Being Diagnosed With Primary Sclerosing Cholangitis
Five days ago we found out from the Doctors what they think I may have but they aren't 100% just yet but this is what they are leaning towards until we see a specialist, but they believe it to be Primary Sclerosing Cholangitis.
Three years ago started to the lead up to the start of this diagnoses going to the Doctor when new to the natural world and not really doing my research trying to heal my self naturally on a whim - (Not a great idea, did learn my lesson to always research), that ended up with a baffled doctor that wanted blood tests.
With having to oddly pay for the test results from the nurses when they arrived, as they advised that we should have a print out, which normally you are told your results by a letter or a phone call from a doctor if it is unusual, from the notes that we had to work out was my liver function was high, our thoughts were that the liver regenerates I just need to stop stressing.
Six months later in the mail came a form to do more blood tests, we did them, then six months later another form, which got forgotten about until the start of this year when I slipped on a boat ramp and put a nice size gash in my head needing staples, (Yes staples like from a stapler, but medical ones that don't curl up in your head).
Thru this hospital visit the nurse looked thru all my notes and saw the outstanding blood test not done.
We asked the nurse to Please explain what was going on due to nobody had explained it, that my liver function was way above what it should be with the two tests, they needed the last test to see if it had dropped or not.
We grabbed the form to do once the head gash was healed which we did. Then we started getting phone calls saying we needed to go for a ultra sound as the Doctor wasn't happy with the tests, to see what was causing the high liver function.
Normally when We go for these scans when I say something is wrong with me they can't find anything wrong with me so I wasn't too worried.
We had a young trainee doing the scan they were pushing really hard that I was in pain, due to they were focusing on one spot taking lots of pictures, there was a clock in the room and we noticed it was taking longer than normal.
The lady said I need to get my manager to have a look at the pictures, she came in a while later, we could sense something wasn't right, they were unsure about something.
Basically the pipe from my liver to my bowel was slightly elevated, which they weren't surer what could of caused it, as they thought it could of been due to infection done by a stone passing, but I hadn't had any recent serve stomach pains.
When leaving I remember 20 years earlier I had serve stomach pains were I couldn't walk, then started vomiting on certain foods, which I had seen a specialists for but they couldn't figure out what was wrong with me their conclusion was my tummy button wasn't connected to my stomach. Was told if pain still persisted for a year to go back, it subsisted and life went on with only mild stomach pains that one doctor said was due to stress and gave me a little white sugar pill to manage the pains when they happened. Haven't had to take them for many years.
A few days later we got a call for a CT Scan, we book for a month later, we were able to ask the hospital nurse if she thought what happened 20 years earlier was related to what was happening now, she thought it wasn't due to that as the Liver regenerates.
The nurse could see we were getting concerned about results, she told us to ring our doctor the next afternoon as the results should be up on the result system they have for medical practitioners (In basic English terms.)
We decide to ring the doctors the same afternoon as the scan just to let them know the results were coming and could they Please call us as soon as they were available. We ended up speaking to one of the receptionists that said the doctor is to busy but the nurse will be able to let you know of your results.
We waited till the next afternoon no one had called, we rang back to find out that the doctor that had asked for the scans was away, the nurse had to wait for a doctor to read the notes, so we asked for the doctor that was working to Please read them, they did as they were the second doctor to ask for the blood test, but they were unable to tell us the results due to they weren't the one that asked for the scan, only the doctor could tell us the results that asked for the scan.
Booking an appointment we had to wait a week for the results, with having to go in earlier, but our doctor still was away, we were able to see the doctors nurse, that said we are able to have our results as they are ours, but they didn't want us to have them due to we may go and Google the results and may not understand them, that we should wait for the doctor for our appointment. They did let us know some information that ended up being wrong saying that I would need an operation, this is apparently true if it was Cholangitis, but this apparently is Primary Sclerosing Cholangitis.
The nurse thought it was a bit drastic that I was cutting meat out of my diet as we have changed my diet for about one month or just over, cutting back meat to now not eating it and taking some natural medications, working on being sugar free and process free.
