Crohn's Disease Forum » Your Story » Why I have joined this forum

03-29-2012, 04:42 PM   #1
New Member
Join Date: Mar 2012
Why I have joined this forum

I would like to relate my story which may add to the discussions.
I have had trouble with my bowels since I was a teenager and before. I was eventually diagnosed with IBS however I always knew that I had some sort of undiagnosed disease which although not life threatening (I thought) was always giving me some kind of medical problem.
At the age of 58 I suffered a heart attack while playing golf having been told that my AF was harmless.

With no medical support and with the Docs getting splinters with their head scratching I decided to diagnose and treat myself if I could.
I had worked out myself that the drug which worked was Heparin. This was administered as standard in hospital but not when I was sent home. So after many emergency return visits I suggested with the backing of my daughter who is a nurse that I should be put on Heparin. The consultant agreed to this but did not have a clue as to what disease I had.
I come from a very technical background in electronics and computing so I decided to do some research. After finally persuading one of the GPs in our practice to get some tests done for susceptibility to thrombosis ( having had a recent diagnosis ) I was surprised after 20 years of trying, to get the response that he would do the blood tests and the results would be back in 3 days.
He phoned me at home and told me that one test (anticardiolipin) was very high and later that evening told me he suspected I had antiphospholipid syndrome. Bear with me on this.
I managed to get to the world leading experts on Antiphospholipid Syndrome at St Thomas' Hospital London many months later where they told me I did not have Antiphospholipid Syndrome.
I was now on my own treatment due to lack of will to treat me by bemused doctors. I did not want another heart attack and that was the best decision I have ever made.
I found the treatment by chance which thins the blood by searching for something to cure one of my other (Unrelated symptoms, or so I thought).

So I then found that taking my own treatment the IBS started to improve and my chronic fatigue started to disappear along with other symptoms.

For 20 odd years I had been also looking at probiotics and the function of the bowel due to my IBS.

My treatment to date is so:

"Neprinol" started with 9 caps a day taken 3 at a time with water 30mins before each meal. (Blood thinning etc.) Then after 1 year 3 caps with water 30mins before breakfast. ( I found Neprinol better than Serracor NK for me)

Glucosamine Sulphate 1000mg and Omega 3 oil 1000mg taken twice a day.

"Align" Bifidus Infantis 35624 every day for 42 days then every 3rd day

Glass of wine every 3rd night only after going down to 3 neprinol caps (morning)

Camembert cheese and Yogurts as part of diet.
Reduction in sugar intake.

Gentle exercise working up to cycling and golf 3 times a week after 2 years.

I am now also having Hyperbaric Oxygen treatment and this seems to be clearing up the final symptoms.

I don't know what the cause of my disease is but it could be the foods I have eaten, infections accumulated, chemicals in the environment, antibiotics, extreme stress and even maybe inoculations, and genetic reasons or familial disease. I nearly died when I was 18 moths old having Measles, Whooping Cough and then Pneumonia which was treated with Penicillin. I also had a polio inoculation which went wrong when I was around 11 years old.
Could be any of these or all of these but the end result was that although I looked ok I was suffering from various ailments all my life.

The symptoms ranged from migraines to AF to back problems to bowel problems to depression to chronic fatigue, knee problems, hip problems, dupuytren's, peyronies, memory problems, dyslexia, tinnitus, balance problems, sports injuries and many more making my life a misery.

My theory is to get the blood working first hence the Neprinol then concentrate on getting the bowels to function properly with the correct balance of good bacteria. The alcohol is also an antiseptic which enters the blood stream which I do not take in excess.

I also avoid green vegetables particularly kale an broccoli due to the high vitamin K content. ( vitamin K is the coagulation vitamin)

The theory is that the Hyperbaric Oxygen allows my cells to get enough oxygen and oxygen kills off anaerobic bacteria in the body.
Once the cells are functioning properly then the Hyperbaric treatment can be tapered down to a maintenance level.

I can say if any of the things I was taking did not work then I would not pay for any more. I have been renowned in my life for being frugal to say the least so I can say that this treatment is working for me.
Everyone is different as I have found out from having a wife who has Multiple Sclerosis where every MS sufferer has a different story.
I hope this stimulates positive discussions and may be of help.
Love to all.
03-29-2012, 07:14 PM   #2
David's Avatar
Join Date: Feb 2006
Location: Naples, Florida
Hi IBS and welcome,

As soon as I hit the "Heparin" part of your story my forehead scrunched up and my mind thought to itself, "Isn't heparin an anticoagulant? I want M&M's". After fighting off the craving I Googled a little and found that Heparin has been found to have some positive results with IBD. Here's an example and a study here. Very interesting stuff! Thank you for sharing. I now need to research this further to see how an anticoagulant fits into my ever-evolving IBD theory

Again, welcome. I wish you all the best.
It's good to be back
03-29-2012, 07:20 PM   #3
David's Avatar
Join Date: Feb 2006
Location: Naples, Florida
Ah ha! Heparin inactivates Thrombin. And thrombin:

thrombin has a pronounced pro-inflammatory character, which may influence the onset and progression of atherosclerosis. Acting via its specific cell membrane receptors (protease activated receptors: PAR-1, PAR-3 and PAR-4), which are abundantly expressed in all arterial vessel wall constituents, thrombin has the potential to exert pro-atherogenic actions such as inflammation, leukocyte recruitment into the atherosclerotic plaque, enhanced oxidative stress, migration and proliferation of vascular smooth muscle cells, apoptosis and angiogenesis.
03-29-2012, 07:28 PM   #4
KWalker's Avatar
Welcome from St. Catharines. Originally from Essex and I used to see Dr. Howard in London for my crohns.

Totally unrelated but I have a feeling you're going to get A LOT of notifications everytime someone says IBS while referring to Irritable Bowel Syndrome
Age 2 (1992)

Previous Meds:
Methotrexate (oral)
Methotrexate (injections)

Current Treatment:
200mg Simponi, Psyllium
03-29-2012, 07:28 PM   #5
David's Avatar
Join Date: Feb 2006
Location: Naples, Florida
Good god. Thrombin is sold as a FOOD ADDITIVE under the brand name "Fibrimex". The food industry is pouring this crap into our foods!

A quick Google search found someone else concerned about this:


03-29-2012, 08:09 PM   #6
Join Date: Mar 2012
Location: Lawrence, KS

My Support Groups:
Kwalker, after all those meds, how are you now on none, and how long have you been flare free? I am considering starting Remicade, but wondering how they take you off of it if it's goal is to keep you symptom free? Thanks!
03-30-2012, 08:19 AM   #7
KWalker's Avatar
stacichristine, to keep it short the order of my sig. is the order of the meds I've been on. They took me off Remicade because it stopped working. I have been med free since around October 2010 and flare free for a few years now.

I don't want to steer IBS' thread from him so you can PM if you'd like.

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