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Alison Fisk – “The benefits of talking are immeasurable”

A dental hygienist who has lived with Crohn’s disease for more than 20 years has spoken of the reassurance she received from sharing experiences with others while urging anyone else who has recently been diagnosed not to be afraid to talk.

Alison Fisk first experienced symptoms in 1994 when eating would cause either severe pain or sickness. As she was taking her A-levels at the time, her GP initially diagnosed her with irritable bowel syndrome exacerbated by stress, which left Alison questioning herself and wondering what steps she could take to change her lifestyle.

She struggled on for two years until she was diagnosed with Crohn’s disease just before her 21^st birthday after she began throwing up bile and was admitted to Colchester Hospital as an emergency.

“My symptoms were quite extreme,” said Alison. “I was in limbo and got very low – I didn’t know what was going on with my body or what I could do differently to make my life easier.

“The way I was diagnosed was difficult. I’ve had Crohn’s for 20 years and lots of operations since, but that was the worst part of it for me – I just wish it could’ve been quicker.

“But getting that diagnosis was still a relief – at least then I knew what I was dealing with and that it wasn’t just in my head or something I was doing wrong.”

During her admission, Alison’s surgeons discovered a section of her bowel was sticking together and performed a bowel resection and abscess drain to relieve her symptoms. Although the operation ran smoothly, Alison’s wound re-opened while she was recuperating, which elongated her recovery and forced her to take several months off work.

In the years following her first surgery, Alison was able to control her Crohn’s with medication, which meant she enjoyed a long period of good health and remission. This continued until 2014 when she started suffering with diarrhoea and underwent a second operation and Infliximab infusions to treat a fistula.

Two years’ later, Alison experienced further difficulties when sections of her bowel began sticking together once more. Her surgeon warned her that she may need a temporary stoma, and she fully expected to wake up with a bag after her surgery.

“The possibility of having a bag has been there ever since I was diagnosed,” said Alison, who is in her 40s. “As I’ve got older, I’ve accepted it – people get on with completely normal lives with a bag, so there is no reason that I shouldn’t be the same.

“Before the operation, I spoke to the stoma nurses who told me what would happen and marked me up. They were excellent – I cannot praise them enough. They assured me that they would be there for me after the surgery and wouldn’t let me leave hospital until I was absolutely confident in managing my stoma. They talked about the equipment I’d need and gave me a bag so I could get used to the feel of it, and said they would always be available on the end of the phone if I needed help or support. I was very appreciative – they removed the worry I was feeling and I cannot stress enough how fantastic they were.

“In the end my surgeon was able to carry out a second resection without giving me a bag. I accept I will probably need one in the future, but thanks to the stoma nurses I’m no longer scared about the prospect.

“The care I had was amazing and I recovered much more quickly the second time thanks to the enhanced recovery programme which the hospital now runs, which wasn’t available when I was 21. The programme aims to make sure you are as healthy as possible before surgery and receive the right support to get you up and moving afterwards. Thanks to the dedication of the staff, I was able to go home the day before my 40^th birthday, which was great.

“I’m now doing really well. I do whatever I like, carry on with my usual activities and forget about the condition. I don’t let Crohn’s rule my life and love holidaying in America, especially going to theme parks with my husband. I also teach Burlesque dancing and adore dressing up and partying at Butlins with my friends.

“I go back to the hospital for a yearly review and will give them a shout if I have any problems or flare-ups outside of that time. I feel reassured that if there are any issues I will be listened to and it will be sorted out quickly.

“I would urge others who have recently been diagnosed with IBD to keep talking. Get in touch with the Crohn’s and Colitis UK (CCUK) charity and they will give you lots of information and can put you in touch with other people going through exactly the same thing, if you feel that would help.

“For me, the benefits of talking to someone else were immeasurable – it can feel very alone when you’re first diagnosed as bowels are not a subject many people like to discuss. Talking to someone else makes such a difference and shows you that there is still life after an IBD diagnosis.”

Chloe Shortall – “I’ve regained control of my life and am able to do the things I love again”

Chloe Shortall

A keen traveller who was forced to put her adventures on hold due to severe Crohn’s disease is busy planning her next trip following successful surgery which she credits with giving her back her life.