For scans like CT when only the Doctor is to tell you the results, patients should be booked in at least two to three days in after the scan to get the results not seven days to worry what is the results.
Results Day
Finally to find out what the heck is going on.
Basically the Doctor thinks I may have Primary Sclerosing Cholangitis which is scaring and narrowing of the bile duct in the liver, for me they think it is immune that my body is attacking its self.
According to the doctor there is no cure for Primary Sclerosing Cholangitis, but there are medications that can be taken to moderate it, but they don't think I should need medication but will need to be a pin cushion to moderate the liver function.
We asked weather stress or food or change of diet could be causes as we noticed over the three testes it spiked and fell and spiked and fell and spiked. There must be something causing these spikes, but apparently stress does not affect the liver but our whole body, (I'm lossed on that logic I must need a degree to understand that one, because being average or simple it's flooded over my head.)
Google and Steem Search
We're all for finding a natural remedy as there is for everything we just need to dig, We didn't need to dig very far, the second link I clicked, but the first one gave some incite into this that the doctor didn't tell us, there are different seriousness of this, I'm at the start by the seems of things, but the worse end is liver transplant, you apparently have 25 years to live.
Now the second link is about how you can manage it, with a change of diet this is where I was crying...
No dairy products - and they highlighted no Icecream, wait what no icecream then I remembered there's vegan icecream.
No deep fried foods - noooooo... no hot chippies
No Gluten - no wheat, oats, barley etc. No bread .........
No processed foods
So what the heck can I eat according to this website ....
Raw fruit and vegetables as much as possible, coconut yogurt, seafood and organic meats, there was a few other things, this was at the top of my head.
Steemit search came up with some other information that apparently there is a drug done in America for it, not surer weather it just helps with managing the symptoms than a cure.
Moving Forward
I'm wanting to stay on not eating meat as we have seen a drop in weight which I've been trying for over four years to drop weight and have finally dropped 5kgs with cutting meat, exercise continued, and taking herbal medications that clean my liver and blood, with being good on being sugar free.
There are a lot of thoughts going thru my mind as this is becoming a long post, they may come in a later post, but we are in high spirts and being apart of Steemit and knowing there are so many people on here that post about #vegan, #makeithealthy, #nutrition, #health that we are in great hands with knowledgeable information that will make our journey a bit lighter and less stressful than those that don't have this support system of knowledge.
Tip
Anyone going through any medical conditions, make surer you have a advocate with you when seeing any medical practitioners, so they can ask questions that you may not have the clarity to ask at that moment.
Search for natural remedy's you may not find a remedy but you may find a way to manage it naturally.
A few accounts you may want to follow on Steemit for health tips, just to get you started as there are many more..
@woman-onthe-wing @plantstoplanks @lenasveganliving @vegan.niinja @heart-to-heart
@amy-goodrich @kiwideb @buckaroo @celestialcow @joalvarez
@s-h-e-p @deliciousplants @thetinykitchen @gardenofeden
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Crikey, what an ordeal! I'm sorry to hear about all... it's not easy waiting to find out what's wrong and then trying to find some answers yourself.
I'm glad you've been advised to avoid processed and fried foods... they are the cause of so much unnecessary illness. But you don't have to miss out on your favourites - ice cream is super easy - I simply pop a can of (organic) coconut milk + a banana (or fruit of your choice) into a blender, whizz for a moment, and pour into containers ready for freezing. Easy peasy, nice and creamy just like dairy ice-cream. And for chips - peel and slice spuds into chips, put them in a roasting tray, add a little coconut oil (I 'rub' it onto the chips to get them coated, but you don't need to use much, only a tsp or two) and roast in oven for 30-40 minutes at about 200-230 degrees Celsius. Anything else? When there's a will there's a way! I will design any recipe you like as long as you promise not to eat anything you shouldn't!!! (and you know you can ask for advice any time, you know where to find me in Chat if it's something private) x
Much love @biglipsmama <3
Awwh Thank you for the support, and the great alternatives, there's quite a bit to learn and implement to try to manage, Doctors advice was don't change anything as food doesn't have a effect basically, it was probing into the internet as we don't agree with that, to find out how it can be managed more naturally than just sitting waiting to get sicker.
