Each month we hear new tales about Crohn’s, Ulcerative Colitis and the people who live their lives with these diseases. We read about their battles, their struggles and how they overcome the obstacles that stand in their way. The one thing that struck me about these – rarely were people discussing the specific positives of living with an ileostomy.
A little about myself. I’m a 29-year-old designer from Sheffield. I was diagnosed with Ulcerative Colitis pretty much out of the blue, back in 2010 and since then I’ve had a somewhat eventful life. With at least 20 surgeries under my belt, 5 of which were serious, you could say I’m a bit of an expert in the field. I’ve had pretty much every infection possible and if something can go wrong, it probably will happen to me. Back when I was diagnosed, I’d never even heard of Ulcerative Colitis, and I’d certainly not heard of an Ileostomy. Luckily for me however I had the greatest team of Stoma Nurses. Patient, supportive and straight to the point, these people held my hand every step of the way and helped get my head around my new life.
I often hear stories from sufferers who are battling with the unexpected issues that arise with an ileostomy. Unfortunately due to the nature of the condition and surgery, there are many issues that will inevitably affect sufferers. However it’s not all bad. I’ve read countless stories from people who since having their ileostomy surgery have found nothing but positives. Yes, there may be the odd leak or embarrassing situation that leaves you legging it to the closest toilet quicker than Usain Bolt, but in the grand scheme of things, a few hiccups along the way are nothing compared to the quality of life these people have regained.
When I first took delivery of my ileostomy back in 2010, one of my main worries was how it would affect my hobbies and what I would and wouldn’t be able to do. Fast-forward 5 years and it’s fair to say I was worrying about nothing. Each and every scenario I worried about since my surgery has turned out to be absolutely fine. Granted 1 or 2 situations required a bit of a workaround but my ileostomy hasn’t really stopped me doing anything.
Personally for me, the biggest positive about having an ileostomy comes around every summer – Festival season. Music is my life and as an avid gig-goer, I can’t resist the temptation of a festival or two during the summer months. Now, music aside, what’s the one thing festivals are renowned for? Yep, you guessed it! – The facilities! Whether it’s the dreaded long-drops or less-than-luxury Portaloos – Either way, they’re rarely pleasant.
It wasn’t until a few years on in 2013 that my mate pointed out the golden ticket I had stuck to my stomach during festival season. Gone were the days I had to precariously squat over some rickety contraption perched dangerously over a man-made trench. Nor did I have to disinfect myself to within an inch of my life having escaped the blue port-a-loo of doom! I could simply pop in, do what I needed to do and be back out in less than 30 seconds, saving precious time for more important matters (namely cider). Obviously this is one of the more lighter hearted scenarios but I have no doubt than there’s literally hundreds of times when an ileostomy can be a life-saver, in both senses of the word.
So just remember, if you have an ileostomy, be it temporary or permanent, don’t let it hold you back. If you take a step back and think about the situation you’re facing and panicking about, you may be surprised to find that having an ileostomy, can improve the situation every once in a while!
If you are going away this summer remember to take at least double of your usual amount of medical supplies. The majority of Stoma Healthcare companies can now provide you with a travel certificate which is translated into a number of different languages which also includes information that security officials need to know about your medical appliances and can help you get through airport security with minimal amounts of stress as it can be a nerve wracking process when you have an ileostomy / colostomy bag.
I personally always give my travel card which I obtained through my stoma nurse to the security official before I put my items into a tray and before I go through security screening just so the rest of the team know that I have a medical condition. I have also had to be searched even though I declared that I had an ileostomy under my t-shirt but unfortunately due to security now being so tight around the world I was asked to have a more in-depth search with a female security officer. Understandably this can seem intimidating however I have to say that they do deal with the situation with total respect and are discreet and dignified. When completing another search, this should always take place in a side room alongside another security official of the same sex. Please don’t feel that you are being picked on because you have a medical condition it is just unfortunate that in the world we live in today, security guards have to be extra cautious ensuring that everything is 100% safe.
