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Sunday, June 03, 2018

Why I have Been Quiet for Awhile

"The more serious the illness, the more important it is for you to fight back, mobilizing all your resources--spiritual, emotional, intellectual and physical." ~Norman Cousins, American political journalist, professor, world peace advocate, author (Anatomy of an Illness).

     I have been seriously ill for months now, waiting for an "immediate referral" for a colonoscopy and CT scan which finally was scheduled after two and half months. My symptoms were so eerily like the ones Les had for six months before he went in for a diagnosis that I have been sick with worry about the possibility of colorectal cancer. I am still waiting for biopsy results but the main diagnosis is Crohn's Disease and a return of Diverticulitis, which I was originally diagnosed with in 2008, requiring the removal of most of my descending colon and a bowel resection. After a diagnosis of Ovarian cancer in 2008, I was diagnosed in 2009 with stage III metastasized ovarian cancer and then Sarcoidosis--an Auto Immune disease which can manifest as acute or chronic. I have the chronic version. So of course I did what I always do then faced with life altering events; research. As someone who is allergic to more than a dozen well known and prescribed pharmaceutical drugs, such as Paracetamol, NSAIDS, Betalactans, Glycosides, and Gentamycin among many others, and for whom ingesting Antibiotics is a sentence in hell with side effects occurring in 48 hours that most people only experience after taking the drugs for 8-14 days, I learned to engage in rigorous research before agreeing to take any medicines or undergoing any treatments. I chose an alternative treatment for cancer called Gerson therapy and it worked. I delved into the depths of learning about Auto Immune diseases (AI) and discovered that as of 2009 there were sixty four known AI diseases and they are all treated the same way: massive doses of the cytotoxic chemotherapy drug Methotrexate and corticosteroids such as Prednisone, neither of which offers any cure for the sum total of sixty four AI diseases. They offer only momentary relief and come at a great price in terms of quality of life and long term survival. According to an article in the New England Journal of Medicine , titled Methotrexate for the Treatment of Crohn's Disease, "Patients treated with corticosteroids continue to have both complications of the disease and chronic toxicity from the therapy."4-7 (NEJM 02/02/1995; accessed online 06/03/2018). So Methotrexate is used to wean patients off Prednisone, somewhat like using Methadone to wean addicts off of Heroin. Neither drug provides a cure and often slows an illness down only for a short term if at all and the side effects of both are truly horrendous as far as I am concerned. Prednisone offers these life altering side effects: liver toxicity, neuropathy, optic neuritis, massive weight gain, dark facial hair growth in females, muscle wasting and weakness, trouble healing, fractures, moon face (common in cancer patients receiving steroids. Les developed it in the months before his death), abnormal fa deposits around the face, head and neck, adrenal insufficiency, heart failure, neutropenia which can lead to Sepsis, Inflammatory bowel disease (why use it to try and dampen an IBD such as Crohn's then?????), immuno-supression leading to chronic infections, and the list goes on. Methotrexate side effects are bloody vomit, joint pain, sores in the mouth and on the lips, blurred vision, shortness of breath, yellow eyes and skin, boils and acne, pericarditis, painful psioratic skin lesions, pancreatitis, neutropenia, Herpes, Pneumonia, Sepsis, osteoporosis, vertigo, Lymphoma, Leukemia...and the list continues. 
     So why are these pharmaceutical drugs prescribed for the host of varying AI diseases? Because no one knows what causes the onset of an AI disease. All that is really known is that for some reason the host's immune system refuses to shut off and rest. Instead it attacks the host body and causes an AI response. The other item my research uncovered the fact that if one develops an initial AI disease, one is six times more likely to develop a second or third AI disease than the general population will develop an initial AI disease.
      So what you may ask, Is Crohn's Disease? It is an attack by one's immune system on the intestines and colon causing massive inflammation, swelling, bleeding and serpiginous ulcers that creep across the tissues causing pus formation and necrosis (tissue death). This inflammation can often reach the rectum and cause terrible fissures and bleeding hemorrhoids. When one's digestive system is under such an attack it can no longer provide adequate nutrition, hence the reason my hair has been falling out by handfuls and I've had a white coating on my tongue that no amount of brushing will remove and why I have felt utterly exhausted. I usually cannot sleep for more than five hours at a time and I have been this way since I was a small child. I now find myself sleeping four hours at a whack, waking up to try and do a few things, after which I have to lie down again and sleep. When the digestive system stops functioning and we keep putting food inside it, the results are excruciatingly painful. I have not been able to eat any solid foods since May 7th when I ended up in the A&E for six hours after which I was told there was nothing they could do for me. I was prescribed codeine for the pain and sent home. I have lost over a stone in weight and dropped almost two clothing sizes.

