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07-31-2011, 07:31 AM   #1
hannah-rose
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Inconclusive

Hello all,

I'm 'undiagnosed' and probably won't get a diagnosis until I try the Remicade/Inflix and we see whether it makes a difference, If it heals me i guess i have crohn's, if it doesn't I guess I'm stuffed!

I've had all the tests done but the results were so inconclusive. I had a blood test for imflammation which came back at 16 - normal levels of inflammation are about 5 but if you're really sick it can be 400 so nothing really helpful there. I had an abdominal CT for my small intestines which was normal, and I had a colonoscopy which looked normal but the biopsies showed minor inflammation - however the inflammation could be attributed to the prep! How useful.

I had a biospy taken from my ulcer which showed lots of granulomas, but my ulcer was infected at the time (it's not now) the only tell tale piece of evidence is that a biopsy was taken from 10cm inside my rectum which had granulomas too (although I'd just used glycerin supposetries which probably caused some irritation.)

I've even been sent to the GUM clinic last week to have a doctor there look at me and take swabs etc.

I suppose if it is mild crohn's then all those teeny bits of imflammation could be attributed to it, but if it's not then all those bits of inflammation could be down to soemthing else.

No one can think of any other reason why my body won't heal itself - I'm young and healthy with no immune problems. I hope it IS crohn's so that there's a way to treat it.

I really really really hope infliximab works :S
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Hannah

Diagnosed 2011
Current meds: 6MP and plenty of exercise!
Previous meds: Metronidazole, Infliximab, Humira, Azathioprine
07-31-2011, 08:54 AM   #2
allieinwonder
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I completely understand where you are coming from...I want a test to come back positive for crohns too, not because I WANT a serious illness...I just want to be able to feel better!

I have had CRP levels like that as well in the hospital, and they decided to completely ignore them. The problem is is that Crohns patients can have completely normal blood tests during a flare. The author of "The Foul Bowel" has told me he has never had a blood test show inflammation the entire time he has had the disease. So it is not safe to rely on that test!

I think it is absolutely wonderful that they are trying a treatment for you! Most doctors refuse because of the possible side effects until they have real evidence. Then again, I also wouldn't put off all the tiny little indicators as coincidences...there are so many of them, so they all build up to it being some decent evidence!

I hope the medication helps!
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07-31-2011, 09:00 AM   #3
Nico85
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prob just piles lol
07-31-2011, 09:11 AM   #4
StarGirrrrl
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Hi Hannah, glad you stopped by for some support

There is huge debate about the normal CRP range, but most seem to agree up to 10 is normal, so you are still higher than you should be.

I have had that attitude too, like "yes it's 22-27 but I wouldn't worry unless it was 50 -70" Ummm hello I am above the normal range, I don't care by how much, it's still above!!" It's still indicating something is going on.

Some Drs, even GI's are obsessed with only diagnosing CD if you fit all the check boxes, despite CD being an illness which is notorious for not doing so, it's ridiculous. That or fobbing you off with IBS even when you meet all the accepted red flag criteria for not IBS.

Let us know how you get on with your treatment Am surprised they didn't offer you a Pill Cam or Small Bowel Follow Through, but I suppose the success of the treatment will give them and you an indicator either way.
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2006. Tummy issues (more IBD than IBS).
2009 joint pain/worsening tummy issues.
CRP 20-36 2006-now. C3/C4 inflammation markers huge,
2014 IDA & low B12.

June 2014 admitted to Hospital 3 nights as emergency transfused 2 units of blood. Dangerous case of anaemia.
Caught by pure chance!
Cause currently unknown but suspected CD.

Waiting on blood & stool results from January.

Hoping to stop anaemia treatment soon & lower B12 daily dose!
07-31-2011, 09:43 AM   #5
allieinwonder
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I completely agree with you star... my doctor when I was hospitalized literally told me that my CRP levels weren't high enough to care about, but they were higher than normal. And my normal GI said my vitamin B levels were low, but too close to normal to care about.

I think since they don't think they are going to find anything, that is effects the way they look at the tests. Like they don't want to find anything so they don't actually see the abnormal stuff, or write it off as something else. Thats why it is a great idea to get the test results and look at them yourself Hannah!

