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Crohn's Disease Forum » Your Story » Going 'full flare' for diagnostics / GI Specialist suspects some 'rare' form of IBD


03-12-2015, 04:39 AM   #1
Rev Rog
 
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Going 'full flare' for diagnostics / GI Specialist suspects some 'rare' form of IBD

Great news, I saw my new 'public hospital' GI Specialist yesterday, and are scheduled to begin a raft of diagnostic tests, including Pill Cam, endoscopies and laparascopic biopsies of small bowel. In NZ we have a totally free public health-care system, and pretty much all of the 'private' specialists are also part of our public health system. I can't afford to go private, as each appointment is $330, and a Pill Cam around $4,000, with colonoscopies around $3,500, but can be done for free through the public hospital, although it takes a bit longer to get the procedure, than going private. My last 'flare' lasted over 20 years since my Nissen Fundoplication in 1995, and only been in remission for the last 9 months, but having started on 65mg Pred, and not able to get below 30mg, Prednisone is taking a toll on my body, seizures (around 5 each day) are starting to be quite annoying :0). It's been an amazing last 9 months, from day 3 of starting Pred, I've been pretty much symptom free, but i knew it wouldn't last. Hopefully at the end of the tests and diagnostics (that my GI Specialist said could last up to 2 years), I will have a diagnosis and less intrusive medication to control it. The challenge is that the Docs do not know what I have, and have previously put me in the 'too hard' basket, as they don't have the funding $$ or time to invest in diagnosing me, but I think my persistence has paid off. I'm about to get very sick - as I need to be in full flare for all the tests - but hopefully it will be worth it. When I reduce Prednisone, I expect to be back on around 35 Loperamide per day, as well as as much Buscopan, Antinause, and Ceodine as I can, as well as 150mg Amytript and Quetapine :0) I'm actually quite anxious, as my Dr said he is going to be aggressive in my diagnosis, and wants to get inside to 'cut and chop' until he finds the cause. I know it sounds drastic, but after more than 20 years in misery, I will do anything, and will not go back to being that sick again, and have given him full permission to do so :0)

Last edited by Rev Rog; 03-12-2015 at 05:38 AM.
03-12-2015, 04:23 PM   #2
buttER
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This forum is really an insight in to how medicine is delivered around the world. I really hope the doctors can find the cause and give you the right treatment. It seems quite radical to force you into a flare - has anyone else been asked to do that I wonder?

I feel your enthusiasm and relief: good luck!
03-12-2015, 04:27 PM   #3
Rev Rog
 
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This forum is really an insight in to how medicine is delivered around the world. I really hope the doctors can find the cause and give you the right treatment. It seems quite radical to force you into a flare - has anyone else been asked to do that I wonder?

I feel your enthusiasm and relief: good luck!
Cheers for the encouragement :0) The Dr needs to be able to 'see' the disease, and while on the Prednisone it isn't there (in remission), and the benefits of the healing from Pred may last up to 3 months after I've stopped taking it. In order for them to provide correct treatment and drugs, they are required to have physical evidence via biopsies. So, horrible that I will have to be sick for this to happen, but understandable :0)
04-12-2015, 03:59 PM   #4
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So how are you? I got back into a flare this week and there is no way I would choose to make it worse, even though I would know how to if I needed to!

I hope you are OK........?
04-12-2015, 04:02 PM   #5
Rev Rog
 
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So how are you? I got back into a flare this week and there is no way I would choose to make it worse, even though I would know how to if I needed to!

I hope you are OK........?
Cheers, King of Orange :0)

Well, had the Pill Cam around two weeks ago, and then told it didn't make it past my stomach, so have to do it again on May 26th where they will use an endoscope to place it in my small bowel.

I am down to 15mg of Pred, and appear to be withdrawing ok, but are curently taking around 25 Loperamide, 8 Buscopan and as many Colofac I can get my hands on.

The difficulty too, is that I am having seizures, over 50 of them in a 3 hour period on the day after the Pill Cam.