I want to be sat near to the toilets on the aircraft what do I need to do?
Anybody who has suffered from IBD / Bowel Cancer or any other bowel related disease will feel the need to know where the nearest bathroom is and to be situated in close proximity especially during a long flight.
When checking in for your flight notify a check in member of staff and they can try to re-position you nearer to the bathroom facilities due to the nature of your medical condition and for peace of mind. You can also check-in 24 hours before online with the majority of airlines these days and can therefore personally choose where you want to sit.
Will my stoma bag inflate during the flight?
Stoma bags are now very advanced and are tested and checked in high and low pressure situations to ensure that they are comfortable for the patient, therefore your stoma bag will stay intact for the flight without it inflating.
Can I carry my stoma supplies in my hand luggage?
The travel card which you can now obtain from your healthcare provider or stoma nurse advises the items of which you can take on-board during a flight this does include your stoma scissors. I personally would always advise that you take the majority of your supplies in a separate suitcase or holdall on-board the aircraft in case your suitcase goes missing once you reach your destination.
Travelling by car over the holiday season:
Many of us will know that the roads can become chaotic over the Christmas period with hours of traffic jams to sit in, therefore once again I would advise that you bring extra stoma supplies if you are travelling to stay with friends or relatives. Perhaps ensure that you have some disposable bags with you in your vehicle in case you have to empty your bag at the side of the road or in the vehicle as you never know if you’re going to be stuck in the traffic for hours with a full ileostomy / colostomy bag and you don’t want to end up having a leak due to a full bag. I know this isn’t always a likely situation but it is always good to prepare for the worst. Stopping at service stations during your journey is always advised to empty your appliance frequently.
Days out over the holiday season:
It is a good idea, if you are out for the day, to always carry a spare set of stoma supplies either in the car or with you, so that you can deal with any issues and then carry on with your day rather than having to return home, I would also always advise that you always take or have a spare set of clothing in your car in case of any leakages.
Ostomates should receive a radar key from their stoma nurse or healthcare provider which can be used for a variety of disabled toilets across the UK.
The use of disabled toilets can often be useful for when and if you need to change your appliance as these toilets are better equipped with bins, mirrors and wash basins along with being more spacious to move around in when changing your appliance.
Checking out toilet facilities in an unfamiliar area before you need them will help to give you peace of mind. If one is not suitable you can find another before an issue occurs. It is always useful to carry some spare toilet paper and wet wipes in your bag in case the toilet facilities are lacking.
By Charlotte Guinea
Fizzy Drinks and your stoma
Fizzy drinks will increase the amount of wind that you pass in your ileostomy or colostomy pouch. It is likely to make your stoma more vocal and can cause ballooning of the pouch.
To reduce this avoid fizzy drinks or drink them in moderation. Let it stand once poured for 10 minutes or stir with a spoon to allow some of the gas to escape.
Alcohol and your stoma
You can still drink alcohol if you have a stoma but it is advised only in moderation. Gassy drinks such as beer and lager can cause a lot of wind and loosen the output of the stools. I would always advise that when drinking alcohol for every drink that you have consumed ensure that you drink a glass of water in-between to keep you hydrated.
Excess alcohol will affect you just as it affects people without a stoma. Alcohol tends to make you pass more urine. This can make you more susceptible to becoming dehydrated if you have an ileostomy. The key is to make sure you have LOTS of water whilst drinking alcohol as this will stop you from dehydrating.
Christmas Dinner and your stoma
The majority of us tend to eat more over the Christmas holiday period.
We indulge in different foods that are often richer than our usual day to day diets and our meal patterns may be irregular due to eating later on in the day than usual.
If our food intake increases, our waste output will increase. For those with an ileostomy this is likely to require emptying the pouch more often in a 24-hour period or, for those with a colostomy, this means more pouch changes if you are using a closed pouch.
Different foods will also have an effect on the consistency of the stools that are produced. Foods that are high in fibre stimulate the gut and may produce more wind and looser stools as the waste passes through the gut much quicker giving less time for water to be reabsorbed.