Right so, what do I intend to do about this? I've found a very good protocol called Listen To Your Gut. In 1989, Jini Patel Thompson was weak, malnourished, and wracked with pain from a serious bowel syndrome, Crohn’s disease. Skeletally thin, she was unable to eat almost anything without suffering intestinal bleeding and cramping. Despite their best efforts, the medical profession was unable to help her. Jini was taking 13 pills a day, and her doctors told her that she would never be able to work, have children, or live a normal life. After years of feeling tortured by her inflammatory bowel disease, she literally decided to heal herself, or to die trying. Refusing surgery, she began a seven-year mission researching and experimenting with home remedies and natural treatments for gastrointestinal illness. Over time, Jini discovered eight key steps that nearly everyone with a colon or bowel syndrome can take in order to heal their gastrointestinal disease, and has been drug and surgery free since 1989.
These eight key steps are:
Providing bowel rest using a liquid diet for 6-8 weeks with homemade natural yogurt and Solgar Whey to Go! Whey isolate shakes, poached eggs, avocados, steamed potatoes and steel cut oatmeal.
Killing off the disease-causing bad bacteria and fungus in the gut with Oregano Oil
Re-populating the gastrointestinal tract with good bacteria with the use of (7-10 billion BFU's) probiotics
Healing intestinal inflammation and ulceration with Oregano oil, Udo's choice Oil, Ubiquinol
Resolving nutritional deficiencies with an IBS diet and Omega 3 capsules
Detoxing your living environment
Addressing the emotional factors underlying your disease
Balancing your hormones

I've read in-depth about this protocol and I have faith that this is something that will work for me. As I discover more information on diet, supplements and protocol I will post more.

22 comments:

christine thorp said...

Jaq,
You may remember my PhD was on Crohn's disease? It was a long time ago and things have moved on...
However, there's a lot I could say in response to your account, but it would be better in person as a discussion - I wouldn't dream of lecturing you! 😊
Until you get the results of the colonoscopy and CT scan and a definitive diagnosis I think you are doing all the right things, so I will hold my counsel
Also, I need to do some reading myself! 😊
In the meantime - hang on in there
I can take time out to visit if you like?
Chris xxx

Dragontatoo said...

I knew you would research & find a natural way to treat these conditions ❤️ Hooray for the World Wide Web! We love you 1000 Cinnamon Bears 🐻

Anonymous said...

Jaqueline,

There are sublingual vitamins and minerals available now. They may be of help to you at the moment.

Best wishes,

Catherine VK4GH said...

Sounds like you are on the right track with gut friendly foods, and good bacteria. Also no sugar, which I am sure you already know. Also recently I have followed a "Gutsy" food lifestyle lately and it advocates lots of veg and protein, but if you have any gut problems, only eating 2 veg at one time to help isolate which veg you have a bad reaction to. Hope you find a solution to improve your situation.
All the best,

Carol said...

Crikey Jaq, you really are going through the wars. I hope that things start to improve for you soon. As Dragontatoo says - hooray for the www. Kind regards and big hugs to you. Carol and George. xx

Judith Emery said...

So sorry to read how poorly you've been and hope you soon get some relief from the pain. Sorry we missed you before we headed south. We met up with our son and family as planned and are now at Polesworth and heading towards Gayton and the River Nene for the rest of the summer. Take good care of yourself and hope you'll soon be feeling better. Love and hugs. Judith nb Serena

Mrs. Jaqueline Biggs said...

Hi Chris,

Thank you and I appreciate your counsel if and when you have a mo. Just email me.

Jaq xxx

Mrs. Jaqueline Biggs said...

Hi Jesse,

Thank you for your faith in my research abilities! I love all of you too and miss you to the moon and back about four times!

Mamma xxx

Mrs. Jaqueline Biggs said...

Thanks for your input Katharine. Yep no sugar ever again. I allow myself an occasional small dollop of raw honey in my green tea and I use a dribble of Maple syrup on my oatmeal. Otherwise none.

Jaq xxx

Mrs. Jaqueline Biggs said...

Hi Carol,

Yeah it has been a rough, tough 16 months. this is not the way planned to spend my summer! Never mind, it is what it is and as long as I can regain my health, and find a job, all will be well.

Love and hugs to you and George,

Jaq xxx

Mrs. Jaqueline Biggs said...

Hi Judith,

I am sorry we didn't get another chance to visit as well. I so enjoyed meeting you and John. Perhaps next year?

Love Jaq xxx

Mich said...

