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Travel with Crohns – Trekking in the mountains of Albania with Crohns

Written by Paul Goodmaker on . Posted in Blog

Apart from volunteering last September in Thailand and Cambodia, my last challenge was the big one last year trekking in Peru to raise money for ForCrohns. In July I will be taking on another challenge raising money for the charity, climbing three peaks in Transylvania in three days. As I need to be as fit as possible for this I decided to take a holiday in Albania last week walking in the mountains in the north of the country. This is also part of my “mission” to travel to more places off the beaten track to see how easy (or difficult) it is to travel with Crohns Disease.

Albania has only really opened up to tourism in the last five years. I imagine that the south and the beach areas are more geared up for tourists than the area I was visiting in the north.

Flying via Vienna on aeroplanes with only two toilets at the rear of the plane was the first challenge. I always ask for an aisle seat but when the hostesses bring the refreshments tray down the aisle it is pretty difficult to access them without climbing over it, which they don’t allow! Arriving at the airport, I was picked up and joined a group of fifteen people I didn’t know for a drive of two hours in a minibus to the town of Shkodra, known as the capital of northern Albania. Straight away I explained to the guide that I may ask to stop on the way and of course, he had never heard of Crohns Disease and looked blank. I also took this opportunity to tell him what I could and couldn’t eat and what may happen if I ate something I shouldn’t.

The next morning we drove through stunning mountain scenery to the docks at Lake Koman where we took a ferry ride for two hours. This is described in the Bradt guide as “one of the world’s classic boat trips” and it did not disappoint. The journey took us through glassy emerald green waters through twists and turns of narrow waterways beneath stunning mountain peaks. There was a toilet on the ferry, which was a relief and although not the best, it was better than some that I have encountered around the world.
After another minibus journey we stopped for lunch and then commenced our first walk to break us in gently. We followed the path of the river, occasionally ascending and descending. Due to the excessive rain of the winter the river was full and we came to a bridge, which had been damaged by the weather. We needed to cross it so our intrepid guides found a tree trunk, which had fallen across the river and suggested that we walk across in single file. Some of us looked a bit dubious at the idea of this feat of balancing with a torrent of water below but with a makeshift branch “handrail” held by the two guides we all made it safely across the to the other side. No risk assessments in Albania!

I had been feeling quite well recently but my three monthly B12 injection was due in two weeks so my energy levels were not at their best for a trip of this kind and it was physically tougher than I had imagined. I also realised as we moved further northwards that we had left a hospital far behind us and the infrastructure suggested that it would not be easy to access one if needed. It made me remember my trip in Madagascar when I became ill and ended up on a drip attached to a coat hanger and my bed in a hotel room.

Over the next few days we trekked in the Valbona National Park in the north of the country. The temperature was slightly cooler in the mountains but still hot for walking and climbing. The scenery was spectacular and there was still a lot of snow on the peaks. On the third day we were to undertake our longest climb and needed horses and mules to carry our luggage. A few of us decided that we would like to ride over the pass so we hired some extra mules. This gave me an opportunity to enjoy the scenery without constantly looking down at my feet. The mule was sure footed but as we got higher we came to the snow and had to dismount. It was also too steep to continue on horseback and being on a mule on some of those edges was frankly terrifying. We reached a stretch of snow, which was being cleared by one of the horseman so that we had a six-inch path to traverse with a sheer drop below it. (See the photo!) The animals went first to make a track for us to follow. My heart was in my mouth as I went across, as the thought of any of us slipping down the mountain was not one to contemplate. How would we be rescued? No mountain rescue here! The view was amazing though when we finally reached the top.

We arrived at our destination after getting soaked by a downpour of rain, which always seemed to happen at the same time in the afternoon. This accommodation was fairly basic and I shared a room with three others. Twelve of us were sharing two toilets with showers so I felt a little anxious about this but asked the family who owned the accommodation if there was another toilet I could use in an emergency. They may have thought this request was a bit odd, but it was too difficult to explain, as my Albanian is limited to saying thank you.

The last day‘s half-day trek proved to be the hardest for me as we made an ascent in the direction of the Thore Pass and it was estimated that this would take us three hours. Three of the group opted to travel in the bus with the luggage and I have to admit to being tempted but I didn’t succumb! It was so hard and I found myself usually at the back of the group, as I was so slow. At one point I lost the rest of the party as I was somewhere in the middle and the people ahead of me had gone so far ahead that I couldn’t see them through the forest. I used my whistle on the rucksack and the guide came running through the trees as he thought it was an emergency. (Note to self, only use whistle when really necessary.) Half way up I really felt like giving up and had gripping pains in my stomach, which meant that I had to drop behind the group to use the “outdoor toilet”, something that I am well, practised at! One of the members of the group held my poles and waited for me. The fastest in the group did it in three hours and the remaining six of us managed it in three hours and fifteen minutes. The view, at the memorial of Edith Durham (known as “the Queen of the highlands” in respect of her support of the Albanian cause after World War One), was worth it as was the feeling of accomplishment.

As this was the last day we were then transported by minibus back to the city of Tirana where we were to end our journey with a walking tour of the city and a final meal together. This involved a four -hour minibus drive. The city of Tirana is the cultural, entertainment and political centre of Albania and home to a rapidly growing population of one million. (The total population stands at around just three million.) There are brightly painted apartment blocks, some remaining communist buildings, theatres, restaurants and bars in abundance. As a tourist it felt very safe and there was no hassle from anyone trying to sell you anything. In fact I don’t think we came across any other English people during the week.

What will stick in my mind about this trip is the hospitality and generosity of the Albanian people, the absolutely stunning scenery and the help and support from some members of the group who were all complete strangers at the beginning of the trip. There are now fifteen more people and two Explore guides who perhaps know more about Crohns Disease than they did a week ago (apart from the doctor who was a member of the group and on holiday). There were other people in the group dealing with their own physical and emotional challenges who did not manage to complete all of the climbs for one reason or another. Most of the group were supportive of each other and understanding of individual circumstances and I have found this to be the case when I travel, which gives me the confidence to do this. As always, I thank my lucky stars that I didn’t need hospital treatment and my emergency medical kit has returned with me intact this time! Fingers crossed for Transylvania.