Will hold you up to designing a recipe at a later date, were trying with soups but still using a meat broth till will manage the art of a vegetable broth.
The hardest thing is needing to do a over haul of the diet all at once, and realizing that you cant' eat much when you go out need to hunt down raw and vegan places and be a bit more organised with going back to basics and making homemade.
Your support means alot, Thank you so much.
I'm here for advice and support any time! I understand it's overwhelming and a bit confusing at the start when you have to address all angles of your diet. That doctor is an eejit if he thinks diet has nothing to do with it... As 80% of our immune system is in our gut, diet is the first thing we need to address when we become ill. Most disease begins in the gut, and if we were all taught that as children we'd be much wiser in our choices as adults!
But it's not as hard as you think to make the necessary changes. Often the ways you prepare food just need a little 'tweaking' not totally re-vamping! For example, homemade oven chips with a healthy oil. Then there's no problem. Or like you mention soup - you really don't need any additional 'broth' or stock to add to it, either meat or vegetarian.
For simple soup: finely dice onion & garlic... saute in a pan for a few minutes until softened (this forms the 'base' flavour so you don't need to add any stock)... add whatever veg you want the flavour of your soup to be (either cooked or raw and diced up small so it cooks quicker), add water, herbs and seasonings... that's it! So simple! I see soup recipes posted all the time that include 'vegetable broth' in the ingredients list, and I don't understand the point! Just flavour it yourself! And if you want it thicker, add mashed potato, sweet potato, or extra veg.
I hope I'm not being patronising by dishing out advice... I don't mean to be. Most illness doesn't need to be endured, if only we can educate ourselves and only put into our bodies the right things. Otherwise we break down, just like putting the wrong fuel into a car.
Thank you, It is overwhelming and confusing especially when medical practitioners don't like to offer much help or direction, then the waiting game of who to see next, that is the frustrating part at the moment. The doctor is female, but I don't think it would of mattered really as the doctors here don't like to give options unless it's in their computer system linked up to the next door chemist, not surer weather they aren't allowed to offer natural remedies which food would come under.
Thank you for the soup recipe will give it a try we normally make a broth from meat which is our soup base, it's just as you say tweaking what we are used to and simplifying food and cooking methods.
Defiantly not patronizing it's fabulous, sometimes something that can be a simple fix can't been seen when your in a funk cloud of thinking about the diet changes, this surer makes it so much easier to navigate thru.
I absolutely agree - sometimes you can't see the wood for the trees!
You will be fine and in no time at all you'll be preparing the most healthy meals without any problems/perplexities! I recommend @amy-goodrich as inspiration for meals, as she generally uses ingredients widely available, and the recipes are straight-forward and very well balanced (and she designs them to be healing to keep her husband's MS at bay). I would also recommend @plants-to-planks as she's not only vegan but a nutrition consultant and very approachable.
Doctors are funded by big pharmaceutical corporations so they're not really able to recommend natural approaches, not even diet. They're not trained in the truth regarding nutrition and natural medicine, but their training focuses on synthetic prescription drugs (which in most cases I would urge anyone to avoid at all costs!) If you're willing to put the work in with research you will find truth and effective ways to heal yourself. Try to avoid 'official' government and big health organisation websites, but look for independent research, medical journals, personal testimonies and blogs - and cross-reference EVERYTHING! x
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Sorry to read what you have been going through, it must be super-stressful :(
The medical system really pisses me off sometimes - and they wonder why people do go off and Google for more information!
You do what feels right for you!! <3
Thank you for your support.
We're all good, life happens you just keep going, making some changes along the way.
We've had so many issues with the medical system, that we are learning not to take their information as solid, we have even had doctors use Google quite a few times in our visits, they are human also and they can't store everything, so it's best to take some information with a grain of salt and follow up with your own investigation till you get some solid information.