I am so sorry to hear you are not feeling well. For two years my mum suffered the most excruciating abdominal pain with diarrhoea. A consultant sent her for a CT scan, results came back that they thought she had I.B.S and at 76 she was too old to go for any further tests.so she suffered and boy did she suffer. Like you i did that much research and we tried everything that we could. One day she sheepishly told me that her poo was black and i immediately got her back to the G.P and she was seen by another consultant within 12 hours, who ordered camera into her tummy. My mother did not have I.B.S or crohn's she had a bleeding duodenal ulcer. When this new consultant also looked at her old CT scan she found my mum also had an aortic aneurism. This should have been monitored annually. Mums symptoms did point to either Crohn’s or IBS but the point is every diagnostic test that is available should be carried out and then perhaps people would not suffer to such an extent as my mum and yourself and many others continue to suffer daily. Mum has successfully been treated. I also must point out that she dropped three stone in less than 7 weeks. Good luck and don’t give in until you have a more concrete diagnosis Kind regards Michelle

Mike & Phill Muir said...

Well, what a shocker! Keep your optimism high and your research at full speed. You will get through this.
Mike & Phill, nb GARNET

Marilyn McDonald said...

Hi Jaq darling, What a bugger!
If anyone can find a way through, it'll be you - with your dogged research skills and the ability to understand what you are reading!
Am I right in thinking that AI diseases are often brought on by stress? My mum has SLE for the last 15 years of her life, and I remember prednisone was a big part of her treatment - along with the accompanying weight gain and the digesics for pain - not a happy time.

I wish I had known you then and been able to take advantage of your knowledge...

Where are you now, sweetheart? We are arriving in the UK on 13 July (same day as that ghastly POTUS - I hope he causes us no delays!) and will be heading to the boat at Debdale the next morning. It would be great to see you, lovely.

Biggs hugs, M&Dxxoo

Anonymous said...

OMG! OMG! At times life is Sooooo not kind or fair. You deserve to be joyous, happy and free lady. And employed and pain free. You are a fighter and you'll tackle this challenge as you have your other ones. Me thinks you'll be making new discoveries about yourself to find some peace and subdue your gut. As you know, been there and it is Very Tough! Best wishes good friend. Karen in Pullman where it is Still raining!

Pip and Mick said...

Oh Jaq, you weren't well when we first tapped on your roof before Easter. You poor thing. We're sending heeling thoughts to you and hope you manage to adapt your diet to help improve things. Tilly sends a head nudge, in between finding friends, she likes the Stratford Canal.
Much healing love
Pip, Mick and Tilly xxx

Mrs. Jaqueline Biggs said...

Hi Michelle,

Well I have a concrete diagnosis. I am just waiting for the path report to say whether or not cancer was found but I suspect the results are negative. I've had a colonoscopy and an CT scan so we know it is isn't a bleeding ulcer. I actually don't have any bleeding going on.

I am sorry to hear about your mum and how difficult things were for her. I find the elderly--especially women--get short shrift often in most countries. It happened to my mom. she had a malignant tumor growing in her sinus cavity and for nine months her GPS treated her like she was some old, lonely woman wasting his time. He kept treating her for a sinus infection. By the time we got her to a proper doctor it was too late.

Kind regards,

Jaqueline

Mrs. Jaqueline Biggs said...

Hi Mike and Phill,

I am working on it. My body is actually responding very well to the protocol I've found. I am just really exhausted and I think it will take time to get my energy back as I heal.

I hope you are both keeping as well as can be.

Love Jaq xxx

Mrs. Jaqueline Biggs said...

Hi Marilyn,

My new permanent cruising are is Nantwich to Chester up here is Cheshire. I have a postal box and permission for a restricted cruising area. It would be divine if you made it up this way.

Yes, AI diseases are brought about by stress and if you have an AI disease you are more likely to develop and second one over time which is what has happened to me. I have chronic Sarcoidosis. And now I have Crohn's but my body is responding well to the protocol I've found. One day at a time as they say.

My love to you and David,

Jaq xxx

Mrs. Jaqueline Biggs said...

Hi Karen,

Despite the stress and uncertainty of this past year with Les' death and now this illness, I am so very fortunate in my friends. I know you know how miserable and painful this disease is. I absolutely agree with you about what I deserve. Now if I can simply find a way to have the Universe manifest it NOW!!

Love Jaq xxx

Mrs. Jaqueline Biggs said...

Pip, Mick and Tilly,

Thanks for the head butt Tilly. I do miss having a cat and that sure helped. xxx

Pip and Mick, Yes in retrospect I realize I have been ill with Crohn's since late last Autumn. I just thought it was a lingering tummy bug. Now we now...the rest of the story.

My body is responding well to the protocol I've found, thank goodness. It does mean a complete change in diet, preparing food and eating but I reckon those are not the hardest things I have ever faced.

I am so pleased you are enjoying the delights of the Stratford Canal. It is lovely to travel with you both vicariously.

Love and hugs,

Jaq xxx

Mike & Phill Muir, nb GARNET. said...

Jaq, stamina is terrible thing to lose, usually as collateral damage due to something more serious. Nothing much can be done until you clear the main problem, patience friend, patience.

NB Valerie & Steam Train by Les Biggs

NB Valerie & Steam Train by Les Biggs