Hello,
What I'm about to write has been on the forefront of my mind for one and a half years. What was meant to be an exciting holiday turned into a horrible story that dramatically affected my life.
By the way, if you are an IBS sufferer and do not want the detailed version of the story just jump to the section titled 'Path to Recovery'. The section titled 'Doctors, doctors and more doctors' also has some good information.
Where it all Began
It all started when the family received an exciting invitation to my cousins wedding celebrations in India. For those who do not know, Indian weddings are pretty massive, especially when it concerns my cousins because they probably spent a couple of million on it. To give you an idea some of the functions had famous celebrities perform and some of the functions involved four photographers and four cinematographers at one time. I felt like paparazzi were following me and I'm not even famous. Quite an experience.
Alas, I am not here to discuss my cousin's wedding. Instead I'm here to discuss where it all went wrong. And before I continue, there is a reason for writing this. I am hoping that it may help others that received the same problem and are at a loss as to what to do.
The night before, I excitedly packed my bags. I'll admit, I was dreading the flight a bit. Not the biggest fan of long flights. I can't sleep on planes, so that never helps.
We arrived in Delhi. The sun was shining through the thick layers of smog, there were hundreds and thousands of people scuffling all over the place, and the smells overwhelmed the senses. It was a great day. We greeted family members with large embraces and settled for a nice long sleep.
The next day, another lovely shining thick smog day filled with roaming dogs and cows, three wheeler bicycles and no traffic rules. If there was a place to drag race, it would be India. In fact, I reckon the cops would join in with the fun.
By evening, however, something wasn't quite right. I started to feel a little queasy. I said to myself, a nice bath would fix me right up. Unfortunately, that wasn't the case. I still felt sick, and growing more ill by every minute.
Then it happened... the vomiting and diarrhoea began. If anyone is fond of travelling to developing countries I'm sure you would understand the horror. Now usually when I get sick in India I may vomit perhaps one or two times and then the healing process begins. I was not so fortunate. Eight hours later I was still vomiting, excreting green diarrhoea, urine filled with blood, my pulse slowed to 50, my temperature increased to 103, my hands and feet became numb, I could barely speak or move, I had severe gastroenteritis (inflammation of the bowl), and my vision started to become blurry. I thought to myself, 'I really didn't think I'd be going this way'.
Finally my parents rushed me to a nursing home. In India nursing homes are smaller versions of hospitals. Much smaller versions. With a couple of doctors and nurses. They immediately put me on a drip and started with the antibiotics. This did make me feel better. After taking blood samples and a stool test they diagnosed that I had amoebiasis. Nasty parasites from India's water supply somehow entered into my body. I thought I was being careful by drinking bottled water, but I guess I just got unlucky. Who knows where I got the parasite from. I stayed in the nursing home for half a week. My arms became so swollen from all of the medication they continued to inject into. The doctors there wanted me to stay longer, however, I was able to swallow medication and eat food. So we are assuming that they wanted to keep me there to get more money. My dad was able to persuade the doctor to let me go so I can attend my cousin's wedding functions. So for the next month, straight out of hospital, I was going to wedding functions that lasted until four in the morning and taking 8 different types of medication a day. I know, not wise, but I did travel 14 hours roughly by plan to India for the sole purpose of going to my cousin's wedding.
The month was over, the wedding functions ended and I headed back home feeling relieved that I somehow managed to survive and going back to a safe, non-lethal environment where I could breathe in the air without any hesitation.
The Symptoms
You would think that everything would be hunky dory now. Boy were you wrong. When I arrived back to my home town I pretty much went straight back into work. The work I do can be pretty strenuous at times. Lots of the time it would be meeting after meeting after meeting. At times during the day or evening I would have a little abdominal pain. I thought to myself, no worries, I'll just take some yakult and be on my merry way. It wasn't getting better.
Then the nausea started. Every morning I would wake up with bad nausea that would sometimes last all day, and if I was lucky last until lunch time. The nausea was so bad that it started to get difficult to eat and concentrate at work, attend client meetings and produce quality work for my peers and bosses. Something definitely wasn't right. So I went to see a GP and he prescribed Nexium (an acid producing prohibitor). I started on a high dose, 40mg. It did seem to help with the nausea, but only sometimes. So really, it wasn't really helping. One month later and I'm still struggling. I decided I needed to take some time off work. Like three months off. Got to say, I'm very lucky that my boss was very happy to give me the time off. A seriously nice guy. I was thinking that perhaps the time off would help me to get back onto my feet and rid of this thing once and for all.
It didn't.