I now have six weeks to increase my level of fitness before tackling the three peaks in Transylvania. I have so far raised almost £2000 and hope to exceed this amount before I go. Wish me luck!

DONATE HERE: http://www.justgiving.com/Joanna-O-Donoghue 

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Coping with Crohn’s in the more remote parts of the world

Written by Paul Goodmaker on . Posted in Blog

Jo is back with another tale from her amazing travels…

My last blog about travelling with Crohns told of my trek in Peru to raise money ForCrohns. I have just returned from another adventure, which involved voluntary work in Thailand and Cambodia. This was not for the purpose of raising funds but I would like to share the experience to show how it is possible to travel to remoter parts of the world and cope with the challenges it presents for us Crohns sufferers.

The trip involved voluntary work with elephants in Thailand and teaching in Cambodia. I flew directly to Bangkok to meet up with the rest of the group who came from all over the world. For the first time, I had opted to share a room with a stranger and had some anxieties about this with the obvious toilet issues. As soon as I met my roommate, I was completely up front about my Crohns and how this affects me. She was totally understanding and as luck would have it was also a pharmacist who carried a range of drugs, which were helpful to many of us in the group!

After two nights in Bangkok we headed north to Surin, a northern province of Thailand. This involved a long bus journey with no toilet facilities, something which always makes me anxious. I briefed the tour guide and said that I may have to ask the driver to pull over at short notice. As it happened this was not necessary and we had several stops on the way. I always carry supplies of toilet paper, wet wipes and hand gel, which is doubly important in a country like this where toilet paper is not automatically supplied, and the order of the day is often a squat toilet or a “squatty potty” as it was nicknamed. I often find these a bit of a challenge but over time have developed strong leg muscles for squatting and balancing. I’m not sure how people with dodgy knees manage in this situation?

Our accommodation at the elephant village was basic. There were no flushing toilets but there was a lot of water available for pouring into the toilets. The showers were also inside the toilets cubicle. Sometimes the water dried up and we made do with bowls of cold water to wash but by and large we had a good supply of water, albeit cold! Here I shared a room with three others and we had a mosquito net and fan covering two beds. This made it quite interesting in the middle of the night for the frequent toilet visits I have to make!

During the daytime we were working in the fields, cutting grass for the elephants, planting grass and other projects. The work was physically exhausting and the heat and humidity very draining. I made sure that I drank a lot of water and used electrolytes to keep hydrated. The toilet issue was fine in the situation as I could just disappear privately with my bag of essentials. In the homestay we were cooked for and this caused a slight problem, as there was not a great variety of food. I gave them the long list of foodstuffs I can’t have and generally ate vegetarian or chicken. The diet was a bit boring but I needed to play safe as we were in a pretty remote location. The time spent with the elephants was very special, particularly went we walked them to the river and washed them.

After this part of the project we headed to Cambodia, which involved another long bus journey, which was manageable. I was quite desperate as we crossed the border but people get used to me disappearing with very little notice. In Cambodia our accommodation was much better with Western style flushing toilets. I was expecting to teach in Cambodia but the schools were shut due to a national holiday so I found myself on a building project instead. I was a bit concerned about this because I am not physically strong and can get worn out easily.

I was also concerned about the availability of a toilet but was told that we could use one in a house nearby. This was a squat toilet in what appeared to be an empty building. Cambodians with little money do not use toilet paper so there was nowhere to put it. Usually there is a waste paper bin next to the toilet to dispose of paper as if it is put down the toilet it will block the system. Lots of cold water had to suffice, as I needed to use this toilet during the day. Luckily in the heat you dry off quickly!

The project involved pulling down a house, which the family of five had been living in at a very basic level and rebuilding it in three days. With the help of a contractor and a few locals we managed to do this, with the exception of the floor, which would be completed later. We used bamboo sticks and banana leaves, which had to be painstakingly stuck together with wire to make the sides of the house. The group clubbed together to equip the house with some basics, which included a mattress for the family to sleep on as they had been sleeping on the floor. Their faces when it was finished and their gratitude made the hard work worthwhile and put into perspective my worries about going to the toilet.

I spent a further week in Cambodia on my own which involved some long bus journeys but again I found this manageable. The country of Cambodia has such a troubled history and visiting the genocide museum and the Killing Fields was a humbling experience. Tourism is developing at a fast rate and this will no doubt bring many changes, not all of them good. However, something about the people and the experience stole my heart so I plan to return to do some further voluntary work in a school and feel sure that I will be able to take on this challenge without too much anxiety. Shout if you feel like joining me?!

If you would like to talk to Jo about this please make contact via the charity at [email protected].

 

DONATE HERE: http://www.justgiving.com/Joanna-O-Donoghue

 

We made it to Macchu Picchu for Crohns!

Written by Paul Goodmaker on . Posted in Blog

Read Jo’s story on how she overcame her Crohn’s to trek to Macchu Picchu in Peru with her daughter-in-law Lizzie…IMG_0353

The journey really began from the moment I signed up to trek with Charity Challenge to Macchu Picchu, with a year of fundraising ForCrohns and training to improve my general fitness and stamina. I was thrilled when Lizzie, my son’s girlfriend also signed up to come along. We worked hard to fund raise, helped by friends and family and had raised over £8,000 when we left with this sum steadily rising and standing at  £9051.76 at the time of writing.

When the day finally arrived we met up with some of our fellow trekkers at Heathrow. There was another member of the group with Crohns, Ryan, a young man who had been very ill since he was seven. Five months ago he had a reversal operation and had a colostomy bag fitted again, which would provide him with some challenges on the way although he generously said they might not be as great as mine!