A high fibre intake can cause a blockage, particularly if you have an ileostomy. This is caused by the indigestible fibre that can block the flow of waste into the pouch. It tends to be associated with colicky abdominal pain and the stoma stops working. Should this happen the following steps may help relieve th blockage:
- Stop eating for up to 24 hours but continue drinking plenty of water. This can gently help the blockage release itself.
- Gently massage the abdomen in a big circular clockwise motion. This may ease the pain and help the blockage pass through the bowel.
- Soaking in a warm bath may relieve the spasm and help the food blockage to pass through.
If these measures are successful the ileostomy will start functioning as usual again. You may start eating again but keep to a light diet for the first 24 hours or until stools return to your normal consistency. Continue drinking well to replace the excess fluid you lose through the ileostomy to prevent dehydration.
If these measures are unsuccessful or your pain becomes worse or is accompanied by vomiting you need to seek emergency medical help.
If you start vomiting you can become dehydrated very quickly, especially if you have an ileostomy.
Some of the high fibre foods that may be encountered at Christmas are dried fruits, pineapple, nuts, coconut, citrus fruit pith and skins, celery and sweetcorn.
Most people with a stoma can eat all these foods in moderation and as long as the food is chewed particularly well to aid the digestion process you should be fine. You tend to run into problems if you eat a lot of these foods at any one time. It is always advisable when introducing a new food to your diet to have a small portion first such as one or two tablespoons worth to see what effect it has on your stoma function. Everybody is different in their tolerance and response to foods, plus there is the effect the surgical operation has had upon their bowel function to consider.
Brussels sprouts are notorious for making those who eat them more windy and odorous, as is the case with other vegetables in the brassica family such as cauliflower, broccoli and cabbage. Cooking them in water rather than steaming or microwaving will wash away some of these problem chemicals and cooking them on the softer side will help the digestion process.
Other Christmas foods that make an appearance in your pouch and may have an effect on your stoma are:
- Beetroot, which can colour urine and stools red and can easily be mistaken for bleeding.
- Stilton and other smelly cheese, which can increase odour from the stoma output.
- Spicy pickles and pickled onions, which may increase odour, wind or affect your stool consistency.
I hope that this guide helps you have an enjoyable and stress free Christmas Period and wish you all the very best for 2016
After initially having an emergency full colectomy at 21 years old in March 2013 for Ulcerative Colitis and having just come out of a two year relationship I have to say that I was terrified that I wouldn’t ever meet someone who would accept me for me with an ileostomy.
For the first few weeks post op I suffered heavily with extreme emotions one moment I was overjoyed that I was free from ‘inflammatory bowel disease’ and that I could now go out with friends, drink, socialise and have fun like a normal 21 year old should be able to do but at the same time I suffered heavily with low days this was when the thought of my appearance began to worry me.
My thoughts initially were; will anyone ever love me again? Will a guy find me attractive with an ostomy bag? What if I sleep in the same bed with someone and my bag explodes everywhere? All these thoughts began to enter my mind until I had a few words with myself and thought actually why should I panic? If someone meets me, dates me, gets into a relationship with me then obviously they are going to love me for me and not what I look like or my disability.
Over the first six months after my initial surgery my confidence had begun to grow, I had lost a lot of weight from my operation but to the point where I wasn’t too slim or too large I felt comfortable with my figure and the way I looked and was starting to accept what had happened to me. I began going out again like your typical 21 year old, I could drink and join in with the rest of my friends on a night out and I gradually began to speak with guys and also get attention from them which made my confidence grow and realising that only I knew that I had an ostomy bag so I shouldn’t be afraid to be myself around new people.
In July 2013 I started to date again, luckily for me I met a guy through mutual friends so he was given the heads up that I was living with a difficult condition. This made things a little easier for me as I didn’t need to go into the details unless he was genuinely interested.