Chloe Shortall first became unwell in September 2011 when she started to feel very sick and developed crippling stomach pains. Her symptoms became progressively worse over the next few months, leading to significant weight loss as she was unable to keep down any food.

Chloe underwent a series of investigations at Colchester Hospital before being diagnosed with Crohn’s in July 2012 – a moment she describes as a “real relief” as it meant she was able to start treatment.

“I didn’t have any of the usual symptoms associated with Crohn’s, so initially I had an endoscopy and various other scans – none of which showed anything wrong,” said Chloe, who lives in Braintree. “My doctors ended up diagnosing my illness when I went for a colonoscopy but the inflammation was so severe that even the scope usually reserved for children would not fit through the bowel.

“It was a real relief as I was really concerned about what was happening to me. When nothing showed up after my original tests, I started to worry that it was all in my head. Getting the diagnosis meant that we could do something about it so that I could hopefully start to feel better and get back on track.”

Chloe began a course of steroids which also stimulated her appetite. Within a few days, her pain subsided and she was able to eat again. She went on to spend several summers working at an American summer camp, including an 18 month work abroad programme, before her Crohn’s returned in October 2017.

“I enjoy travelling and didn’t want treatment which would limit my options and choices,” added Chloe, who is now 28. “That is why I decided that resection surgery was the best option for me. I felt it was the only thing which would make the difference I needed to be able to get on with my life.

“I wanted to live my life and be back in control, but up until that point the Crohn’s had been at the forefront of every decision I had made. The possibility that I might need surgery one day had always been in the back of my mind, so in many ways I was prepared for it.

“I spent five nights in hospital and felt really well cared for during that time. Everyone was brilliant, from the HCAs who helped with my compression socks to the physio who encouraged me to walk when I was really apprehensive and Miss Gupta and her team, who were incredibly supportive throughout.

“I had the operation in December 2018 so I was concerned that I wouldn’t be able to eat Christmas dinner. But after a few days I started to feel better; I gained more trust in my body and started to push myself to do more things.

“I am now back to my ‘normal’. I’ve been going to the gym to feel stronger and I feel like I am more in control of my life. I’m now able to eat whatever I want and do whatever I want, which is brilliant.

“It’s now a year on and I went to Spain in April and America over the summer, and am planning to spend next year in Australia. The hospital will keep a check on me to make sure I’m doing ok and Miss Gupta has told me to call if I feel the Crohn’s is coming back, but fingers crossed that won’t happen.”

Chloe is now encouraging others in the same situation to do as much research as they can about the condition to help take away some of the worry they may be experiencing following a diagnosis, which she feels also helps to normalise it and make it less scary.

She added: “Talking to others who have the same illness is really important as it will help you find out how they manage the condition, the impact it has had on them and the things they have done to help. If you’re facing surgery, look at the potential positives – you might lose a piece of your bowel, but it will give you back that sense of control and mean you are able to do the things you love again as Crohn’s will no longer be the biggest factor afterwards.

“It will be a change which you will adjust to, but it gives you back your life.”

Sam Hinds – “Don’t let Crohn’s stop you – there’s nothing you can’t do”

A young patient who experienced the first signs of Crohn’s disease aged just 14 has urged others who have been recently diagnosed to take their medication and follow their doctor’s advice to give them the best chance of successfully managing the illness.

Sam Hinds realised something was wrong after dropping around seven stone within the space of just six months. He lost his appetite and would experience severe pain after eating, which left him sapped of energy and unable to take part in normal teenage activities with his friends.

After several visits to his GP, his mum insisted on a referral to Colchester Hospital after recognising similarities between Sam’s symptoms and those faced by his aunt, who has Crohn’s. A colonoscopy examination confirmed his diagnosis, and Sam was prescribed medication to help control his symptoms.

“Anything I ate would leave me in pain – it became a choice between feeling hungry or being very uncomfortable and nauseous,” said Sam, who is now 23. “I spent my days curled up in bed unable to move, had low energy levels and found it difficult to get motivated.