After three flights via Bogata and Lima we arrived in Cusco on Saturday afternoon where we were to stay for two nights before starting the actual trek. There were eighteen in the group in total, nine Canadians and nine Brits of varying ages, shapes and sizes.  We immediately built up a rapport as we had a common purpose, raising money for our chosen charities and challenging our physical and emotional resilience.

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Our first challenge was to acclimate to the altitude, which affects people indiscriminately regardless of their age or level of fitness. The first afternoon we took a very slow walk around Cusco, which lies at 3,350 metres above sea level. The following day was warm and sunny and we had a three-hour acclimatisation walk in the hills above Cusco. At this point I was feeling confident as it all seemed pretty easy so far and my headache from the altitude was only slight. That evening we received a briefing from Dougie, our guide and given a bag to pack with essentials for the trip. Everyone appeared to be feeling bright and optimistic and looking forward to the challenge.

The next day we left at 6.30am and began with a bus journey through the Sacred Valley. The scenery was stunning but the winding road made us all feel nauseous and left us gasping at times as we appeared to teeter on the edge of sheer drops into the valley below. We stopped off at Lares on the way where we bought fruit and small gifts for the children we would encounter on the way. We would not be taking the traditional Inca trail but following a path little used by tourists. We stopped at some hot springs for lunch and then began our trek, starting with a steep 500-metre climb. The sun beat down on us and we were all in high spirits although not speaking much as we slowly climbed. That afternoon we had several hours to climb, eventually to 4000 metres and our first campsite at Cuncani.   Our guide instructed us to take very small steps and find our own pace and drink lots of water to help to adjust to the altitude and avoid the headaches. On this first day I felt very confident and was glad of the training I had undertaken and felt able to keep up a steady pace.

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From now on we had a back up team with cooks, a doctor, two additional guides and arrieros (mule men with their three mules). When we arrived at camp we were given sweet biscuits and tea to restore our sugar levels and we were given a bowl of warm water to wash in. Every day our tents were put up ready for us and taken down in the morning. Toilet facilities were basic but adequate.

The headaches had begun in earnest now that we were higher, a relentless beating in the head, accompanied by a slight feeling of nausea. Some people took Diamox but reported that it had some funny side effects so I resisted that.

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During the first night in camp the rain poured down on the tent all night and it was fairly cold. I had to make a several trips to the toilet in the night and the early morning. We woke early to prepare for the day and climbed into our waterproofs before setting off with the mules. As we left we saw some of the children who lived in the hills who ran to see us. We gave them fruit and small toys and they often gazed at us solemnly with their large brown eyes and wind burned faces, occasionally breaking into a smile or a giggle of delight at what they had been given.

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The rain dampened our spirits a bit and we began with a steep climb. Heads were thumping, we were getting wet and breathing heavily. One of the girls in the group had experienced a very bad night and had been given some oxygen. Ryan, the other Crohns sufferer was also feeling the effects of the altitude quite badly. We climbed steadily for two hours with the rain and mist becoming heavier. There was little conversation as people needed to conserve their energy. Ryan needed oxygen and had to rest and there was talk of him being taken down to a lower altitude to recover but after a rest he continued. I found myself drifting to the back and then began to experience those gripping stomach cramps, which inevitably lead to needing the toilet immediately. I told the guide at the back that I needed some privacy and climbed (too quickly) up an even steeper incline. After going to the toilet violently which was not a great experience I managed to scramble back down but felt very shaky. We needed to catch up with the others but I began to stumble and really needed time to recover. I decided to do the sensible thing and agreed to ride the mule to the top, which was about ten minutes further up.

We overtook the others and the mule scrambled across the rocks to the top. This should have been a breath-taking view of Lake Cruscrasa but it was shrouded in mist and it was freezing cold. My feet had gone numb because I hadn’t really been moving for ten minutes. A lone peasant woman had seen us coming and sat at the top with her handicrafts spread around her hoping for a sale. We were now at 4,200 metres. After lunch we climbed down slowly for several hours until we reached Wacahuasi, our campsite for the night, which was at 3,850 metres. The majority of us were in good spirits although several people had moments of feeling unwell and overwhelmed with emotion leading at times to a few tears being shed.

The next day was to prove to be the toughest for me. I needed the toilet a lot in the morning and felt shaky and exhausted. We were being hurried to get ready to leave the camp and I felt unable to leave the toilet, even though it was a makeshift one. I shed a few tears and felt myself begin to panic. The doctor was instantly on hand to calm me down and encouraged me to eat some porridge with lots of sugar. My head was pounding incessantly and I did not know how I was going to cope with a nine-hour trek. We were following a little used route through the Ranrayoc Valley.

We climbed and climbed and climbed. Again I found myself slipping towards the back with four of the other girls. We slipped and swore and breathed heavily, stopping every now and again to regain our breath and give words of encouragement to each other. At the very top we had reached 4400 metres and could see the lunch tent way down beneath us. It was freezing cold and we were being lashed by the wind and rain. As we began our ascent downwards I felt myself stumbling and swaying as if I was drunk. When I finally reached the tent Dougie took my bag pack from me and urged me to drink but inevitably I needed the toilet again. When I returned, I fell sideways on top of someone and was hastily given three cups of water filled with sugar. I was shaking violently due to low blood sugar and the doctor took my blood pressure, which was normal. After eating some food and restoring my blood sugar levels, I felt ready to face the afternoon. It took us several hours to descend to where a bus was waiting for us and I had to take several toilet stops on the way which meant that I was at the back again, which psychologically is not a good place to be.

The bus took us to the town of Ollantaytambo where the train leaves to take people to the various starting points to get to Macchu Pichu. Our last campsite was just outside the town and had a flushing toilet and cold showers. When we arrived it was dark and we had to organise our tents and some of our belongings, which were to be taken back to Cusco. I started to sneeze and felt my throat constrict. I went to the toilet and looked in the mirror  (a rare thing to have at a campsite but this final one had a few more facilities!) to see that my face and eyes were swollen and it looked as if I was having an allergic reaction to something, although I was later told that this could be due to the altitude. I took a couple of puffs on my inhaler and at 7pm decided to call it a day, crawling into my sleeping bag and deciding to miss dinner in favour of getting some sleep. We had to get up at 4am the next morning to be ready to get to the train station to catch the train.

