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Crohn's Disease Forum » General IBD Discussion » Just diagnosed with ileitis had symptoms for years please help!


05-08-2013, 06:51 PM   #1
moose185
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Just diagnosed with ileitis had symptoms for years please help!

I've had health problems for about 4 years now. My main symptoms are extreme fatigue, joint pain, dizziness, abdominal pain, diarreha, fevers, eye inflammation, sinus pain.

It's quite a long list, I was recently referred to gastroenterology who found inflammation in my stool sample so they sent me for a Colonoscopy. My colonoscopy report came up with a diagnosis of ileitis of the terminal Ileum and patchy erythema in the right colon.

the report said consistent with crohn's but other possibilities should be considered such as TB.

This has been a big shock to me, i've never heard of crohns until now. From what I read crohns only causes stomach pain and diarreha.

Does anyone have experience with other symptoms with crohns? does it cause fatigue?

I'm just wondering if crohn's disease is the cause of all my problems?

How is ileitis normally treated?

thanks for reading any adivce would be appreciated.
05-08-2013, 07:08 PM   #2
ajalily1
 
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Well you've come to the right place my friend. So sorry to hear about you diagnosis. Put your helmet on as its going to be a bumpy ride. The research shows that people with Crohn's disease also experience joint paint, eye inflammation, and skin rashes, and other ailments as well. I have had crohns for 8 years and experience horrible joint pain and skin issues. And extreme fatigue, especially when I am flaring. It is a complicated disease and hard to get under control if left undiagnosed and unmedicated. My advice to you is find a good gasterologist. And to take your meds that you are prescribed to get your symptoms under control. Please keep us posted on how you are doing.
05-08-2013, 08:11 PM   #3
Lustforlife
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A lot of those could be directly or indirectly related to Crohn's. dizziness is not all too common, and I don't think sinus pain is likely related...but maybe then again it's inflammation associated with an autoimmune reaction, similar to the eye inflammation.
05-09-2013, 12:29 PM   #4
Spooky1
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The list you have given is all on my list of woe's with crohns. Sorry for the diagnosis. You are most definitely in the right place.
05-09-2013, 10:35 PM   #5
araceli
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Colon TB has the same symptoms that crohn's. Did your biopsies show positive for TB? Did they order a skin TB test? Colon TB also can go to your joints and you can develop reactive Arthritis. I know because my son had those result on his biopsies. But TB test came negative. Crohn's have different symptoms for everybody.
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Prior Meds Asacol, Prednisone, nexium
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05-10-2013, 04:55 AM   #6
SarahBear
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Crohn's could cause the symptoms you listed (and many others). And yes, it does definitely cause fatigue. Pain and diarrhea are the most common symptoms, but there are quite a few possible symptoms and everyone experiences it differently.

Here's an article on the treatment of Crohn's: Crohn's Disease: Treatment and Drugs. If your doctor determines that you do have Crohn's, they will (or should) prescribe one of those medications for you.

Are you and your doctor considering further testing to determine for certain what the source of your problems is?
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05-10-2013, 06:26 AM   #7
moose185
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Hi thanks for all the replies, I tested positive to a tb skin test in 2011 however tested negative for the tb quantiferon test and I was given six months of anti -tb treatment to take. At the end of it there there was no change in my symptoms it was hard to prove I had it. The only reason I was given it was because I had inflammation in the back of my eye.

Stomach pain has been pretty bad for. I'm still waiting for the biopsy results to come back. I just hope the doctors can treat me if I have crohns I've been sick for a long time. Doctors here in the uk don't tend to treat stuff unless your dieing. I'm worried that nothing will be done for it.
05-10-2013, 06:39 AM   #8
moose185
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Got my appointment in from the gastro clinic which is for 6 weeks time. I get the impression there in no hurry even though I'm in pain.

Are they able to test the biopsy directly for crohns or are they testing for inflammation?

Thanks.
05-10-2013, 07:37 AM   #9
SarahBear
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They test the biopsy for indications of Crohn's. Once you get to that point, it's fairly definitive. They're most likely testing for a few other things as well. Did they see inflammation when they did the colonoscopy, or have the tests just shown it?

A wait like that is fairly normal with a specialist. They're usually very busy. You can try giving them a call and stressing how much pain you're in - they may be able to move you up or put you on a cancellation list. If things are urgent, they often try to make time. But, if things get unbearable for you, please do consider going to the hospital.

Araceli, did they test your son's biopsies from a colonoscopy and find TB? I'm not entirely sure how that works.
05-10-2013, 07:53 AM   #10
moose185
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Yeah they saw inflammation when they did the colonoscopy and also in my stool sample. I'm guessing they are going to test the biopsy for crohns. Fingers crossed they find something. I guess it's just wait and see for now. Thanks for all the advice. I'm just in so much pain but as you say 6 weeks is normal waiting time.
05-10-2013, 09:44 AM   #11
araceli
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I hope you get an answer soon. Mean time ask them to give you something for pain. Sending Hugs your way.
05-10-2013, 10:04 AM   #12
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There are long threads about diets and supplement and probiotics and things (see a recent one linked below). It might be a good idea to look into these things sooner rather than later. Extreme diets are difficult, but some people claim they can be helpful.


http://www.crohnsforum.com/showthread.php?t=37489
05-10-2013, 10:27 AM   #13
ItsJustARide
 
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Moose

I'm here in the UK and while I am as yet undiagnosed, my Mum has had Crohn's for over 20 years and she has had some amazing treatment and really good doctors and nurses, luckily we still live in the area of the hospital she was initially treated at, so I've asked for my referral to go there.

Good luck with everything .
05-10-2013, 11:56 AM   #14
moose185
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Thanks aracelli and everyone on here for the advice. My biggest fear is the doctors not doing anything and not having a conclusive diagnosis I've been sick for so long any treatment which could reduce the symptoms would be amazing!
05-10-2013, 12:34 PM   #15
SarahBear
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Thanks aracelli and everyone on here for the advice. My biggest fear is the doctors not doing anything and not having a conclusive diagnosis I've been sick for so long any treatment which could reduce the symptoms would be amazing!
That is absolutely understandable and I relate 100%! It sounds like you're well on your way to a solid diagnosis, and therefore treatment. If your doctor does not treat you for any reason once a diagnosis has been made, I encourage you to seek another opinion.

I hope everything goes well for you!
05-11-2013, 10:36 AM   #16
Spooky1
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Hi, its just a ride,

well, isn't ur mum the lucky one lol. monies to spend on patients are short down this neck of the woods. Roll on a cure.

Good luck Moose.
05-12-2013, 06:06 PM   #17
moose185
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Thanks again for the support on here. I was wondering what is the official diagnosis for crohns? They have found inflammation in my terminal ilieum but I'm also waiting biopsy resluts.

My question is do you need to have markers in the blood as well as biopsy and colonoscopy results to properly diagnose it?
05-13-2013, 12:03 AM   #18
Spooky1
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I suspect that they need to check that it is not appendix related. Sounds like Crohns to me though. They tend to do a range of tests to make sure. Lets hope they don't want to sit on the fence for a while and see if it gets worse. They should offer you medications anyway.

Good luck, and keep cheerful if poss.
05-13-2013, 06:22 AM   #19
moose185
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I think that's my biggest worry that they sit on the fence and don't do anything. I've been sick for some time so even if it is crohns I'm just happy to get to the bottom of it.
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