“Receiving the diagnosis was hard as I didn’t want to believe it. I was only 16 but had a potentially debilitating condition which would affect me for the rest of my life. As a result, I didn’t take the medication I was prescribed – at the time I thought it was easier to block out the illness and ignore it – but that decision came very close to killing me.”

Three years later, Sam was rushed into hospital with severe abdominal pains. The cause of his discomfort became clear when his surgeon discovered two feet of rotting bowel inside his abdomen while carrying out a resection operation.

“My bowel was necrotic – it was so severe that it should’ve killed me several months earlier,” said Sam, who lives in Wivenhoe. “I don’t know whether it was because I didn’t take the pills, but there’s a massive possibility that contributed to it. If I’d listened to the experts I may have kept on top of the illness and this may never have happened.

“Two weeks later, I faced some complications and had a second surgery to form an ileostomy. I was only 19 so found adjusting to the stoma hard – but know that it was life-saving and I wouldn’t still be here without it. I’d advise anyone else who is given the option for an ileostomy to go for it – if you experience any problems, there are always things the nurses can try to help mitigate them so that you can get on with your life.

“My stoma was reversed after about six months, and although it took me time to recover, I felt healthier than I had for the past five years. I went back to work and defied everyone’s expectations – I was really proud of myself.

“Since then I’ve been back to hospital a couple of times with obstructions, but have been prescribed new anti-inflammatory medication and an anti-tumour-necrosis inhibitor, which already feel like they are making a massive difference.

“I still need to be careful what I eat and drink, but have very high hopes for the drugs and hope I continue to improve so that I can show the Crohn’s I’m winning, get back to work and eventually to full remission.”

Sam is now issuing a heartfelt plea to other young people who have been diagnosed with the illness, urging them not to repeat the mistakes he made and follow the advice of their doctor.

“My message is simple – take any pills you are given, attend your appointments and don’t try and ignore the illness – a couple of years down the line, it could end up almost killing you,” he said.

“Find something which motivates or inspires you, like a quote or a poem or a verse, and use it to help you keep going through the tough times. If it makes you feel better even just for a couple of minutes, then that shows you are strong enough to keep going for the next two minutes and the next, and the next.

“Its also important to remember that there’s nothing you can’t do – you just need to be a bit more careful than other people. You can go for walks, play football, ride a bike and go to the gym – just take it slowly.

“Above all, don’t let Crohn’s stop you. The condition can cause a lot of pain, but don’t let it take over. Although its one aspect of your life, it doesn’t define you as a person.”

Sue Grimwade – “It has made such a difference – I’m feeling so much better”

A housekeeper who was forced to give up her job after experiencing severe symptoms from Crohn’s disease is looking forward to getting back to work following a resection operation which she credits with making a real difference to her quality of life.

Sue Grimwade first experienced stomach problems in January 2017 when she began suffering severe pains, started being sick regularly and found herself running to the toilet six or seven times a day. She was initially diagnosed with a virus, but asked her GP to refer her to Colchester Hospital for tests when she didn’t feel any better two months’ later.

Sue was diagnosed with Crohn’s disease in July after having colonoscopy and endoscopy examinations. She then transferred into the care of consultant surgeon Miss Sharmila Gupta, who recommended a resection operation to remove part of her large bowel. The surgery took place in January 2018 and – two months on – Sue was already feeling much, much better.

“The operation has made such a difference, and although I’m still recovering I’m feeling so much better than I did before the surgery,” said the 58-year-old, who lives in Colchester. “The symptoms have eased a lot and the pains are much, much better. I don’t need the loo as often, and although I still need to be careful with my diet and avoid things like eggs, I hope that will continue to improve with time.

“I was in hospital for seven days. I was lucky as I had enough healthy intestine for my surgeon to stitch together, so didn’t need a stoma. I received some really good care, especially from Miss Gupta who was really lovely.

“I’m still recovering but hope to be able to get back to my job as a housekeeper later this year. I can’t do a lot of walking yet – I need to build up gradually and make sure I don’t try and do too much too soon. I’m hoping I won’t need any more treatment, but know that I will need to work with doctors at the hospital to keep an eye on my Crohn’s so that we can keep it under control.