Around one month later things began to phase out and he ended things with me via text which at the time completely knocked my confidence and I felt like I was back at stage one with those ongoing thoughts of being unattractive. Who would want to be with someone with an ostomy bag etc? However, I began to realise that we were not meant to be after all. He couldn’t stand hospitals and had said he wouldn’t be able to visit me so I began to realise I was much better without him!
Over the following month during September 2013 I suffered heavily with a bout of depression, life had been so great, busy and wonderful from March that year and suddenly it had now all come to an abrupt halt. I couldn’t understand why I was feeling so low, when I spoke with my stoma nurse she was the first person to remind me that I had gone through a lot for a 22 year old girl and that I should be proud of how far I had come.
She also reminded me that I had just had MAJOR surgery within the last six months and was still getting over the general anaesthetic. I soon found out that common side effects from General Anaesthetics are mood swings, weight loss, weight gain and hair loss so now some of those symptoms were beginning to make sense.
My nurse had told me to not be so hard on myself after all I’d had masses of morphine and other drugs to numb the pain post operation so I was bound to get to a point of feeling low. After all they do say it can take up to one year for a general anaesthetic to exit the body and rid it of all the drugs.
Karen, my stoma nurse, asked me whether speaking with other patients who were awaiting surgery for a stoma would help with my wellbeing as well as theirs, at first I thought why would they want to be faced with negative old me but then I realised that helping others come to terms with what they had gone through or were about to go through also helped me. In a funny sort of way, helping others with their thoughts and worries began to help me with my own fears. I soon began to realise that there were people in far worse situations than myself which made me even more willing to help out.
Over the following 6 months I continued to volunteer at my local hospital where I was still undergoing surgeries and treatment as the Ulcerative Colitis symptoms began to come back and I was then diagnosed with pouchitis which is inflammation of the J-Pouch.
I had, had my jpouch formed in November 2013 but I had to wait another year for my final surgery which would result in removal of my ileostomy, meaning my bowels would function by me going to the bathroom from the back end again however the following months resulted in various tests, surgeries and treatments. I would not let my condition beat me and I continued to fight and in doing so I started to raise awareness on ‘inflammatory bowel disease’ which is where I came up with the tagline of ‘breaking the taboo on poo’.
I got myself involved with Crohns & Colitis UK, the national charity who had supported me from diagnosis back in 2007 to present so I started to blog, participate in media interviews for national newspapers and magazines and in July 2014 I even took part in a live debate on ostomy bags on Sky news. I was now in a place where I felt confident in myself, my body and with talking openly about my condition.
In April 2014 I started speaking with a guy who I met on an online dating website at first I just went online to see what it was all about and I guess in some ways to continue building my confidence. We spoke nearly every day for the following two months and within that time we discussed my condition of which didn’t seem to faze him at all.
We immediately seemed to click and even though we hadn’t even met up at this point I already felt like I knew him and he knew me and more importantly he knew about my condition and didn’t run for the hills which made me respect him so much more.
In June 2014 I finally plucked up the courage to meet up for our first date, I was nervous however I still felt like part of me knew him through speaking on text and so when we met we had plenty to talk about without it really feeling like it was a first date. I feel that because I was so open and honest about my illness and my ostomy bag it made him want to know more and he also respected me for my honesty and bravery for what I had been through at such a young age.
Over the following month we began to date which was great as I wasn’t limited to going to certain restaurants or worried about where the nearest bathroom was, as I had my bag for peace of mind. Within a month we began to officially become a couple which is when I knew that he had totally accepted me for who I was and not just because I had an ostomy bag and he was feeling sorry for me. Our relationship grew from strength to strength as we continue to do so.
My partner Calvin and myself will often have open conversations regarding ‘poo’. It now seems to be the most common topic spoken within our household and among family and friends I guess that is now because we are so comfortable and so open with one another.
Calvin did admit to me at one point that when he googled the word stoma on google images that he did nearly faint to see what one actually looked like and this did make me laugh as I know he is the squeamish type.
The great thing about our relationship has been the openness, the honesty and the ability to be ourselves. Just like any other couple we have our good and bad days with one another I have at times felt like a total burden, however I can’t thank him enough for standing by me as he has totally been my rock over the last year.
