A guide for Crohn’s and Colitis patients

My first time

My first real encounter with Crohn’s disease was in Peru, in a town called Cuzco.  

I was twenty years old and wanting to see the world. Perhaps it would be more correct to say that what I really wanted was to go out and have fun. It didn’t really matter to me in which country, or which language was being spoken around me. The main thing was that it should all be cheap and cool. It was after a two-month tour of Ecuador and Peru that we arrived in Cuzco. As a great devotee of sea and sun, I was by that stage pretty fed up with the mountains, the cold and the general air of inaction that prevailed up there.

But what could you do when, as the locals and the tourists unanimously claimed, you absolutely “had to see” Machu Picchu, that ancient Peruvian city built on a mountain.
Well, if you absolutely had to see it, well then, you had to see it.

So instead of travelling for half a day and escaping to Brazil as so many good people tend to do, we decided – our group of five Israelis – to spend the night in the field, as part of a two-day tour up the mountain.

The people responsible for organizing the expedition were from a Peruvian tour company, a fact which by this stage of my trip, should definitely have rung alarm bells. I had already had all kinds of dubious experiences with Peruvians during the previous month, in which the exactitude of any agreement was at the very least certain not to extend to details.

Our agreement with the company for this trip was that they would supply an English-speaking guide, food for the full two days, and a means of transport for the journey back, which was to include a bus trip down the mountain, a train journey, and yet another four-hour leg back to the city. And as for us? Well, all we were expected to do was come along and enjoy the view.

After checking a number of companies, undertaking some brief research among experienced tourists and doing some quick bargaining about prices, we set off. Already at our first get-together with the guide it was very clear that his English vocabulary did not comprise much more than the word “hello.” Also, the sight of his tiny bag which was meant to contain enough food to stave off the hunger of six people for the entire tour, did nothing to add to any sense of calm.

The trip began with a climb that was not especially difficult, and its route took in some very interesting sites. If only we’d remembered to bring along a translator or a English-Spanish dictionary, we might have understood why.

Because our amigo was carrying all the provisions by himself, and was making such an effort to explain the heritage of his land to us, at a certain point we stopped cutting him short in the midst of the explanations he was giving at every stop. We simply let him continue explaining various subjects that appeared – at least to him – to be very important. In this way he managed to stretch the excursion out over the entire day.

I, who have never been thought of as a big eater, feel the sensation of hunger relatively quickly (possibly because I don’t have any great reserves). Very soon thoughts of food were the only things that were going through my mind and my stomach.

I should point out that in the light of my bitter experience with Peruvians I did display a little responsibility, in that I had bought a few crackers and nuts just in case the culinary aspect of this trip would turn out to be somewhat less satisfactory than expected. Responsible or not – by midday, after a half a day of trekking, I found myself with an empty backpack and an even emptier stomach.

I came to the conclusion that if I wanted to reach the camp where we were due to spend the night – and even more importantly, to receive our evening meal – then I needed to calm myself down and not waste any more energy on our talented guide.

Our sublime lunch turned out to be a wing-and-a-half of chicken for each hiker – a morsel which on a normal day I wouldn’t even think of giving to my dog. But on that particular day – which was far from being normal – I was literally licking my fingers.

After another few hours that seemed to take an eternity, the evening meal finally materialized. By then I wasn’t interested in what was on the plate. Despite the threatening growls of my table companions about the somewhat suspicious look of the steak, I completely cleaned my plate. I did however refrain from asking for more.

I was a bit disappointed with myself because during the first two months of the trip I had been careful not eat any kind of meat out of fear of an undesirable response on the part of my stomach. It’s known, however, that it’s not just an army that marches on its stomach. Another full day of hiking awaited me on the ascent up the mountain, without any comprehensible guidance or explanation or break for lunch.

And there was evening and there was morning – the second day of hiking.

I woke in the morning with unfamiliar feelings in my stomach. If I hadn’t become knowledgeable about Crohn’s disease over the previous five years and the way it manifests with diarrhea, anemia and other symptoms, I would have said that it felt like a real pain.

I didn’t get too excited, and I walked to the place where up to that point I had solved all similar problems – the bathroom. And the more I sat and thought, and sat again, and thought again, I understood that there was nothing left of the steak of the night before – and that there was no movement down south. And at the same time, the pain was just getting worse. It was at that point that I understood that I had a problem: Here I was in the middle of nowhere with completely new sensations, and with a journey of at least a day ahead of me, before I could hope to reach any sign of civilization (Peruvian, perhaps, but still – civilization).

