How, after 10 years, we accidentally stumbled upon a treatment for Ulcerative Colitis

ULCERATIVE COLITIS ULCEROSA

Although we had a sense of impending disaster for some months leading up to it, it was still quite unexpected when it did happen: ulcerative colitis. For ten long years, this disease significantly restricted many activities of my better half and those around her, and to some extent it more or less governed our lives. This is the story of a difficult time – and of a solution, which seems almost too good, and too easy, to be true.

Ulcerative colitis: How it all began…

Anyone who is directly or indirectly impacted by ulcerative colitis doesn’t need to be told what this disease is and how it interferes with the life of those affected by it. I am just going to presume that every visitor to this website is pretty well informed about it and will therefore dispense with the medical details.

I can remember the 3-4 weeks before my present fiancé suffered from a collapse as a result of symptoms caused by ulcerative colitis. At the time (May – July 2003), I was working in Barcelona, Spain as an intern as part of my university studies. For some time prior to it, my girlfriend had experienced severe discomfort because of her disease, but somehow nobody really knew about it. Everyone thought that her dejection and the resulting inability to pull herself together was merely some kind of laziness or sluggishness on her part. In reality, nothing could have been further from the truth. A tragic consequence of our wrong thinking was that we – i.e. the people immediately around her (esp. family) – were more prone to blame her for lacking motivation and being slack than to recognize the actual circumstances and to support her.

She came to visit me during the last two weeks of my internship in Barcelona. Her condition was pitiful: She had to constantly go to the bathroom because of the symptoms of ulcerative colitis; this was accompanied by quite a substantial loss of blood. Naturally, a result of the loss of blood was also a permanent, severe sense of dejection. She could hardly conceive of being away from the home, because she always worried about not being able to reach a bathroom in time if necessary. The poor woman had to go through so much… Obviously we (i.e. her family) knew that something was very wrong here. We should have probably pushed her more to go and see a doctor. I remember thinking back then in Barcelona that she should go to a hospital or see a doctor. However, we didn’t actually do anything about it, probably because we were due to leave Barcelona in a couple of days, and also because it is very difficult to express oneself in another language in a foreign country. And who knows whether our health fund would pay for this?

Anyway, we traveled back together to Germany (where I am from) in July 2003 after I had finished my internship. We only stayed there for a few days because we had planed a 5-day vacation with my brother and his wife in the Austrian Alps. Ulcerative colitis and the Alps: not a good combination!

In the end, the vacation didn’t turn out very well: once again, everything was dependent on the dismal health of my significant other. Of course she tried as best as she could not to let on, at least in front of the others. However, our companions also showed a certain degree of annoyance – they did not interpret my girlfriend’s listlessness correctly, because they weren’t really aware of the health issue. We also had to constantly stop during our hike to give her time to catch her breath. While I’m writing these lines and looking back knowing what I know now, I’m naturally angry at my behavior back then (=lack of understanding). So, here was a person who was suffering, and because of our lack of understanding we added a psychological dimension to this person’s physical suffering … 🙁

After the vacation she flew back to Greece, her home country.

It didn’t take long, actually only a few weeks, until her situation reached a crisis point. Ongoing, regular loss of blood finally demanded its logical toll. Finally her mother could convince her to go to a local doctor. Once there, it didn’t take long before she lost consciousness during the examination. She was naturally taken to the nearby hospital immediately.

Now the ‘adventure’ would begin.. and for the next ten years, ulcerative colitis would become a major part of our life.

Diagnosis: Ulcerative colitis…





After the relevant examinations in the hospital, the diagnosis was then made quite quickly: ulcerative colitis. Naturally, we didn’t really know what to think of it. In the meantime I had also arrived in Greece, because I had organized a flight from Germany to Greece on the same day I had heard that she had been admitted to hospital. Even if it had come late, the official diagnosis of ulcerative colitis helped us to understand that my girlfriend’s listlessness had nothing to do with laziness etc. after all. Blood tests revealed that because of the loss of blood (through the permanent bloody diarrhea) her hematocrit values were at a very low level. Only a little lower, and a blood transfusion would have been necessary according to the doctor at the time.

Of course back then we were not to know to what extent ulcerative colitis would influence and to some degree determine the years following. I think I was of the opinion that it would be over and done with quickly after treating it with medication. In truth the reality was nothing like my assumptions.

Standard ulcerative colitis treatment of a doctor in love…

Initially she had to take medication, which is the typical way to treat ulcerative colitis. We heard that the gastroenterologist treating her was very competent in his field, and really, so everyone said, too good for the small town in Greece he worked in. It was probably for that reason that it wasn’t long until he accepted a position at a hospital in the Greek capital Athens about a year later. But not before contributing to my girlfriend’s further distress by telling her one day at her bedside that he had fallen in love with her…

No-one could tell us much about what had caused the ulcerative colitis: the topic wasn’t sufficiently researched as yet, genetics, nutrition, … there was a potpourri of possible reasons.