Since Calvin and I started dating I have had at least 6 more surgeries and he and my Mum have been at my bedside in recovery every time I have woken up even though I have been miserable, high from morphine and very sleepy they have both stood by me and humoured me even in my darkest days.
I wouldn’t have got through the last few years without the great support network of my family, friends and my partner and I will continue to raise awareness on inflammatory bowel disease and ‘break the taboo on poo’.
When I first got my stoma who I promptly named Ludwig (after Beethoven), I never dreamt that I would be physically fitter than I was before my operation! Post-surgery I had really problematic chronic fatigue and I was always a person out enjoying life, so to be driven to bed by fatigue was really frustrating not to mention depressing. Eventually I was referred to an endocrinologist who specialises in chronic fatigue and she diagnosed me with complex medical fatigue with the underlying issue being my Crohn’s Disease. She suggested that gentle exercise would help me to overcome my fatigue amongst lots of other techniques I could use to help me. So I started swimming and slowly but surely I started to feel better. Scientifically exercise releases endorphins which helps to fight against things like fatigue. However, whilst swimming, I came across a quote which was emblazoned on the wall, ‘Champions aren’t made in the gyms. Champions are made from something they have deep inside them – a desire, a dream, a vision. They have to have the skill, and the will. But the will must be stronger than the skill’ (Muhammad Ali). I began to desire a challenge with my stoma and so I took up running.
At first it was difficult, I had to focus on keeping myself hydrated and getting the balance of my Imodium right so that Ludwig stoma wasn’t gushing out as I was running. Yet, gradually I built my distance up and 8 weeks after starting running I completed my first 10K which must have been the worse race to pick as the course was entirely hilly!! My poor thighs afterwards… However, it was a great achievement and I felt mentally and physically better, not to mention more confident about what I could achieve athletically with my stoma. Thus, I began training for my half marathon.
I completed the Liverpool Half Marathon on the 29th March 2015 and it was one of the hardest races I have ever done. Firstly because I didn’t apply my bag at an angle which meant my bag chaffed my leg (where was Vaseline when I needed it?), secondly the weather was torrential. My Crohn’s was very active at the time of the race and I also had problems with fistulas around the base of my stoma. At 9 miles, my stoma leaked! Due to the torrid rain, there was also nowhere to change my bag so I had to grit my teeth and hobble to the finish line of the 13.1 miles to complete my race. It wasn’t my best time but it was one of the biggest achievements of my life as my will became the determination needed for me to keep going. Since, I have completed two marathons, another 10K and another half marathon.
I run because it helps me with my disease, it helps with managing my disease and pain but mostly it gives me a desire to overcome the obstacles placed in my path that having Crohn’s Disease presents me. I find that exercise helps to give me a positive frame of mind. Having a stoma was no obstacle to completing the races and at times it was easier to run with a stoma than without – I wasn’t worried about toilets along the way! Now, I am training for triathlons!
However, here are my top tips for running with a stoma:
- Apply your bag at an angle as it helps to prevent chaffing, this works if you wear the maxi size bags or are petite like me and the bags rub on the top of your leg.
- Get a good routine for hydration sorted out, for me running with dioralyte as fluid is better for me than just water but it is whatever, works for you and also depends on how much bowel you have lost etc.
- Wearing a support belt can keep the bag more secure and if you do sweat a lot around the stoma it can help to keep the bag on.
By Dr. Sarah Brewer
Learning that you need a part of your bowel removed always comes as a shock. Often, it’s difficult to take in all that you’re told, and you may not know at first exactly what procedure you will have, and whether an ileostomy or colostomy will be temporary or permanent.
Where possible, your surgeon will try to join up (anastomose) the cut ends on either side of the resected bowel. If this is not possible, perhaps because of poor blood supply, because it would produce too much tension, or because the lower end of the bowel is involved in the disease process, your surgeon may fashion an ileostomy or a colostomy.