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In the morning after some sleep I felt a little better. We caught the train early and set off for our final goal, to reach Macchu Pichu. We disembarked from the train at Gate 106, which would take us up to Winayhuayha and then up to Macchu Pichu. The heavy rain had rendered gate 104, with the promised 3,000 steps impassable. We were not to be disappointed, however, as we still had several hours of climbing to do. This was my best day! We had dropped in altitude so the headache had gone and I felt that this is what I had trained so hard for.  I kept up with the others, although obviously not the super fit teenagers. Lizzie and Ryan were ahead of me and I occasionally caught up with them and someone commented that I was “flying” today. We stopped for a brief sandwich lunch and again to look at the ruins of Winayhuayha and then the final climb upwards toward the Sun Gate.  By the time we reached the top we had apparently climbed 109 floors and taken 6,316 steps. A few very steep steps led up through the Sun Gate and our first glimpse of Macchu Picchu. It was shrouded in mist and every bit as inspiring and magical as people describe. The sun came out for us as we stood at the top and just gazed down at the site. As a group we had achieved our goal, even though some of us had had a harder time of it than others. We took some time to catch our breath and take photos and then began a steady climb down. It felt odd being amongst so many people after just being in our group and seeing no one except for the local peasant communities.

As we got nearer to the site it began to rain heavily. We needed to catch a bus down to Agua Calientes where we were staying for one night. We queued for over an hour in the unforgiving, pouring rain and then endured another butt clenching bus ride, careering around hairpin bends until we reached the town. We were soaked through to our underwear and had to dry our clothes with a hairdryer, but bliss we had a hot shower and a flushing toilet. That evening I downed a few Pisco Sours to celebrate.

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The next day we had an opportunity to explore Macchu Picchu at a slightly more leisurely pace in our tourist clothes, thankful not to have to wear our heavy walking boots and stinky socks. In the afternoon we caught the train back to Ollantaytambo and then a bus onwards to Cusco where we were to have a final celebratory meal and say our goodbyes to the group as Lizzie and I were staying on for a few days visiting Puno and Lake Titicaca.

This had been described as a tough trek and indeed it was. The altitude and weather conditions made it more difficult than I had anticipated. I felt an overwhelming sense of exhaustion at times but this culminated in a real high at the end, having achieved a personal challenge and raised a lot of money ForCrohns. The slogan on our tee shirts proclaimed “We did it for Crohns” but I also “did it with Crohns.” I was the oldest person in the group. I hoped to show that despite the difficulties my illness caused me on the trip sometimes, these could be overcome.

My aim is to persuade a group of people with Crohns to accompany me on my next challenge, maybe next year or the year after. A group of fifteen of us could raise a huge amount of money and help to spread awareness and a belief that all things are possible. Watch this space!

If you would like to talk to me about this please make contact via the charity at [email protected].

DONATE HERE: http://www.justgiving.com/Joanna-O-Donoghue

 

Preparations for Charity Trek to Machu Picchu with Crohns

Written by Paul Goodmaker on . Posted in Blog

1aDONATE HERE: http://www.justgiving.com/Joanna-O-Donoghue

Just over a year ago I had the idea of raising money ForCrohns and at the same time taking on a personal challenge to prove to myself and others, that even with Crohns and everything that goes with it, anything is possible. I contacted Charity Challenge and signed up to a charity trek in Peru. The challenge I chose was trekking in the Lares Valley to Machu Picchu and this was described as a “tough” challenge, trekking at high altitude for long days and camping out in pretty cold temperatures. On one of the days we have to climb 3,000 steps. I hoped to get a few other Crohns sufferers to come along but despite my persuasive powers, I was unsuccessful in this. However my son’s girlfriend, Lizzie decided to come along to support me and raise as much money as possible for the charity. I have learned recently that there are at last two other people on the trek who are raising money for bowel disease.

2My consultant was not over the moon at my plans and insisted on (another) colonoscopy to check the position with regard to my Crohns.  Unfortunately the camera was unable to pass into my small bowel (ouch!!) so we still don’t know the current position, except that I must be really careful what I eat up there miles from a hospital. Fingers firmly crossed.

So began the task of raising as much money as we could, with £3,700 being the minimum required to take part in the challenge. We set up our Justgiving pages and friends and family began to donate. Despite their incredible generosity we also needed to set up some fundraising events. This has certainly been a learning curve and we have had some setbacks and some incredible successes along the way. What has been incredible is the amazing generosity of family and friends for their support and time but also from random strangers who often had a family member or friend suffering with this illness and wanted to donate.  We have been able to talk to a wide range of people to raise awareness of Crohns Disease and ForCrohns and have had some local radio coverage to do the same.

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Music events have featured in our fundraising and we have held events in Norfolk and London featuring a wide range of music, in the main due to my son’s involvement in the music business.  This video is from Music forCrohns at The Troubadour in London in February 2017.

All of these musicians have performed for no cost. I have held two auctions with prizes donated from local businesses, including generous donations from a well-known Norfolk artist and photographer.  We have held sales in London and Norfolk , a quiz night and I have shaken a bucket in Tesco. That last one was not such a successful idea in terms of raising money but I got to talk to a lot of people about Crohns. We have learned what works and what doesn’t but feel we have been pretty successful overall. At the point of writing this we have raised over £8,000. We are still continuing to raise money with just 31 days to go so if you would like to donate a small amount or share this blog, then please do! Justgiving details below.

DONATE HERE: http://www.justgiving.com/Joanna-O-Donoghue

Alongside our fundraising efforts we have to have a good level of fitness so I am spending hours walking and on the treadmill in the gym trying to build up my stamina and skinny legs! We fly to Cusco on April 6th and after a very short time acclimatizing to the altitude we will set off. We hope to post photos and a blog about our challenge. Watch this space and wish us luck!!!

