Posted 5/25/2011 2:07 PM (GMT 0)
i have never been on a forum before but wanted help to get the best solution. Sorry for the length of posting and if its a bit disjointed but these are the notes i gave to my doctors, surgeons, consultants, nutritionalists over the past few years. Its kinda difficult to condense as there be some vital info that i may have omitted if i had. I am currently wanting advice on what to do next from anyone in the world, so it would be great if anyone can be bothered to read this through!! thanks
Medical history
I hope you don`t mind but I am writing this note as it covers a large period of time and I will no doubt forget some things or I may not put them across properly. Im male born 1978 and now 32.
To the best of my knowledge I had been fairly healthy as a child apart from when I was around 3 years old I had blood in my urine for which the doctors had no conclusive answers after a week in hospital and I was on antibiotics for a year or so on and off. This and a few other “normal” ailments over the years for which i have also been given antibiotics.
Since the age of around 13-14(1992) I’ve had problems with my stomach. During this period I was having a hard time at school and was extremely nervous and stressed at going to school each day. At this time I started to develop huge amounts of acid reflux and getting pains occurring in the stomach area. After a period of time it was agreed that I should have an endoscopy which resulted in finding stomach ulcers. From then I was put on zantac .
Again after several years of gradual worsening I was then suggested that I have triple therapy to eliminate the problem which was tried twice but was of no help. I was then sent again for another endoscopy (1995). This time however I was told that I did not have ulcers but a hiatus hernia and scarring from where there had previously been ulcers. At this point I was then put on the drug nexium. This then continued for around 7/8 years over which period I felt gradually worse. Nauseous, constipated, bloated, brain fog, lethargic etc. This has never stopped to this day and is at its worst now.
Then in around 2002 I had a serious bout of food poisoning causing campylobacter which I was in hospital for around 8 days. It was after this that the problems escalated even further over the following months and years. The main problem was excruciating pain in the small intestinal area and sometimes in the large intestinal area. Also fairly constant constipation then sometimes diarrhea, this still occurs to this day. Each time I would see my gp he would say definitively that he believed it was my appendix which on the 3 rd occasion of going to him only to be sent to hospital became very frustrating. In around 2004 I went to see a nutritionalist which I feel has certainly made me understand some of the problems and the causes. Over a period of time it is 100% clear that in eating anything with wheat, sugar, yeast increases the problem enormously. The idea then to stay free from any of these and associated products is a good one which I managed for nearly a year(including no alcohol!) but the constant inability to avoid these foods over the subsequent years have allowed the problem to flourish. I believed my problem to be the overgrowth of yeast or bad bacteria in the small intestines which is causing the problem. The pain can only be described as a constant dull pain with sudden sharp stabbing pains at intermittent periods. It is as if my system is like small brewery at times and find it difficult to digest food (maybe nexium being a pump inhibitor has affected it?). The other major and debilitating problem that has arisen is that I have also over the past 5 years or so developed pains in several tendon and joint areas. From tendonitis like symptoms in my shoulders, knees and severe back problems as well as, what can be worrying at the time, shooting pains through my head. I also had suspected cartilage floating in my knee which after surgery was found not be the case and they were completely at a loss as to the reason for the pain. Back problems have really been the worst though especially at the points at my back which lie directly where i have pain in the intestinal area especially where i believe the ileocecal valve is. These problems all move and change over time and have now stopped me playing any sports whatsoever. On the plus front I stopped taking any tablets for my stomach around 5 years ago after finding cider vinegar tablets which, for me, help the control of acid in my stomach to a small degree. I then felt i had to find an expert to help me.
I was now at the stage where I feel I have no other options. The natural remedies and staying away from certain foodstuffs and liquids seem to help but have not rid me of the underlying problem. My previous doctor has no understanding of my ailments and was unwilling to help in any way. I then got a referral to a leading gastroentaroligist. Here is what i asked:
Overall I am looking for absolutely any suggestions to help. I know this is a very long shot but I have read that taking nystatin along with possibly taking probiotics and keeping to strict diet over a few months may be a solution? I understand that this possibly unusual for anyone who has not been confronted with these problems before. I also know that reading anything on the internet and listening to any nutritionalist or herbalist is also not, for me, the definitive solution. I have taken any advice or ideas with a huge pinch of salt and only believe in anything which I have seen clear and constant results from.