An ileostomy connects the end of the small bowel (ileum) to an opening (stoma) made in your abdominal wall, usually on the right hand side, to form a ‘spout’. Waste is soft or liquid, and collected in a pouch that can be drained from a sealable opening at regular intervals.
A colostomy connects part of your large bowel (colon) to an opening (stoma) made in your abdominal wall, usually on the left hand side. Waste is semi-solid or solid and collected in a colostomy pouch which sticks to the abdominal wall and this is usually replaced one to three times a day.
A temporary stoma may be needed to give damaged or operated bowel time to rest and heal, and is surgically closed several weeks later, after all swelling has settled down. A permanent ileostomy is needed if all of your lower bowel is removed (total colectomy), while a permanent colostomy is needed if the lower rectum is involved in the disease process.
What if I don’t have the operation?
If surgery is not carried out when recommended by your surgeon, it is likely that you will experience a worsening of your symptoms, and of your health. Depending on the bowel disease you have, you may develop a blockage, a perforated bowel or an abscess, all of which are potentially life threatening. If you have cancer, it is more likely to spread and become incurable.
What are the benefits?
Surgery removes diseased bowel and gives you the best chance of a cure for some diseases, such as bowel cancer. It can also significantly improve bowel symptoms such as persistent pain or looseness if you have an inflammatory bowel disease.
What can I do to prepare?
Try to be as fit and healthy as possible through gentle exercise. Eat a well-balanced diet, unless advised to follow a particular eating regime. You will usually see a stoma care nurse before your operation who can offer support and advice so you know what to expect and can make plans to adapt your lifestyle. You can also obtain invaluable advice and support from the Colostomy Association www.colostomyassociation.org.uk and the Ileostomy & Internal Pouch Support Group www.iasupport.org.
What happens during the recovery period?
You are likely to feel tired during the first few weeks after your operation, but gentle mobilization is important to reduce the risk of developing a deep vein blood clot. You will be advised not to lift anything heavy, or to carry out strenuous activities, for at least the first 6 weeks. You should not drive until you are advised that you can do so by your doctor and insurance provider. This is usually once you can perform an emergency stop without fear that your wound may hurt.
You may experience urgency, constipation, diarrhoea or loose stools after surgery, which usually settles down. Medication can help to bring these bowel symptoms under control. When, or if, you can return to work depends on the bowel condition that you have, how well you are generally, and the type of work that you do.
Living with a stoma
When you leave hospital you will be given a list of products that you need, and your GP will issue prescriptions for these when you need new supplies. If you have a permanent stoma these supplies will be free of prescription charges, but if you have a temporary stoma you may have to pay prescriptions charges unless you’re over 60 years of age. Information on prescription costs and exemptions is available here: http://www.nhs.uk/NHSEngland/Healthcosts/Pages/Prescriptioncosts.aspx
You can obtain your repeat prescription products from a pharmacy, or direct from a Supply Company (whose details will be given to you by your doctor or hospital) who can take care of repeat prescriptions for you if you prefer. They can phone you each month, contact your surgery for the necessary prescriptions, and send the order to your home (in plain packaging) which often makes life a lot easier. There is an excellent overview of all your options here: http://www.colostomyassociation.org.uk/index.php?p=217&pp=3&page=Obtaining%20Supplies
Some people may prefer to use colonic irrigation as an alternative to wearing a colostomy appliance. Information on this option, and other diet and lifestyle advice is available here: http://www.nhs.uk/Conditions/Colostomy/Pages/living-with.aspx
It’s natural to worry that others may notice you are wearing a colostomy or ileostomy bag, but modern systems are discreet and secure, so few people will know unless you tell them. Accessory products that can make living with a stoma easier include support belts, deodorisers, protective skin wipes, non-sting adhesive removers, skin cleansers, barrier creams and discharge solidifying agents. These products can be ordered directly from your stoma pouch supplier. You can also request patient samples from suppliers such as Opus Healthcare, http://www.opus-healthcare.co.uk/products.