I betcha they are trying treatment first because it is much cheaper than a pill cam! I have heard that once you are diagnosed, and it is somewhere only a pill cam can see, that it is normal to be treated based on symptoms, not tests. It would get expensive very fast to do a pill cam every time you flare! O.o
08-01-2011, 02:34 PM   #6
StarGirrrrl
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Yes the Pill Cam in super expensive, but Hannah has private healthcare I believe so i'd have thought she would have gotten all the tests. But trying a treatment when the think CD is a strong possibility is probably a less stressful way for the patient than more tests.
08-01-2011, 08:29 PM   #7
Mayflower537
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Seems like infliximab would be more expensive than a pillcam. My guess is Hannah has a proactive doctor who IS treating her based on how she is presenting symptoms-wise and not solely basing his decision on test results. Why else would he pull out a big gun like infliximab/remicade? Whatever the reason, I hope it works so that you know the devil you're dealing with and get some relief, Hannah.
08-10-2011, 02:34 PM   #8
hannah-rose
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Lol i just read these I didnt realise you guys were still talking about me

Yeah I have private health care but theyve CT scanned my small intenstine and colonoscopied my large intestine so i think theyve seen all they need tbh. I don't think a pillcam would help much when the inflammation seems mild in my colon and severe in my rectum/anus.

Inflix would be very expensive but they have no other ideas. I mean literally this is all they're holding onto. I dread to think what'll happen if it's not perianal crohn's and inflix/remi doesnt work!

I feel like my doctor is proactive Mayflower, and i trust him completely. He's done a lot of different tests considering my only bothersome symptom is in my butt. I feel like he's looking at symptoms and test results and the opinions of a variety of other medical professionals (I've been to a GI, CRS, dermatologist and even the GUM clinic!) He even used the phrase 'big gun' when referring to Inflix/Remi so I think you've hit the nail on the head there. He knows it's an expensive, and it can be dangerous, so he wants to exhaust all the other possibilities of what it could be before he uses it.

I just hope it works so I can get a diagnosis.

Do you know something really weird btw? I've had worsening hayfever for the last 5 years or so, really terrible symptoms that werent controlled with over the counter medication. I took prescription antihistamine tablets and used a strong steroid nasal spray for about two weeks and my hayfever has VANISHED. Like, COMPLETELY gone. Not even a sniffle. I'm just hoping my body responds the same way to inflix/remi and the ulcer heals and I just have to work on prevention for the forseeable future.
08-10-2011, 05:19 PM   #9
Cat-a-Tonic
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Good luck with it, Hannah! Do you have a date set as to when you're going to start Remicade? I hope it works wonders for you. Keep us posted!
08-20-2011, 04:17 PM   #10
hannah-rose
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Good luck with it, Hannah! Do you have a date set as to when you're going to start Remicade? I hope it works wonders for you. Keep us posted!
Hey cat no date as yet, trying a topical steroid - much preferred to pred thank god - but its really hard to tell if it's working because i never look at my butt! The next step will be Remi/Inflix and hopefully soon. I'm scared because it's a drug that could have serious side effects, but it's basically the only option I have left to see if it's Crohn's. I've heard the word Crohn's from *counts* 5 doctors but I'm still not convinced lol
08-20-2011, 04:22 PM   #11
allieinwonder
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I'm the same way Hannah! Every GI and GP that has seen me has said Crohn's. I think it is SO great that they are doing meds instead of more tests...seems like a much better way of figuring it out! I actually want to request remicade if my pill cam showed proof, I have seen a lot of success from others with it!
08-20-2011, 04:26 PM   #12
hannah-rose
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I'm the same way Hannah! Every GI and GP that has seen me has said Crohn's. I think it is SO great that they are doing meds instead of more tests...seems like a much better way of figuring it out! I actually want to request remicade if my pill cam showed proof, I have seen a lot of success from others with it!
For me I think they just kind've shrug and say 'Crohn's?' as if it's a question lol, as if they can't think of what else it might be.

I'm not sure what other tests I could have after EUA, biopsies, bloods, CT, and a colonoscopy. I'm a bit sick of being poked and prodded tbh :P I've had my TB test for Inflix in preperation. I'll be posting a cheery photo of me hooked up to the IV if I get it don't you worry!

I hope you manage to get some treatment soon too tests are all very well but treatment is better!
11-04-2015, 09:23 PM   #13
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Hi Hannah - I know this thread is ages old, but I'm keen to know what your eventual diagnosis was? I'm intrigued by your similar manifestations that I have. Thanks.
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7 Perianal Abscessess April 9th 2015
4 Resulting Fistula's
1 Necrotizing Tissue Infection

2 Setons in place

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Flagyl since September 2015
Imuran since January 2016
11-05-2015, 09:59 AM   #14
Cat-a-Tonic
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Hi Needananswer, Hannah hasn't been on the forum in awhile, but I seem to recall that she was eventually diagnosed with Crohn's.
11-06-2015, 12:12 AM   #15
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Cheers Cat. It was a long shot I know but I was intrigued. It doesn't surprise me I suppose as I read somewhere that only 5% of Perianal abscesses and fistulas are independent of any other underlying condition. You guessed it, the rest are a manifestation of CD. 40% diagnosed with 1 year 50% years 2-5 and the balance after 5 years.
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