tender it is, in no way do I feel the pain is my intestines cramping from IBS.

Last night I got in to bed to watch tv and I just felt exhausted sitting up, didnt even have the energy to watch tv, I could feel the weakness in my arms and legs.

Another thing that I had a few weeks ago and have no explanation for is that for about a week everytime I woke up in the morning I was covered in sweat, my legs and t-shirt were soaking wet. I have no idea what caused it or why I was sweating so much.

Just a question, my GP mentioned another colonoscopy (she didnt sound like she wanted to say it), but Im wondering how useful that is, because it only sees the colon and the end of the small intestine. What if the inflammation is further in the small intestine.

I wondered if a wireless pill cam endoscopy would be better?
07-31-2011, 04:20 AM   #6
allieinwonder
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A pill cam sees the entire small bowel and, depending on the person, the colon as well. It depends on your digestive system and how fast it moves. The battery lasts 8 hours, so if your system moves slow it might not reach the end. It is also very expensive, so doctors wont do it as quickly as a colonoscopy.

Another thing that a colonoscopy can do is take biopsies. They can check for Crohns that way, and it is an easier way to get a diagnosis. If your crohns is in the Terminal Ilieum then the colonoscopy should reach that.

There are pros and cons to each test, and I highly recommend talking to your doctor about both of them. Usually the pill cam is done after a colonoscopy doesn't find the problem.
07-31-2011, 06:31 AM   #7
Mayflower537
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Yeah Allie is right. I had a pill cam after my c-scope didn't show anything. and another test was positive so he wanted to see the rest of my intestines. I think most GIs prefer the other scopes b/c of the ability to obtain biopsies. Also if there in unknown narrowing, the pillcam could get stuck. There are ways of checking that this isn't likely to happen but all in all it is a good test to have b/c it sees the parts other scopes cannot. B/c terminal ileum involvement is very common with Crohn's, a c-scope is a good idea to have. Hope you get some answers soon.
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