Waking up and seeing my stoma for the first time was one of the hardest things I’ve had to go through but not as hard as suffering with Crohn’s disease for the last 10 years. Being in hospital away from my children for 3 weeks after having the operation was heart wrenching as I’d been in hospital a few times before but not for this long. My youngest daughter was 13 years old and my eldest daughter 17 and I’d been a single Mum for 12 years doing everything for them. Providing a home, working full time and being a mum was very hard especially when you suffer with Crohn’s disease.
My girls accepted the fact that I had a stoma very well. I think they saw it as my life saver and they knew that I truly wouldn’t be here if I didn’t have my stoma.
In the first few weeks I had some issues with my stoma like sore skin and leaks so I was very nervous going out but I really wanted to grab hold of normality and do things with my girls that I hadn’t done for a long time.
I remember going to the cinema with Livi, my youngest, and during the film I got up to check all was okay and at the end of the film, again, checking everything was ok. That was when I had my first leak outdoors and it really threw me and I could see worry on Livi’s face too which made me pull myself together, sort it out and be brave for her sake. I think because I adapted really well with the stoma it made my girls more at ease with it. Livi had seen my stoma when I was in hospital, she watched whilst the stoma nurse was changing my bag and she wasn’t squeamish at all. The situation with leaks and sore skin didn’t last too long although at the time it felt like forever! Once I found the right bag for me things started to get a lot better and I began developing confidence. I always took an emergency supply of bags with me wherever I went just in case I had a leak but fortunately I have never had to use it. My girls being teenagers were at the age where humour would really help with situations. I found by laughing at certain things like the smell of the bathroom when I’ve just emptied my bag really does lighten the fact of having a stoma. They made jokes about me not having a bottom, in a very jovial way, and we all laugh about it and I think that has really helped in coming to terms with it all. After all they do say laughter is the best form of medicine don’t they?
It’s been 2 years since I had my op and I do think sometimes they forget I have a stoma as I don’t let it stop me doing anything at all. Life really is so much better and my girls feel they have their mum back. We go swimming, cycling and all the things we did before I got sick. We even spent 5 hours in a water park on holiday and I went on most of the rides!
It’s been two years since my life with Winne (my stoma) began. Since then I’ve been through an emotional roller coaster and got used to living a life without the constant pain of ulcerative colitis tearing my life and bowel to shreds. Winnie is now my permanent companion and I’ve never looked back.
But my journey through my first few years hasn’t all been plain sailing and trying to find the right products to keep her happy has been a tough job. Having sensitive skin, prone to eczema, spots and dryness, has caused chaos and it took me over a year to find the right appliance that didn’t leave my skin raw and weeping. So when Opus asked me to give a couple of their products a trial I was apprehensive to move away from the wipes and sprays I knew worked for me and take a leap into the unknown.
But as I only usually stick to the simplest routine of washing and drying my stoma I thought it wouldn’t hurt to try a few new things to see if I could improve my routine. Some of the products I have to admit I was too frightened to try, but I found two that I absolutely loved.
The Lift Plus 360 adhesive remover did exactly what it said on the can – which is unusual and always a pleasant surprise. Unlike my normal remover it only took two sprays to lift my appliance completely away, without leaving the gunky residue behind.
The second product I started using and then didn’t stop until all the samples were gone, was the LiftPlus adhesive remover wipes. If you’ve not used a wipe, but always stuck with a routine of just using a spray, you are missing out. The wipes are so thin and small you can put them in your purse or pocket, carry them on nights out, leave them in your car or even take them on holiday. I always have a supply on me in case of emergencies and take them on planes instead of the sprays.
There are many other products I tried, including in pouch deodorants, skin cleansers, barrier creams and room sprays, but the wipes were my favourite. And unlike others I tried they were scented – which is always an added bonus.