Fighting back after my miracle baby – Crohns blog – Having children when you have Crohn’s

Written by Paul Goodmaker on . Posted in Blog

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17th September 2015

I was diagnosed with Crohns disease whilst I was at university. I had bad tummy cramps and diarrhea for weeks. I had bad legs with big lumps (Erythema nodosum), which were really painful. It was horrible and I was going to the toilet 30+ times a day. I lost about 2 stone in weight and had no energy at all. I could barely eat, as every time I did I had to go to the toilet. I couldn’t sit as my bottom end hurt so much. I just slept and led about. I had fevers and blood when I went to the toilet.karen

I was one of the more fortunate Crohns patients as I was diagnosed quickly as I had the lumps on my legs and after having a Colonoscopy in Brighton Hospital between Christmas 2005 and the new year. I was then admitted and diagnosed with having Crohns Colitis meaning that it was predominantly at the bottom end of my colon (large bowel) and rectum. This meant I had inflammation and ulcers on the lining of my bowel and rectum. I was also fortunate as intravenous steroids calmed the inflammation down whilst I was in hospital which enabled me to go home with oral medication which kept the symptoms at bay for a while.

Since then I have had numerous flare ups, different medications (oral, injections and intravenous), hospital stays, investigations and operations. But medications just wouldn’t work for me. After numerous other options and resting my bowel for over a year it still didn’t work and the Crohns was still active. I have now had my whole large bowel and rectum removed. I have an ileostomy bag (which I have learnt to love). I am proud of it.

In March this year I went into hospital with a blockage in my small bowel. I was 35 Weeks pregnant and I got so ill and the blockage wouldn’t clear. They decided to do a Caesarian to see if that would clear the blockage and Megan was born 5 weeks early and she was absolutely fine, healthy and gorgeous. b62df75f-eaad-4a1b-a08f-4385575190e2

Unfortunately it didn’t make it any better and I got so ill my bowel died and I had to have over half my small intestines (small bowel) removed. It was said I was as ill as anyone could get! I had lots of other complications and spent 26 days in intensive care. I can’t remember 17 of those days as I was taken in and out of consciousness. I had a tracheostomy, amongst other things to make me better. When I woke up I couldn’t move my legs as where I had been led in one place for so long I had so much muscle wastage. Like with building up my running last year I built up my movements, muscles and walking day by day, doing that little bit more every time and making myself do it. It felt like I’d never get out of that hospital! The stairs were harder to climb than mountains I’ve climbed in the past.

On 20th September 2015 I’ll be walking the 10k forCrohns. But I feel that walking 10k is my marathon now and I hope that next year I will be writing this about running!

I can and I will!!!!!!!!!

It is going to be a very emotional time crossing that line with my husband Ashley and daughter Megan with me.

Thank you for reading my story and it would be very much appreciated if you would be so kind to sponsor us to raise money for this amazing charity to find a cure for Crohns, a disease which caused me to have the blockage in the first place! .

To celebrate the launch of Book forCrohns, we’ve launched Blog forCrohns, featuring blogs from some of the best Crohn’s bloggers on the web as well as volunteers from the forCrohns committee. We’d love you to contribute, find out more here.

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A life without pineapple – Crohn’s Blog – Diet & Nutrition

Written by Paul Goodmaker on . Posted in Blog

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27th August 2015

Diet and nutrition have played a major role in my life since I was first diagnosed with Crohn’s disease in May 2006. I became aware of the foods that I should avoid to prevent a crohn’s flare up after carrying out research on the internet soon after my diagnosis. My consultant also gave me an indication of the type of foods I should avoid to prevent me from becoming unwell, for example sweetcorn, brassica vegetables and fruits which are hard for Crohn’s patients to digest. Therefore, I have avoided eating cabbage, cauliflower, peppers, sprouts, pineapple and grapefruit for the last 9 years. I have eaten sweetcorn on many occasions and this hasn’t really affected my symptoms which indicates that every Crohn’s patient differs in terms of the foods he or she can eat.

Additionally, I have avoided eating hot and spicy foods such as strong curries or Mexican food since my diagnosis as these could play havoc with my stomach and lead to a number of trips to the bathroom! These types of foods, as well as the fruits and vegetables I have already mentioned, used to affect my stomach before my diagnosis. Therefore, I might have been suffering from Crohn’s disease for a period of time without realising it.

I have also recently discovered that fatty foods such as meat or fried foods can have a significant effect on my symptoms. Therefore, I try to avoid this type of food as I know what kind of impact it could have on my stomach. Monosodium glutamate (MSG) is a flavour enhancer I actively try to avoid, especially in Chinese food, as this has led to me suffering from severe stomach aches.

All of the foods I try to avoid can cause diarrhea and gas which is another main reason why I actively avoid them.

I find it very frustrating avoiding foods when eating in restaurants or at other people’s houses. This is something I have become accustomed to since my diagnosis. I always ask the waiting staff about the ingredients if I’m interested in a certain dish in a restaurant to ensure that my stomach won’t have any adverse reactions. On most occasions, the food doesn’t affect me but this isn’t always the case. Most of my friends and family know about my condition and which foods I can or can’t eat but it can sometimes annoy me when I have to inform people of my dietary needs if they aren’t aware of them.

In general, I eat very healthily and ensure that I eat plenty of fruit and vegetables on a regular basis. Additionally, I eat lots of oily fish, chicken, dairy products such as eggs, milk and yoghurts, cereals, nuts, pasta and other healthy foods on a daily basis. These foods help ease my Crohn’s symptoms and don’t give me any major problems.