That's when my GP decided that Nexium wasn't really helping and that I should see a gastroenterologist. Seriously, by the end of all of this, I reckon I have become quite the expert on the subject. Anyway, back to the story. First of all, gastroenterologists are pretty busy people. It's impossible to see them on short notice. From memory I think I was able to make an appointment in a months time. Maybe longer. When I saw the specialist he suggested that I get a gastroscopy examination. I agreed. Unfortunately sometimes getting these sorts of tests or surgeries performed can take some time. I ended up waiting for roughly two months until I had the scope test. And yes, during that time I had to deal with the symptoms of nausea and severe abdominal pain and discomfort. Finally the test was performed and they diagnosed Gastroesophageal Reflux Disorder (GORD), or otherwise known as Esophagitis (inflammation of the oesophagus). So I was prescribed Somac 40mg (an acid producing prohibitor, just a different brand to Nexium). The specialist told me to take it for a while and stop taking it when I started to feel better.
Roughly a month later it was time for me to go back to work. Unfortunately I was not yet better at this time. I started the week with heavy nausea and abdominal pain, whilst attending meetings and completing work. It was not fun. I can assure you. I was desperate. I went back to the specialist and he suggested to take more Somac. By the way, in addition to Somac and Nexium the GP and specialist prescribed different nausea tablets. Stemetil, Maxolon and Domperidone. None of which helped in the slightest. So I tried to take more Somac.
A few months later and I'm still struggling with nausea and abdominal pain and discomfort. Will this never end. Sometimes the pain got so bad that I had to rush to the disabled toilets at work, lie down on the ground and crunch up until the pain went away. Then I would wipe away the tears, attempt to stand up tall, and go back to my computer to continue working. My friend then decided that I should see her doctor who specialises in Traditional Chinese Medicine, herbal treatment and acupuncture. She even booked the appointments for me. When the first appointment came I thought that it would just be a consultation. Let's just say that I was pleasantly surprised. Upon first examination he told me to lie on the bed and straight away stuck needles in me, and oh my was that painful. I had no idea what was going on. Then he said "I'll be back" and left the room. I had no idea where he went or how long he would take to come back. 10 minutes later under excruciating pain and still no-one returned. 20 minutes later and no-one returned. I even attempted to call out for someone but no-one heard me. To my relief my friend arrived. I asked where the doctor went and she laughed "he'll be back, you need to try to relax". What no one mentioned to me before was that the longer the needle stays in the better it is and the reason for why it was so painful was because of my condition. The pain is meant to die down when the condition improves. And so the treatment began. I was meant to take some not to tasty herbs three times a day for three months and see him weekly for three months. After the first month I did notice an improvement to my condition. Finally, something that's working. I even stopped taking Somac. Don't exactly want to become dependent on medication. Two months later a little better. Three months later, still have problems, but semi-tolerable. Four months later, still have problems, nausea, bad pain where I needed to lie down, but still living day to day and working. Five months later, I started to give up. This wasn't going anywhere and it was super expensive.
The Next Year
This is where it really went wrong. The nausea did die down a bit, but then it came back full throttle. I guess my body just finally gave up on me and could no longer cope. It was a hurdle just to get out of bed every morning. The acupuncture and herbal medicine were no longer working. On top of everything I was required to travel to the Gold Coast, Tasmania and Bendigo for work reasons, but I just couldn't. So I had to pull out of my work commitments. That can never look good. I decided maybe working part time might help, but by then it was too late. I was losing even more weight, I felt weak, fatigued and thought I was about to pass out at any time. I had to take dramatic action. I could no longer function and had to take more time off work. I came to the realisation that I could not function and perform at work not until I resolved my condition. Once again my boss was super nice and granted for me to take a year off. Phew. One less thing to stress about.
Doctors, Doctors and More Doctors
Boy, I can't tell you how many times I went to see doctors. I believe I would see some sort of doctor about three times a week. I went to a different GP because he was closer in proximity to my home and immediately he referred me to a different gastroenterologist. Luckily my boyfriend's mum is also a GP and wanted to monitor my condition so she stayed in contact with the gastroenterologist. The specialist decided that I should have a colonoscopy performed, but before that get a fructose and lactose intolerance check and to see a dietitian. Whilst this was happening it was suggested that I go see a psychologist to assist with relaxing my nerves in hopes that the abdominal pain and nausea would reduce. In addition, another GP got involved, my boyfriend's mum's colleague, and assisted with the monitoring of my condition. I also had a number of blood tests, ultra sounds, x-rays and other tests. Wow, my health team was growing by the minute. Got to say, I can't complain. The fact that I had so many people trying to help me really did lift my spirits. I didn't have to pay too much either.
For those in Australia, if you are low income earning and need to see a psychologist, the government have provided the ATAPS program. This means they will pay for the consultations, and you will be roughly $20 out of pocket. To apply for this you need to get your doctor to fill out a form and provide it to the psychologist.