I couldn’t really depend on the guide for anything, and waiting for some rescue didn’t seem to me to be a prudent idea – and in any case it would probably arrive in the form of an exhausted donkey.

 I decided to try my luck at the summit of the mountain – after all how bad could it be?

The rest of the day was supposed to include a guided tour of a few hours in Machu Picchu , and after that would come the three-part journey back to Cuzco. In the early hours, after I had assessed the state of my health, I decided that the challenge was not too great, and that I should continue the journey. At the same time I didn’t feel it was necessary to update my friends. Uncalled-for pressure wouldn’t help anybody. It was enough that one tourist was stressed.

At that time, all I knew about Crohn’s disease was what I had experienced before – diarrhea and tiredness. That was enough for me – perhaps because I believed that there are things that it’s better not to know. What I did know was that the disease could cause adhesions of the bowel, something that would be characterized by a hard and swollen stomach, symptoms that I had already identified that day. Although I was really worried, I continued on the journey back – without any clue of what I would do when I eventually returned to the city.

The pain and the swelling, as well as the general sensation that the food was stuck, brought me to the conclusion that eating now would not be the best idea. I decided to drink a lot in the hope that that would get me through the day. During the journey to the lost city I felt all right, even though the pain was constantly growing. When we reached the ruins I rested on a rock while the guide delivered a long and learned explication of the place.

In the afternoon when we reached the large parking area for buses where the tourists had gathered I tried my luck again in the bathroom, but didn’t make any progress. At this point I started to feel under pressure, something that only made the pains in my stomach worse. The truth is I simply didn’t know what to do.

I convinced myself to calm down and continue – not that I had any choice. We boarded the bus after a period of preparation that seemed to last an eternity, and we descended the mountain on the road to the train station. At the foot of the mountain it turned out that the train would only arrive in a few hours, and considering the dump that we found ourselves in I felt that despite the feeling that I was going to explode at any moment the right thing to do would be to try and nap on the grass. The hours passed but the pain remained and even worsened, and as could be expected, the train was packed and the journey felt endless. The truth is, that in my state, every move took an eternity.

We arrived at the train station in the evening. The nearest city was at least a four-hour journey away. I was suffering from intolerable pain, and I had not eaten since six that morning. I sat down on a bench at the station, while all around me was the chaos, crush and noise of tired tourists and locals with goods and giant loads on their backs. As I sat I felt that this was it. I was not going to move from here. At this point, as I was sinking into self-pity. I tried not to panic when I was informed that no-one was waiting for us at the station, and that we would have to find another way to get back.

After another eternity or two that probably only took an hour, it was decided that we would get into some kind of communal taxi that could accommodate our whole group as well as an amount of locals who could have populated a medium-sized country. On the way my situation just got worse. At about ten at night, when there were still two hours to go on the journey, I felt that I could not carry on and I asked the driver to pull over. There, in the middle of nowhere, on the grass at the side of the road, and with the taxi full of tourists and Peruvians behind me, for the second time I made the acquaintance of something I hadn’t seen for a full day – the steak and its extras. For some very long moments I could not stop throwing up my entire soul. I thought I was dying, but to my sorrow, the gods of Crohn were not going to give up on me so quickly. After I stopped throwing up, I drank a little water, washed my face, and calmed down. I returned to the taxi and did my best to hold on till the end of the journey.

After two hours the driver stopped in the center of the city. I sat down on the sidewalk and said to my friends that I was not moving from there, and that they should call an ambulance. I remember the surprise on their faces. After all – I had not said anything all day, and had given no hint of my situation.  Since no-one had any idea how or even where to call an ambulance I was convinced to get into a taxi to go back to the hotel. When we got there, I didn’t even go up to the room. I vomited my soul up in the toilets in the lobby, and although I thought that I had already seen all the items on the menu of the glorious meal of steak, the vomit reflex proved me wrong.

The hotel owner called an ambulance which arrived a few minutes later, and it took me, accompanied by two friends, to the hospital, a kind of private clinic mainly for tourists.

Because I didn’t know exactly what I was suffering from, and because I didn’t know the names of the drugs that could relieve the problem, I was at the mercy of the Peruvian doctor.