It is recommended that Crohn’s patients try to avoid fizzy drinks like Coke or lemonade as these could exacerbate symptoms due to carbonation and gas. It is also recommended that fruit juices should be avoided due to the impact of natural and added high-fructose corn syrups , but I do partake of these drinks even though I’m aware that they might upset my stomach . However, they don’t really have much of an impact and I can withstand the after affects if get any as I enjoy them so much. I also occasionally drink alcohol even though it is advised that crohn’s patients should avoid drinking it. Once again, alcohol doesn’t really have much of an impact on my symptoms but I think this will depend on the individual patient.

Water is a very important beverage and I constantly drink it throughout the day to keep me hydrated and to increase the fluid levels in my system and to keep my Crohn’s symptoms at bay.

Thanks to Jonathan Marks for this Crohns blog post. Jonathan is 41 years old and lives in Leeds with his wife Sara. Jonathan enjoys travelling in the UK and abroad, playing tennis and badminton, the world of science fiction and fantasy, attending community groups and creative writing. Jonathan is keen to start sharing his Crohn’s experiences and hopes to launch his own blog shortly.

To celebrate the launch of Book forCrohns, we’ve launched Blog forCrohns, featuring blogs from some of the best Crohn’s bloggers on the web as well as volunteers from the forCrohns committee. We’d love you to contribute, find out more here.

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Hope in the middle of Madagascar – Crohn’s Blog – Everyday Life

Written by Paul Goodmaker on . Posted in Blog

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Join Jo on a Trek to Machu Picchu to raise funds forCrohns. Find out more here

26th August 2015

Jo O'Donoghue's Blog forCrohns

Jo O’Donoghue’s Blog forCrohns

My last blog told of my battle with Crohns for the last thirty two years and how I have managed this condition in general and while travelling the world, something I have been doing more of in recent years. I mentioned keeping my fingers firmly crossed when travelling in some of the more remote locations I have visited just in case I needed a hospital! After a successful visit to the Galapagos Islands, about as remote as you can get, earlier in the year I was feeling confident about my trip to Madagascar, a country I knew little about except for its population of lemurs.

The trip began well. I was careful about what I ate and didn’t touch the extremely chewy zebu meat, which appeared on every menu. We wound our way south on winding roads pitted with potholes through some of the most remote locations and one night staying in the most basic of accommodation without the luxury of a flushing sit down loo or running water.

Eventually we ended up in the Isalo National Park in an unexpectedly luxurious hotel built into the rock. That night I ordered tuna fish as fish is always a safe bet and I was tired of omelette. My first bite revealed that it was very tough but I swallowed a piece and then a second piece, which was also very chewy so I abandoned the rest of my meal.

At about 2am the next morning I awoke with a sense of dread. I could feel those gripping pains coming in waves, which begin slowly and develop over a few hours into a level of pain, which can only be relieved by morphine and is usually accompanied by violent sickness leading to dehydration. This was not looking good. I awoke my travelling companion and oldest friend, Sarah and told her what was happening. We knew that we were miles from a hospital in a country with very poor road links. It had taken days to get here from the capital Antananarivo, where we imagined there may be a hospital. We discussed the fact that we probably needed an aircraft but things became a bit blurred after this as the pains inevitably began to increase in intensity. Sarah went to wake the tour leader at around 5am and awoke the manager of the hotel who called a doctor. He arrived almost two hours later as he had quite a distance to travel. He was impeccably dressed in a white shirt with clean cuffs, which somehow seemed a comfort as everything in this country seemed to be covered with dirt and dust. He was carrying his doctor’s bag from which emerged a variety of things. First of all he put up a saline drip, attaching it to a coat hanger and using some plastic gloves, he tied it to the top of my bed. He plunged a needle into my hand and began to administer pain killing and anti sickness drugs. Our conversation was all in French and mine is limited to what I learned in school decades ago. This doctor returned twice more that day to check on me and give me more pain relief and anti-spasmodic drugs. His final bill totalled the equivalent of ninety euros and I would gladly have paid that more than ten times over. The tour left without us and I was left to recuperate in the hotel. The staff could not have been kinder and the manager gave me 30 per cent off the bill.

I incurred a few more expenses before I was able to re-join the trip three days later and have yet to see whether my insurance will cover this. The question which I kept asking myself, was whether this had taught me a lesson? Should I curtail my travels and restrict myself to places with more accessible medical care? The answer is probably no! The care I received in this country, which is one of the poorest in the world, exceeded my wildest dreams. I guess I was lucky to be in such a comfortable hotel and that a doctor reached me and I do acknowledge my good fortune in that respect. I feel that someone must be watching over me and I am not religious in any sense but I thank my lucky stars that this turned out so well. I just wanted to share this to give others with Crohns Disease who may be afraid to travel, some hope and encouragement that the outcome can be good. My guide and travelling companions now have a lot more knowledge about Crohns than they did before and that too can only be good!

Join Jo on a Trek to Machu Picchu to raise funds forCrohns. Find out more here

Thanks to Jo O’Donoghue for this Crohns blog post. Jo is a private educafinal_book_frontcovertion consultant who has worked for forty years with children with special educational needs, predominantly those with challenging behaviour. She has two grown up children, two grandchildren and is a respite and emergency foster carer. She was diagnosed with Crohn’s in her twenties and tells of how Crohn’s has affected her life. She currently divides her time between work and travelling the world!

To celebrate the launch of Book forCrohns we’ve launched Blog forCrohns, featuring blogs from some of the best Crohn’s bloggers on the web as well as volunteers from the forCrohns committee. We have a variety of different topics throughout 2015 and we’d love you to contribute. Find out more here.

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Living with Crohn’s Disease, my invisible friend – Crohns Blog – Everyday life

Written by Paul Goodmaker on . Posted in Blog

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Join Jo on a Trek to Machu Picchu in 2017 to raise funds forCrohns. Find out more here

Jo O'Donoghue's Blog forCrohns

Jo O’Donoghue’s Blog forCrohns

I was diagnosed with Crohn’s Disease in 1983, having been ill for several years prior to this, although no one seemed to know what was wrong with me. I was in my twenties, a single parent of a two year old and a full time teaching job. It was only when I literally collapsed and got rushed into hospital that my illness was discovered. When the doctor confirmed the diagnosis I had no idea what it was or that this illness would define the rest of my life in some shape or form.