For those in Australia, if you need to see a dietitian you can get your doctor to fill out a health care plan, and medicare will pay for the first six consultations with the dietitian.
Some specialists also allow for bulk billing (medicare benefits). Your doctor will need to assist you with this.
Not sure about other countries. I can only assume that private insurance is the way to go for some.
After a couple of months of seeing doctor after doctor I found out that I did not have a lactose intolerance and only a small fructose intolerance, no blood abnormalities or other issues. The specialist requested that I see him after these tests so a colonoscopy could be performed. However, when I attempted to call him I found out that he went on holiday and decided not to tell me. So here I am, still suffering heavily for two months, seeing doctor after doctor, and the specialist goes on holiday. Let's just say that I was not very impressed and neither was my boyfriend's mum. She wanted me to see another gastroenterologist that she greatly admires and trusts. Surprisingly I didn't need to wait for two months to see this specialist. I only waited three days. All I can say is thank you so much boyfriend's mum! Yes, that's right, I am not using names.
Path to Recovery
So I see the third and hopefully final gastroenterologist and immediately when I see him I felt as though I was in safe hands. He seemed to know exactly what I was going through. It was as if he had seen this a million times. He diagnosed me to have Post-Infection Irritable Bowl Syndrome (PI-IBS). Now, other doctors did mention that I may have IBS, however, they did not provide or prescribe anything for relief. Not only did this gastroenterologist diagnose my condition, but he also explained the symptoms, decided that a colonoscopy would not find anything and only create stress for my body, and provided an action plan for my recovery. He also referred me to a dietitian that specialises in IBS.
So now it has been roughly three weeks since I saw the gastroenterologist and this is the action plan.
- Take one vitamin D in the morning and one in the evening. Vitamin D naturally reduces inflammation. Inflammation in the gut can cause a lot of pain.
- Take ENDEP every night before bed. ENDEP 10mg is a mild prescription anti-depressant. The idea is to calm down the nerves around the gut to reduce abdominal pain.
- Take VSL 3 every day with Activia yogurt. VSL 3 is a strong probiotic with 450 billion good bacteria. The idea here is to re-balance the flora in the gut.
- With the assistance of the dietitian follow the FODMAP diet. FODMAP stands for Fermentable Oligosaccharides, Disaccharides, Monosaccharides and Polyols. Apparently this diet has been proven to assist those with IBS. It basically means reduce eating foods with Fructans (e.g. legumes, garlic and onions), Lactose (e.g. milk) and Fructose (e.g. apples and pears). Other foods containing FODMAPS include honey, wheat, corn syrup, wheat, artificial sweeteners and inulin. The idea is to follow this diet for two to three months and then reintroduce foods to see if it triggers abdominal upset.
So here I am, three weeks on this action plan. I started the low FODMAP diet just a week ago. So far the nausea has seemed to nearly disappear. Before this action plan when I had my period the nausea would go up ten fold. This time when I got my period I didn't get any nausea. I used to have abdominal discomfort and pain all the time, and now I seem to have pain just in the evenings. I also quite often would have very sharp pain. It was so bad that I couldn't even move and would start to cry. I do not seem to be getting such bad pain anymore.
Having said the above I am also trying to take it easy. I'm not going out too much. Mainly staying at home playing the piano to help me to relax. I reckon this is helping too. A nice chilled hobby to distract my mind. I'm also trying to do a little exercise daily. This just consists of stretching, star jumps, reps and squats. When I believe I'm up for it I'll go on the treadmill. Not sure if I'm confident yet because I'm still getting pain everyday. I'm also still seeing the psychologist who is performing hypnotherapy on me weekly.
Another little secret, I'm taking a teaspoon of grinded carom seeds with a pinch of rock salt with water every day after lunch. Carom seeds naturally assist with digestion and reduces gas. Feel free to google. I also like to take it before going out somewhere.
I'm also drinking Sustegen everyday to try to keep my strength up and lots of water. It doesn't hurt to have ginger tea from time to time either. Ginger is a natural remedy for nausea and assists with digestion.
So overall, I guess so far so good. But still a while to go. Will keep you informed of my progress.
The Other Stuff
You would be wrong to think that after one and a half years of having abdominal pain and discomfort and nausea one would be all happy and chipper. I have had my lows, and I mean extreme lows. So if you have a friend with IBS, just keep in mind that it isn't as easy as you think. Best thing you can do is just keep trying to distract them from the condition and reassure them that they'll get better, even if you have to tell them every day.
Anyway, I really hope that some of the information provided helps others out there, and if you don't have any IBS problems then I hope at least this was a good read.
xoxo Shikz
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