Medical drugs like Asacol and the cortison preparation Prezolon during crisis times of inflammation now became the constant companions of my significant other. Speaking of crisis times: unfortunately these now came at regular intervals. We were able to ascertain that these crisis times, i.e. a more severe flare-up of the symptoms of the colitis, happened with a more or less steady regularity. Stress seemed to play a vital role, as did certain foods. She seemed to cope well with white meat, however, not so much red meat or alcohol. In order to ensure that the symptoms would not flare up again or intensify, she also had to forego a lot of other food products.

Ulcerative colitis: Is food the healer?

In the meantime I had finished my university studies and had emigrated to Greece in 2006 because of our relationship. As time went on I developed a strong interest in the topic of nutrition, fueled by my passion for jogging / trail running which I had discovered in Greece. I became increasingly interested in the effect that nutrition could have on the origin of ulcerative colitis as well as the fight against it. And somewhere along the way I came across ‘Paleo’ (link to book on Amazon >>>). Those who have already looked into this know that cereals, and also industrially processed products, are held responsible for many diseases of civilization. Paleo experts consider ulcerative colitis part of these and believe that certain components in cereals are the cause of it. This inspired me and I tried to apply what I had newly learnt to my fiancé’s situation, hoping that she would experience a (marked) improvement through giving up cereals etc.

Unfortunately I am neither a doctor in a white lab coat nor a nutritionist. Therefore my efforts were not successful… Instead of forgoing white bread, noodles, etc., I had to look on as she continued to suffer from ulcerative colitis and struggled with its symptoms. At the same time, not surprisingly, my frustration also increased, because I couldn’t understand why a person who felt so bad wouldn’t want to ‘experiment’ a little. I asked myself how much suffering one was going to put up with until one was open to alternative approaches, in the hope of dealing with the root of the problem instead of just dealing with the symptoms of ulcerative colitis by way of medication. I was often close to despair which then of course in turn surfaced in increasing tension between us. Stupidly such tensions erupt at the most unfavorable times psychologically, by which I mean that the symptoms were especially severe, my fiancé was at the end of her strength in any case, and at the same time I showed a lack of understanding for treating her condition with cortisone tablets, although the past had clearly shown that this was not a long-term solution. I believe that to some extent both sides had a valid viewpoint.

Relationship crises because of ulcerative colitis…

I did mention earlier on that ultimately ulcerative colitis had a big effect on our life. I particularly remember a situation in February one year when we wanted to go on a weekend skiing trip to the Bulgarian Alps with colleagues from work. Unfortunately, just at this point in time one of her ulcerative colitis crisis broke out again. I just wanted to do something involving other people again, something that we hadn’t done in a long time because of her sickness. The renewed flare-up of the ulcerative colitis drove me to despair, but also made me furious. I couldn’t and wouldn’t accept it, for various reasons. I also thought that a change of climate and some relaxation might do her good. It was a very difficult time in which our relationship was sorely tested, continually (= over several years!).

One has to imagine that I had even considered the information I had received about a surgical procedure. Such an operation would mean removing the large intestine because this is were ulcerative colitis occurs. The consequence of this, in turn, would mean that the person affected would be free of ulcerative colitis, but, according to my research, would have to go to the bathroom every few hours or so, because the large intestine was missing. Among other things this would mean that there would never be any uninterrupted sleep. Therefore in the end you were caught between a rock and a hard place. Even the fact that I actually considered this surgery an option surely proves how desperate I felt… for my fiancé, of course, it was never an option.

Ulcerative colitis and stress: A vicious cycle…





“There we go again…” if we would have had to pick a motto regarding ulcerative colitis, that would have been it. My fiancé’s job entails stressful months in May and June each year. As if on cue, we could always observe a flaring up and worsening of the symptoms exactly at that time. I couldn’t say with absolute certainty that it was just the stress or also the fact that during that time there wasn’t always sufficient time to eat properly or rather to devote enough attention to dealing sensibly with the topic of food. If you don’t have time during the day to eat, then naturally you just eat what you can lay your hands on when you come home in the evening. Often the summer was ruined because of this, then quite often the symptoms flared up so severely that they necessitated another course of cortisone tablets over several weeks…by the time the symptoms had disappeared again, summer and the summer holidays, were over, too. Therefore proper rest and recreation was never really on the cards. Once summer was over, the stress at work steadily began increasing again. It felt like a vicious cycle with no way of escape. Only those who have experienced it themselves will understand how this feels.