The first stage of the program was to give me painkillers, something for which I could only be thankful. After that two doctors examined me: The first, a likeable gastroenterologist, explained to me that it was simply the progression of the disease, and that it was essential that we treat this current attack. (This was to be the last time I would see this doctor for reasons which would become clear afterwards.) In contrast to him, however, there was the second doctor, who claimed that because the pain was on the right side of the lower abdomen, it meant that I was in fact suffering from appendicitis. Because of the danger, according to him, of the appendix bursting, it was necessary to do an urgent operation. He even added that in a case like this it was dangerous to wait, and that there was no possibility of flying to another city because there was a real fear that the situation would worsen. (Just in case I was thinking of fleeing that night, God forbid.)

His words aroused my suspicions, especially since I was beginning to get used to the addictive relief of the painkillers. There wasn’t a lot of time to think. I was taken by one of the male nurses for an X-ray that required me to stand up – an exercise that didn’t exactly combine perfectly with the painkillers I had received not long before. The next thing I remembered was a guy I didn’t know trying to stabilize me, and then myself waking up in a bed. A period of time that seemed to me just seconds, had in fact lasted for about two hours of unconsciousness. It turned out that during this time the doctor from the first clinic had tried to get one of the girls I was touring with to sign an authorization for an operation to remove my appendix. Luckily for me she was in no hurry to sign. She had even called her mother who had once undergone a similar operation, and she had warned her not to sign anything.

When I woke up I didn’t have the faintest clue about the owner’s desire to operate on me so that he could earn as much money as possible from the insurance company. In retrospect it turned out that with my abdomen in an acute state, the operation could have seriously endangered me. During the night the “appendicitis doctor” came back to examine me. Fat and threatening, a man fleshy from feeding on a good few ripe appendixes for breakfast, and laden with rings and gold chains, the “doctor” pressured me to decide quickly: “We have to operate now. Time is running out.”

Although the pain had lessened a little, it was still strong, and my stomach was hard and swollen. What was I to do? The appendicitis doctor left me no choice. All that was left was the last thing that any tourist wants to do: To call his parents and to worry them to death.

In my case it was definitely time for a second opinion from my specialist attending doctor – dad.

I made the call home, and I was praying, out of a desire to prevent panic, that my dad would answer. Mom picked up.

I said “Mom...! How are things...? Is everything all right? Me…? Okay… well, the truth is… my stomach’s a little sore, I’m in hospital. There’s a doctor here who wants to take out my appendix. Here, speak to him.” I handed the phone to the doctor. My mother’s response was “Okay, so come home.” The minute the initial shock at home passed, I spoke to my father, and to the displeasure of the doctor it was decided that I would get through the night with antibiotics.

Two months later, in Israel, in discussions around the dinner table, it was explained to me that these had been critical hours. If it had been appendicitis, my condition would have deteriorated. If it had improved a little, then it would have been a flare-up of Crohn’s disease. As you can imagine, the pressure they felt at home during those hours had been enormous. By the morning my situation had improved. There were less stomach pains, and less swelling and hardness.

I reported this to the family in Israel, and the situation calmed down a little. It wasn’t like that with the appendicitis doctor and the owner of the clinic who continued with their “must operate urgently.” This time, though, they backed up their diagnosis with an ultrasound test.

Days went by, with the pain lessening from day to day. After a week during which I barely ate a thing, it was decided that my condition was good enough for me to be discharged with all the internal organs with which I had been admitted.

With some trepidation I boarded a plane bound for the main airport in Peru’s capital Lima , and from there I continued to the Israeli embassy. The flight passed without incident, and I met the embassy doctor at the central hospital. In an additional ultrasound test, it still wasn’t clear whether it was an inflammation of the appendix, or another complication of Crohn’s disease. At this point I decided to return to Israel, despite my original plan that had included another two months of touring.

After a conversation with my parents, in which they convinced me to continue touring (and for this I thank them from the bottom of my heart), I decided to give up on the mountains and the cold of Bolivia in favor of the sea and the heat of Brazil. I continued on a tour of surfing that included only good food and sporting activities, without the generous help of any drugs. My condition continued to improve wonderfully. By the time I had been back in Israel for two months, I had already put on about seven kilos more than my weight when I had left for my trip. With a disease like mine, we were talking about a kind of miracle, especially given the state that I had reached.

My first time was perfect proof of the real capacity of Crohn’s disease. I understood for the first time just how much my condition could deteriorate if I didn’t take care of my health. Perhaps even more importantly I learned that my body had the ability to heal itself, or at the very least, to bring about a marked improvement. Brazil, with the calm and relaxing atmosphere that it offered, the excellent food and sporting activities on the amazing beaches, had been the perfect setting for strengthening the body and calming the soul.

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