What followed were several months of hospitalization, drug treatment and finally a resection of a large part of my small bowel. When I returned from hospital I couldn’t even pick up my little girl or return to work for some time. Since that time, not a day has passed when I haven’t thought about my Crohn’s, my invisible “friend”. I have been in hospital so many times that I have lost count, usually admitted in severe pain with suspected blockages. I have had steroids, X-rays, morphine, drips, and cameras down my throat and up my bottom. I was prescribed with Azathioprine a couple of years ago and it just about destroyed my immune system. I now just take folic acid and have B12 injections every three months. I have tried all manner of diets, vegetarian, dairy free, you name it, I’ve tried it and there is a long list of foodstuffs that can put me in hospital within hours. For someone with a passion for food, that has been quite difficult!

That’s the dreary part over. Now let’s, “Skip to the good bit” in the words of the Rizzle Kicks. I made up my mind early on that I was going to fight this illness and not let it define my life in a wholly negative way. I shout about it from the rooftops. I make announcements like an alcoholic, “I’m Jo and I’ve got Crohn’s!” When people I don’t know try to tell me “just try that (food), you might like it ”or question why I am in the queue for the disabled toilets, I give them the full facts. People need to know about this illness and how it affects so many people who are sometimes embarrassed to talk about it. I have had fantastically supportive family, friends, and employers. People will urge me to ring them in the middle of the night if I need a lift to hospital and can’t get an ambulance quickly enough. They don’t even mind if I am sick in their glove compartment although it is hard for them when they see me writhing in agony and throwing up the inside of my stomach lining.

I’ve had a successful career and have had two wonderful children who are now grown up. The second child, my son, seemed something of a miracle as I had half of my reproductive organs removed along with my bowel in that first operation. I imagined my stomach splitting open at the stitch line as my pregnancy progressed. (No keyhole surgery in the eighties.) I have some great scars which I show people indiscriminately!

In recent years I decided to travel the world despite cautionary tales. I have visited Australia, South East Asia, North, Central and South America and South Africa, to name but a few. I spent two summers volunteering with street children in Costa Rica and Ecuador. I have been in the jungle, the rain forest, up mountains and on remote islands. I have been zip wiring, white water rafting and hang gliding. My fingers are always firmly crossed because if I am not near a hospital I could be in serious trouble, not to mention severe pain. People often ask me how do I do it and aren’t I just a little bit scared? Of course I am but that doesn’t stop me. I carry a doctor’s letter translated into the language of the country I am visiting, some medication and masses of toilet roll and hand sanitizer. Sometimes I have moments of panic but I always tell people I am travelling with or random people if I need to jump to the front of a toilet queue or stop a bus and go behind a bush. People don’t always “get it”, particularly the immediacy of the situation when you need the loo but they are usually sympathetic and helpful.

As I write, I am packing for my next trip to the Galapagos next week and in the summer I am heading to Madagascar. After all, you’re only here once and life is short so my mantra is to make the most of every moment. Thank you Crohn’s, you may have just made me truly appreciate that fact!!

Join Jo on a Trek to Machu Picchu in 2017 to raise funds forCrohns. Find out more here

 

Thanks to Jo O’Donoghue for this Crohns blog post on Living with Crohn’s. Jo is a private educafinal_book_frontcovertion consultant who has worked for forty years with children with special educational needs, predominantly those with challenging behaviour. She has two grown up children, two grandchildren and is a respite and emergency foster carer. She was diagnosed with Crohn’s in her twenties and tells of how Crohn’s has affected her life. She currently divides her time between work and travelling the world!

To celebrate the launch of Book forCrohns in May 2015 (register here to get an email as soon as it is available), we’ve launched Blog forCrohns, featuring blogs from some of the best Crohn’s bloggers on the web as well as volunteers from the forCrohns committee. We have a variety od different topics throughout 2015 and we’d love you to contribute. Find out more here.

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Having surgery is not the end, it’s a new beginning – Crohns Blog – Having Surgery

Written by Paul Goodmaker on . Posted in Blog

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23rd March 2015

It’s now over 4 years since I had life-changing surgery for Crohn’s Disease. Looking back at that time I tend to see it all now with somewhat rose-tinted specs. I mainly remember the funny stories and daft things I said under anaesthesia, because these are generally the tales I tell people about. They always seem to go down better than the gory details. Can’t for the life of me think why…

Around the start of 2011 as a new year had begun, for me it seemed like the end rather than a new beginning. I was utterly hopeless, I’d been in so much pain for so long and the idea that I would have to go through horrific surgery (yes I dramatize EVERYTHING) with the possibility of months of recovery ahead of me, a potential colostomy bag and a life-long scar was almost too much to bear.

By the time the date of my operation rolled round my condition had escalated and I had become seriously ill. I had, within the 6months prior, rapidly gone downhill. I was not eating (it wasn’t physically possible) I was in gut-wrenching agony every day (no form of pain relief could touch it), I couldn’t sleep or walk further than a few steps without almost passing out, and most vitally; I’d mentally given up.

The pain of my disease was consistent and unbearable. It frequently reduced me to tears. It was becoming almost impossible to hide the fact that I felt that something was slowly but determinedly ripping my insides out from the inside. I gradually came round to the idea that not only was this operation essential; it may actually serve to make me feel better. This seemed such an unlikely resolution that I chose not to focus on it and instead worried intensely how I would cope with a potential colostomy bag and how brutally unattractive I’d be with a massive scar down my front. (I didn’t at any point say I was thinking logically.)

I really needn’t have worried; on either front. I didn’t end up with a colostomy and my scar hasn’t put my partner off the idea of jumping my bones on a regular basis no more than perhaps having my head and limbs removed might. (That probably wouldn’t either mind you). I’ve come to accept my scarring as a part of my body now, much like my long and decidedly repulsive E.T style toe. Although the toe-acceptance took much longer than 4years.