“I would urge anyone else who has recently been diagnosed to listen to their specialist. Take their advice and do what they tell you – they know what is best for your recovery and can help you to feel better and get back on your feet more quickly.”

Victoria Fenner – “There is life after having a bag – and for me its 100% better”

IBD patient Victoria Fenner

A patient who had a permanent stoma created after suffering with severe IBD has credited the operation with giving her a “new lease of life” and reassured others facing the same surgery that there is nothing to be afraid of.

Victoria Fenner had her entire colon removed at Colchester General Hospital on 26 January 2016 after living with pancolitis – a very severe form of ulcerative colitis – for nearly a decade.

And although she admits that she found adjusting to the stoma extremely difficult in the early days, she now credits it with making her life 100% better, is relishing every day and can once again pursue the hobbies she loves.

Victoria was diagnosed on 24 December 2009 after suffering symptoms – such as needing to use the toilet very regularly – for some time. It was after passing a large blood clot that her GP referred her to the hospital where various tests, including procedures such as a sigmoidoscopy and colonoscopy, confirmed she had pancolitis. Although she was prescribed medication to keep the condition under control, the drugs also impacted on her immune system which meant she regularly suffered with other illnesses.

The situation came to a head two years ago when Victoria, who works for a local law firm, was rushed into hospital with a temperature of 40 degrees after she collapsed while taking a bath at her home in Colchester.

“I just generally felt really unwell – everything was blurry and my temperature kept spiking. I was going downhill rapidly,” said Victoria, who is now 47. “I was in hospital for approximately a week when my consultant told me that the only real option was to have my colon removed as it was at risk of perforating.

“At the time I was devastated. I’d been told about stomas and bags by my gastroenterologist, Dr Shenoy, when I was first diagnosed, but never thought of myself as being ill so didn’t think I’d end up with one. The surgery was carried out as an emergency, so I only had about 12 hours’ notice of it happening, which didn’t give me much time to come to terms with it. I was scared, but fortunately I knew two people who already had bags so was able to talk to them. They were a Godsend – I could ask them anything and knew they would answer honestly as they had been through the same thing.”

Following her surgery, Victoria decided to giver her stoma a name – Gertrude – to help her cope with the change. And although she says the strategy may not work for everyone, she feels it played a key part in helping her successfully adjust to life with a bag.

“Giving my stoma a name somehow helped detach it from me. If I woke up in the night and there had been a leak, I would tell myself that Gertrude hadn’t been well and everything would be fine,” she explained.

“And now my life is so much better – I wish I’d had the surgery a lot earlier. Before the operation I didn’t like to leave the house at times in case I needed the toilet urgently, which meant I couldn’t go on long journeys or flights. But now I can do anything – I recently flew up to Edinburgh and have also taken the train up to Carlisle and I am planning more trips further afield, while I also go to the gym, swimming pool and sauna, just like I did before.

“I was in Colchester General Hospital for a total of seven weeks, which included a week in intensive care, and the care I received from all of the hospital staff was amazing. The stoma nurses were – and still are – always available if I need any help or advice. I’m also more than happy to talk to anyone else who is facing surgery or would like to hear more about living with a bag.  I really would not be where I am today if it wasn’t for the care that I have received at the hospital and, in particular, my surgeon Miss Sharmila Gupta and her team.

“I’m very pro-stoma and am proud of Gertrude, as she both saved my life and gave it back to me. I still need to be careful with some of the things I eat, but feel like I’ve been given a whole new lease of life and now the only way is up.

“I would urge anyone else in the same position as I was to seriously think about having a bag. There is still a lot of stigma surrounding it, but there is life after stoma surgery, and for me that life is 100% better. It’s nothing to be scared of, but can really make all the difference in the world.”

As a reversal was not an option for Victoria, she had further surgery on 23 May 2017 to carry out a completion proctectomy (removal of the rectum) and repair a parastomal hernia, again undertaken by Miss Sharmila Gupta.

She said: “I was scared of another major surgery but it all went very well and now, nearly 2½ years since my first operation, I am living my life to the full again. I could not have done this without my friends, employer and the NHS and staff at Colchester General Hospital.”