Ulcerative colitis and the “Specific Carbohydrate Diet”…

As part of my research into ulcerative colitis I came across a book in 2013 which was supposed to have helped numerous people in their fight against this disease. According to this book, treatment consisted in adopting the correct diet. The success stories were unambiguous, and for that reason I bought the book on Amazon without delay. The title is “Breaking the Vicious Cycle: Intestinal Health Through Diet” (link to the book on Amazon >>>) by Elaine Gottschall. In English speaking countries this diet is also known as “The Special Carbohydrate Diet” (i.e. a diet consisting only of selected carbohydrates). As with the Paleo Diet above, the book also emphasizes abstaining from certain foods, among them cereals. It took quite a while until I had convinced my better half to finally give this a try. However, it worked and she was motivated to do it. I was delighted and set to work putting the method described in the book into practice and taking on the task of being in charge of my fiancé’s diet. Even if she dug her heels in a little bit in the beginning, after only about 4 days she was able to feel an improvement, and was able to see the proof of it when she went to the bathroom. We began to experience something like hope!

I am no longer sure why in the end this test only lasted one single week and we did not pursue it any further. For some reason, ‘circumstances’ stopped us again. Although it was frustrating because the symptoms were becoming more severe again, ultimately it was not tragic, because salvation was near!

An ulcerative colitis study in Japan…

Then, in October 2013, something ‘strange’ happened.

First of all I had read on the internet, quite by accident, that one reason for ulcerative colitis could also be a bacterium, more specifically the so-called Fusobacterium varium. In a study (link to study >>>), which was published in 2010 in the American Journal of Gastroenterology, it was proven that patients with ulcerative colitis had responded quite well to a therapy with antibiotics. Under ‘Conclusion’ it even says: “his long-term follow-up study suggests 2-week antibiotic combination therapy to be effective and safe in patients with active UC including those with steroid-refractory or dependent disease.”

“Wow, that’s interesting news!” I thought, naturally with a huge portion of hope and renewed courage, that this might also be a way for us to get out of the misery which had been plaguing us for so long. I forwarded the article to my fiancé straight away, with a comment that she might want to discuss it over the phone with her trusted gastroenterologist (still the same doctor who had looked after her in the beginning, however, because of his move to Athens any contact was now sporadic and then only by phone). Unfortunately she didn’t follow my advice. However, because of what was going to happen soon after, this proved to be no longer important.

An unexpected treatment for ulcerative colitis!

Towards the end of 2013 my fiancé had an unplanned run-in with staphylococcus, i.e. bacteria which led to a crater-like, open wound on her calf. It’s origin was probably a mosquito/insect bite at the same spot which then became inflamed through scratching. As a result, it was necessary to take antibiotics.

We didn’t really notice it at first, but all symptoms of ulcerative colitis vanished as well. A few weeks later, however, I recalled this article and I realized that my better half hadn’t mentioned any symptoms in a relatively long time. When I asked her how she felt, she said she felt excellent and wasn’t really experiencing any symptoms. Hah!!

Many things went through my head: the length of time she had suffered, the study, the antibiotics… could it really be that we had more or less stumbled upon the correct treatment for ulcerative colitis by accident? Not much time had passed yet, better not to rejoice too early to avoid being disappointed later on. Did the time actually really correspond with when she had taken the antibiotics? We weren’t 100% sure.

As I am writing this story in Sept. 2014, however, about 11 months have passed and my fiancé continuous to be symptom-free. This is HUGE, given the regular issues over the past 10 years. Any niggling doubts about a clear correlation have gone. Out of interest I researched the topic again on the internet and located the original article. It mentions specifically that the penicillin Amoxicillin was one of the antibiotics given to the patients in the study. My fiancé distinctly remembered the name of the medication she had been prescribed: Augmentin, by the pharma company GlaxoSmithKline. And what does a quick search of Augmentin reveal almost immediately? Augmentin contains… exactly: Amoxicillin.

ulverative colitis antibiotics Augmentin |Colitis Ulcerosa | ελκωδη κολιτιδα

For me this is the ultimate proof – although I am not a doctor and my fiancé has not been conclusively examined yet – that this happy coincidence of the staphylococcus infection turned out to be a huge blessing.

I am very, very happy, because this whole issue has been extremely exhausting for us. This year we spent the first summer vacation not markedly affected by ulcerative colitis… 🙂

The ulcerative colitis seems to be healed… What now?