I hope you don’t mind but I have some questions:
Have you know anyone to have anything like this?
Do you have any suggestions for what it could be?
Do you have any suggestion for a solution?
Do you feel that i will have to live with it as there is not enough medical science in this area?
Do you feel that complimentary medicines can help?
After i wrote this the consultant was prepared to try to help:
2 nd stage
At this stage i found a consultant who was willing to believe me and work with me. Whilst it was not the main problem , it was also found i had a hiatus hernia which had developed and acid was causing problems burning holes in the oesophagis which has been quickly resolved with fundoplacation surgey. It was a great relief and the acid reflux is now set aside and we started trying to find the problem with intestinal/bowel areas.
I then had several blood tests, lactose intolerance, allergy tests, endoscopy, colonoscopy, biopsies of small bowel, wireless camera endoscopy, mri scans, hydrogen breath test.
To try to keep it a little shorter the upshot was that nothing was found. The best hope, i felt, was the idea of the false positive with the hydrogen breath test. Here is the follow up:
Stage 3:
I had hydrogen breathe test twice. First time unfortunately i had forgotten about it and had eaten a lot of sugar, wheat etc the night before. When tested the machine showed apparently very high levels of over 30 or so which never changed much after the glucose drink. I probably did not not highlight how lax i had been in my prep for the test however we agreed to do it again. At the beginning of the second test i was at a measurement of 5. It increased but not enough to indicate a bacterial overgrowth and a positive test. Based upon all the tests, operations, biopsies etc my overwhelming belief is still that overgrowth of certain bacteria are present in the small intestine and to this end i am curious to find out whether the first test show that the transit times(overnight) of my body reacting with the broken down carbohydrates and sugars is taking longer to produce hydrogen thereby not giving an accurate result? The initial test showed huge difference in initial presence of hydrogen(?) than that of the second test where i had been extremely careful not to eat and drink as required. Interestingly i was also in even more pain than usual after taking the glucose drink. Im now at the stage where it is becoming almost unbearable to live with the pain on a daily basis and as such would, even with my aversion to taking antibiotics, wish to take a course of high dosage, short term antibiotic which cannot be absorbed in the intestine such as neomycin or nystatin or rifaximin drug that is not fully licensed yet in the uk(but is in u.s). This along with complete abstinence of all wheat, sugar (including natural occurring in fruit) preservatives, additives etc and high dosage of pro-biotics ( maybe vsl #3 )as well as small intestine cleanse(three lac with oxygen drops) product along with natural remedies such as pau d`arco, goldenseal, grapefruit seed extract, ginger, peppermint, Echinacea, and a few others in both natural state products as well as supplementsto give my body(small intestine) every opportunity to become healthy again. I am acutely aware that i have no medical knowledge and i am hugely concerned that taking any drug could possibly exacerbate the problem.
Stage 4:
Here is the stage i am at now and looking for advice:
It has now been agreed to have a course of rifaximin over 2 weeks at 1200mg per day and i am now going to do every other natural remedy in conjunction or following this.
Does anyone with a medical background know how rifaximin works? Does it just kill all bacteria and therefore suppresses the illness but will come back at a gradual rate or does it target what is believed to be the bad bacteria and therefore allows an environment for the good bacteria to flourish?
I was also keen to take nystatin as the candida like symptoms like athletes foot, itching etc are always there but maybe the fungus is allowed to grow with the small intestinal overgrowth ( sibo ) and im worried taking this might affect the use of the other antibiotic?
Anyone got any other ideas?
My illness seems to be so prevelant around the world but unfortunately seems to have the banner headline ibs or crohns etc. Thanks for your amazing patience in reading this. Ive also done this to hopefully show that there are so many others out there like myself that want to live a healthy life.
Thanks again