I often mentally relay this story to remind myself that giving up never solved anything. I have felt low due to my illness since, and I’m sure I will again, but accepting those feelings is where I will always fall down. And stay down. Myself, and anyone else in my similarly diseased boat must remember never to give up hope. It may feel that you are fighting a losing battle with your body but try not to think of it as a fight – that way you are constantly setting yourself up for a fall. Having surgery is not the end; it should be a new beginning. I wish I’d looked upon it that way before I went under the knife, so I would encourage anyone facing a similar situation to try their best to see it as a new start. Crohn’s is an incurable disease – it will always have the upper hand, but you have a functioning mind and if you choose to use it positively it will always win out.

Thanks to Kathleen Nicholls for this Crohns blog post. Kathleen is on Twitter (@kathfantastic), has her own blog on Facebook as well as at http://crohnologicalorder.blogspot.co.uk/ and has her very own website http://kathfantastic.weebly.com where you can find more about her, further inspiring blog posts and other great content.

To celebrate the forthcoming launch of Book forCrohns, we’ve launched Blog forCrohns, featuring blogs from some of the best Crohn’s bloggers on the web as well as volunteers from the forCrohns committee. We have a variety od different topics throughout 2015 and we’d love you to contribute. Find out more here.

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A musician’s frank and candid experience on living with Crohn’s – Crohns Blog – Everyday life

Written by Paul Goodmaker on . Posted in Blog

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10th  March 2015

I am a 28 year-old self-employed musician, living with Crohn’s since being diagnosed at aged 10. I’ll be quite frank and candid, as this is how I would wish anyone else to be who was telling me about their experience.

To set the scene, here is a recent medical potted history…Surgery in July 2011 to remove large section of bowel and I was left with temporary ileostomy. In 2012 I had some abnormal blood results and other unusual symptoms, leading to a couple of hospital stays and an inconclusive diagnosis of abdominal TB. 2013 was a relatively smooth year. I did develop a hernia and a prolapse of my stoma, but this didn’t prevent me from starting to take on small amounts of work, though it was difficult as my job can involve some awkward physical activity. 2014 saw no improvements and some more unusual test results so my consultant has gone back to the drawing board and done a broad range of new investigations, including surgery in October 2014 to take biopsies from various places. I did opt to have my hernia replaced at the same time, which although made it a bigger procedure, meant getting three jobs done in one trip and preventing multiple surgeries! (Glass half-full and all that!) It’s now January 2015 and I am almost at the end of this plethora of investigations and will hopefully end up with a renewed positivity and plan of attack.

I play and teach the drums for my living. (I know! Of all the instruments I could have chosen as someone who will always tire more easily from physical work – I could have made a wiser career choice) My life to date and particularly in recent years can best be summed up as steady relapses with periods of stability in between but never achieving remission. In terms of everyday living, it can be very difficult for any of us to manage our disease whilst holding down a steady job. Relationships with employers can be difficult if they have no prior knowledge or experience of Crohn’s, especially as It’s not always obvious by looking at us that there is anything wrong. For me, as a freelancer, I am presented with a slightly different challenge; being predominantly my own boss, I have the added pressure of if I don’t work, I don’t get paid. Pressure and stress, as we all know can be significant contributing factors to a relapse in their own right, so this can become a bit of a vicious cycle.

In these situations, I have come to learn that ultimately, health MUST come first. It’s easier said than done and I used to be very adamant that no symptom however bad would get in the way of my normal working life… In Autumn 2010, I was experiencing some of my typical Crohn’s symptoms but I was quite busy with work and so decided I would just use some ‘quick fixes’ temporarily just to get through the busy few weeks I had in front of me. This came to a climax one Saturday evening. I had been spending the evenings of that week working on a theatre show in the orchestra pit. By the last show on the Saturday I could barely sit down from pain and I ended up going straight to hospital the next day. Long story short, It turned out I have an abscess which needed draining immediately.

I learnt a hard lesson that giving in to work pressures ultimately led to more suffering and a prolonged time off from working. Since then I always err on the side of caution and intervene early, before my symptoms get out of hand and as a result, I have never had to back out of any work commitments since!

It was at this time that I also sought advice on benefits. If you ever find yourself facing the thought of taking time off work and are worrying about the pressure of losing salary, I urge you to speak to your IBD nurse, or even the DWP as you may well be entitled to some financial help if your relapse is forcing you to take a considerable amount of time off work.

Whilst I can thankfully say I am in a period of relative stability at the moment, I am far from being able to lead the everyday life of a typically healthy person. I do my best to maintain a positive attitude however, by remembering that not long ago, I was in hospital having surgery. I may not have achieved my ultimate goal of remission yet, but I have moved a long way towards it from where I started. Over an average week, I probably work between 15 to 20 hours a week. In addition I have all the travelling between the various schools, other teaching and gig venues. Although the number of hours I work in a week may be considerably less than most, all the travelling between my various places of work can really take its toll, even though I do all my travelling in the comfort of my own car. But I rest when I can and when I need to. I also remember that I AM working, which a lot of people with Crohn’s less fortunate than myself may not be able to do.

Now, I have just turned 28 and since my major surgery four years ago in 2011, I have still been living at home with a parent but am finally in the position where I feel confident enough, and earn enough money to move out and achieve my long-sought independence, which is another milestone on my journey towards remission in health and happiness in life!

Thanks to Adam for this Crohns blog post. Adam is a member of the forCrohns committee and created and manages the forCrohns Buddy Scheme.  Adam is a drummer for the band Funk Republic, available for weddings, barmitzvahs and more! 

To celebrate the forthcoming launch of Book forCrohns, we’ve launched Blog forCrohns, featuring blogs from some of the best Crohn’s bloggers on the web as well as volunteers from the forCrohns committee. We’d love you to contribute, find out more here.

Back to Crohn’s Community Stories Home