So, all in all - doing ok :0)
04-16-2015, 03:19 PM   #6
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Oh my goodness, it doesnt sound like fun even though you sound upbeat in what you write. I guess you don't have so many plans for the next 6 weeks until the next attempt. Imagine a doctor watching the pillcam churn around your stomach for hours on end! Will it come out eventually?
04-16-2015, 03:29 PM   #7
Rev Rog
 
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Oh my goodness, it doesnt sound like fun even though you sound upbeat in what you write. I guess you don't have so many plans for the next 6 weeks until the next attempt. Imagine a doctor watching the pillcam churn around your stomach for hours on end! Will it come out eventually?
Thanks, King of Orange :0)

It is a difficult time. We are just saying 'good bye' to our foster/baby daughter in a couple of days (we have had her for the last 6 months from her birth), so this will mean my wife and I will get better night sleeps. I have to continue as my role as a minister/pastor, as well as my home engineering business - to allow us to pay our bills and live the way we have.

I don't want to push religion, or offend anyone with my engineering, so be warned that my 'church' website is religoius, and my 'engineering' website involves guns and hunting.

I only show the website links as a part of me sharing little more of my life, and who I am :0)

www.S-S-S.co
www.TeAtatuBaptist.com


I think the reason I have not been properly diagnosed over the last 20 years of being 'in a flare' after surgery, is that I just get on with life and cope with the disease/illnesses I have.

I have just turned 50, and as strange as it sounds, I now feel like an adult, and will push to get diagnosed and treated so that I can have a better quality of health for the next 25 or how many years :0)

To be totally honest, it wasn't until around 4 years ago, that I realised that having continual pain in your stomach wasn't normal. Because I have had it from birth, I just thought this pain was a normal part of digestion.

I know the above sounds strange, but is part of the reason I have (remained) un-diagnosed.
04-18-2015, 04:34 PM   #8
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Dear Rev
I completely understand. I have had stomach pain as long as I can remember too. I am over 40 and now seeing as I am feeling a bit better at the moment I am going to push for a diagnosis rather than being fobbed off nothing wrong just because that is the easy answer. I havent even had many tests done. Wouldn't it be great to have a better quality of life?!
I find the combination of God and guns really quite strange, but I can appreciate the engineering side of things.
I would find a degree in theology very interesting. I belive in alot of the bible as a historical text, the only thing that puts me off being a practising christian is the promise of a life everlasting. I don't want that. I want to be recycled completely.
I can't believe all the things you do despite all the physical and mental handicaps.
Does you belief help you in dealing with your lot in life? Maybe you can share any wise words with me.
04-18-2015, 11:17 PM   #9
Rev Rog
 
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Dear Rev
I completely understand. I have had stomach pain as long as I can remember too. I am over 40 and now seeing as I am feeling a bit better at the moment I am going to push for a diagnosis rather than being fobbed off nothing wrong just because that is the easy answer. I havent even had many tests done. Wouldn't it be great to have a better quality of life?!
I find the combination of God and guns really quite strange, but I can appreciate the engineering side of things.
I would find a degree in theology very interesting. I belive in alot of the bible as a historical text, the only thing that puts me off being a practising christian is the promise of a life everlasting. I don't want that. I want to be recycled completely.
I can't believe all the things you do despite all the physical and mental handicaps.
Does you belief help you in dealing with your lot in life? Maybe you can share any wise words with me.
LOL, I often end up as being the 'Chaplin' in most activities or groups I join, and people usually end up calling me Rev, even in the hunting and shooting communities I engage.

Recycling sounds great!

The reality is that we don't actually know what happens after death. We can have faith and beliefs, but there is only one way to really find out - and I'm not ready for that yet :0)

I honestly don't expect to be healed of my illnesses (via medicine or religion), but I do have hope and peace to accept them as they are, and that some relief can be found to live a better life without as many symptoms.

I am absolutely buzzing from needing 200 mg of Codeine this morn, and almost as much Buscopan and Anti-nause - as well as my 'itching reaction' to having taken 45 Loperamide yesterday :0)

When life hands you a lemon, take it back and swap it for an orange :0)

Last edited by Rev Rog; 04-19-2015 at 03:06 AM.
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