Ultimately, why do I bother to put this down ‘on paper’, spend money on a webpage, on translation into English etc. ? It’s simple: We have gone through a lot of suffering, so I know first hand what it is like when someone is suffering from ulcerative colitis. Looking back, I would have appreciated it very much if someone (e.g. a doctor!) had suggested trying antibiotics as a possible treatment. If we had known that beforehand and thus had healed the ulcerative colitis right at the beginning – we could have saved ourselves so much!! Now that we have gone through all of this (and hopefully have left it behind us), it would be very bad to not share this with others who have experienced similar suffering in order to finally put an end to it. Ideally, my story might contribute to shorten the suffering of others, or even to avoid it altogether. An acquaintance commented as follows:

“Sometimes ‘coincidence’ helps us, but in any case, one should never give up on principle.
Who knows the significance of those 10 years of your life?”

Maybe things really had to happen this way for me to be able to share my experience. I hope that I can help visitors to this website lead a life as normal as possible again. Of course I cannot guarantee that the treatment with Amoxicillin mentioned will ultimately work as well for others, but I absolutely think it is worth a try. However, please don’t try this on your own, but only together with a doctor/gastroenterologist that you trust. If the doctor does not agree to this, there is always the option of consulting a different doctor (provided there are no health problems in connection with taking Amoxicillin).

Life is too short to have all our fun spoiled by things which can be solved 🙂

One last thing: The purpose of this website is to inform the reader about my personal experiences. In no way whatsoever is it intended to give medical advice or to be a substitute for the advice of a professional doctor. I would ask all readers to always consult a doctor you trust and to never take any medications without the doctor’s approval.

UPDATE 11th of January, 2018

I wrote this article in 2016. It’s time for a short update.

It wasn’t all rosy after that – although I have to say that we had about 2 years of rest. Which is a great thing in itself, and I’m sure that many people with colitis ulcerosa would be extremely happy if they were symptom-free for at least 2 years. In this respect, I am certainly grateful for that.

In the summer of 2017, however, the time had come again: all symptoms were back. I personally attribute it to the stress my wife was under at that time, especially professionally, but also somehow family related issues. For about 4-5 months we were struggling with it again, or more precisely my wife.

In October I finally wanted to make a trip to the thermal springs on the Greek island of Evia. In the beautiful village of Aedipsós there is a very nice hotel in which we stayed. It’s called Thermae Sylla. It is not supposed to be advertising, and I am not getting paid for mentioning the hotel. But I want to describe it exactly as it was, in the hope that I can help other people. The special thing about this hotel: there are 2 pools with thermal water, of which one contains 50% seawater and 50% thermal water and has about 28 C / 82 F (if I remember correctly), the other one is 100% thermal water and has 35 C / 95 F.

Of course, it’s no big surprise that my wife enjoyed the thermal water very much, as it was a great opportunity for her to finally relax for at least 3 days (it was the end of October). Especially the pool with the 100% thermal water was her favourite one. Although the guidelines say that you should not stay in the water for more than 30 minutes, she did not stick to it, and simply enjoyed the water throughout the whole day.

We had booked the spa package, so we also included massages and peeling. All very relaxing. And I also gave her as a present the most exclusive massage on site (called Pantai Luar).

Long story short:

If I remember correctly, her ulcerative colitis symptoms were gone before we had finished the 3 days…. after 5 months, just gone…

We were there again over New Year’s Eve. Not because the symptoms have returned. No. Just because we liked it so much. A conversation with the hotel’s managing director during her second stay prompted me to tell her  about our experience during our first stay in October. She showed great interest in this story, but was not surprised. She said that the ratio of magnesium to calcium in their thermal water is ideal for relaxation and, if I remember correctly, the skin (a ratio of 2:3). Also, the water in this hotel is not diluted water, but pure. Meaning: they don’t use chlorine to keep it clean. Instead, the water from both pools is exchanged every night and filled up again, freshly from the spring from which the hotel draws – including cleaning with the steam radiator, every night!

I don’t know what ultimately led to my wife being symptom-free again since the end of October 2017. The water, the massage (s),…. probably everything together. I was in any case surprised, but I am grateful that we have probably found another solution besides Amoxilin, which at least for us seems to have worked more than once. Will thermal water like the one in Aedipós also work for other people? I can’t tell you. But at least I wanted to add it here as an update.

The outdoor pool: 50% seawater, 50% pure thermal water

freely accessible thermal spring (which my wife did not use, she was only in the pool of the hotel)

UPDATE 12th of March, 2018

In the meantime I strongly believe that the intestinal flora also plays an important role. A sufficient supply of nutrients could be helpful here. Ideally, these can be secured by nutrition or alternatively by a high-quality supplement.

Please do leave a message in the comment section provided at the end of this article, to share your own thoughts, experiences etc. Maybe you have made good experience with other treatments? It’s been amazing so far to see how many people would visit this website and actually share their experiences. Wonderful! And if you know someone who can benefit from reading this article, it goes without saying that I’d appreciate it if you share this website with others. 

Best regards from Greece, my adopted home,
David

P.S.: Please also read the comments from readers below, for further exchange.




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