Digestive problems are a common reason that people seek out a Nutritional Therapist. One particular lady who springs to mind is Gina, a 19 year old who had just been diagnosed with Crohn’s Disease. In her second year at University, Gina’s symptoms were debilitating, her energy levels were rock bottom and she was losing weight even when eating normally. Her medications included steroids, mesalamine and pain relief. Unsurprisingly, given her age and lifestyle, her diet was fairly high in processed carbohydrates including sweet and savoury treats like crisps and chocolate.
From a nutritional point of view we addressed two key factors. The first was to remove all wheat products and the second was to focus on fresh, natural unprocessed foods.
Grain intolerance, particularly to wheat, is a significant issue to many and can be an underlying cause of digestive issues, obesity and ill health. William Davis MD has written extensively on this topic.[i] His book Wheat Belly talks about the issues with the development of the wheat grain in production today. This has been hybridised to increase yields but also, he believes, now has a significant allergenic potential for many people.
In susceptible people, wheat and other grains may contribute to the manifestation of chronic inflammation by increasing intestinal permeability (aka ‘leaky gut’) and initiating a pro-inflammatory immune response.[ii] This is particularly relevant for people with IBD[iii], where increased inflammation is a hallmark of the disease.
But how to eliminate gluten with a University student? Her main staple was pasta, and this had to go. Rather than focus on denial, we reframed it and introduced her to an alternative of courgetti. Using a spiraliser (available here http://www.ukjuicers.com/spiralizers) this quickly and easily makes ‘spaghetti’ out of courgettes. They don’t even need to be cooked which makes preparation a breeze. I took some courgette with a sate (peanut based) sauce into the consultation for her to try and she was blown away. They taste so good! And importantly, it enabled Gina to shift her focus and even be a trendsetter amongst her friends.
Now for the processed foods. We are inundated with pre-prepared meal solutions and for a young girl living with friends these may seem like a really good idea. But they are usually loaded with processed carbohydrates and contain additives which may antagonise symptoms. A simple mantra of eating real food encourages a switch to nutrient dense eating which has an enormous pay off for health. The recipe below for chocolate brownies is highly nutritious and delicious too.
So how did Gina fair? Well, 4 years on she is largely able to control her disease with medication and diet. She can now tolerate small amounts of good quality wheat but faces an immediate flare up if she ventures to more processed products such as pizza bases. She still avoids high sugar and processed foods. Quinoa is a reliable staple, and she can also tolerate some oats occasionally. Her energy is now greatly improved and she can easily work a 10 hour day and go out afterwards, which was a real problem in her earlier years.
Chocolate Brownies – Serves 16
This delicious recipe is easy to make, gluten free and packed with protein from ground almonds, walnuts and eggs. And because it is so satisfying, you’ll be less likely to over indulge too. A little bit of what you fancy can indeed do you good!
150g coconut oil or butter
125g 70% chocolate
2 ripe bananas
2 tsp vanilla extract
2 tsp baking powder
30g cocoa powder
150g ground almonds
200g walnuts, chopped
- Pre heat the oven to 180°C.
- Cream the oil or butter and sugar using a wooden spoon or mixer.
- Melt the chocolate in a bowl over hot water or in a steamer.
- Mash the bananas with the vanilla extract.
- Beat the eggs in a bowl.
- Mix the dry ingredients in a large bowl – almonds, baking powder, cocoa and walnuts.
- Add the wet ingredients to the dry, stir to combine well. Pour into the lined cake tin and bake for 20- 25 minutes.
Jenny Phillips is a Qualified Nutritional Therapist who helps people to achieve their best health ever. Her website is www.InspiredNutrition.co.uk
Davis W (2014 ) Wheat Belly: lose the wheat, lose the weight and find your path back to health. Harper Collins
de Punder K, Pruimboom L. (2013) The dietary intake of wheat and other cereal grains and their role in inflammation. Nutrients. Mar 12;5(3):771-87
Herfarth HH, Martin CF, Sandler RS, Kappelman MD, Long MD Prevalence of a gluten-free diet and improvement of clinical symptoms in patients with inflammatory bowel diseases.. Inflamm Bowel Dis. 2014 Jul;20(7):1194-7.