Sharing some stories …

Thanks to all my clients who are a pleasure to consult with.  Helping people to improve their health and wellbeing is a primary focus at Nutrition for Ostomates.

57 year old female with Crohn's Disease - improvement in wellbeing through dietary and lifestyle changes

“My name is Annie.

I’m a 57 y.o with an Ileostomy courtesy of Crohn’s Disease. My life from the ages of 13 to 28 was spent in and out of hospital. During that period l underwent numerous surgeries both minor and major with complications being a common occurrence.

I contacted Margaret Allan last year seeking advice and guidance on some specific health issues l had been experiencing. Margaret’s knowledge not only as a Nutritionist but also as a practitioner with a clinical focus on Ostomates made her my obvious choice.

Margaret suggested some easy to follow and ‘do-able’ dietary/ lifestyle changes and also introduced supplements into my daily routine. Together these changes have made a noticeable difference to my wellbeing and I’m truly delighted with results.”

April 2017

65 year old male living with ileostomy for 44 years - improved moods and energy and enjoying a more active lifestyle

“I’m about 65 years old, and I had my colon and rectum removed (total colectomy) after suffering from ulcerative colitis for four or five years.

That was about 44 years ago and for almost all of that time I’ve coped very well with my ileostomy. Up until the last several years I have had to make few dietary concessions, other than avoiding foods with particularly high fibre content (such as coleslaw, pineapple, etc.)

A few years ago I had successfully reduced my weight significantly, and had begun to get more exercise by regular walking. This was going along very nicely … until I went for a pretty vigorous bush walk which involved lowering myself down some quite steep sections. Not exactly rock climbing, but strenuous nevertheless.

Directly after that I noticed a bulge above my stoma, which was soon diagnosed as a parastomal hernia. The change in body shape resulted in leakage problems, and after several visits to the Newcastle Stomal Therapy Nurses, and after trialling multiple alternative appliances, I settled in to a new routine. I also began wearing a hernia support garment.

Whether it’s the new appliances or the constriction caused by the support garment, I was still having some leakage problems. I’d attempted to manage that by more regular changes (sometimes daily, otherwise every second day or so). I also tried to manage my output by restricting my diet to low residue foods, and foods that resulted in a smooth and predictable output.

And then I developed chronic discomfort and pain in my rectal area, which although still not diagnosed, might be related to old scar tissue.

Together with the hernia and the rectal pain (along with a home relocation and assisting elderly and unwell parents), I became a bit depressed. I restricted my diet even further, and stopped all my exercise. The cumulative effect was a general malaise that I couldn’t shake.

I felt that poor nutrition might have been a contributing factor, so I looked in to supplements that I could take to augment my restricted diet without disrupting my output.

I browsed through back issues of the Ostomy Australia magazine at which point I realised that dietary advice for ostomates had been appearing regularly, often in the form of articles written by Margaret Allan from Nutrition for Ostomates. I contacted Margaret and found out that “outreach” consultations were available. These outreach consultations are conducted by video chats over the internet, which is handy since I live about 1,000 kilometres away from Margaret.

With my wife joining in to provide an independent view on subjective questions about my moods and energy levels, Margaret assessed my nutritional levels and then gave personally tailored dietary advice, as well as suggestions for supplements where shortfalls were identified. Those suggestions and advice have been modified over a period of about 6 months, and I am confident that I’ve been continually making forward progress.

Quite apart from Margaret’s professional manner, I’ve found her to be very personable, and I really quite enjoy our consultations.”

May 2017

61 year old female still working full time with a long-term ileostomy - attempting new foods and recipes and feeling more energised

“Teaching 28 lively 8 year olds is a demanding job at any age but now, at 61 years of age, I had been finding my energy levels were lower than ever.  I envied my colleagues who were able to stay up later in the evening, work through the day AND have a life.

I have had my ileostomy for 37 years and over that time had lost confidence in eating any foods which might contribute to further obstructions, leakages, fluid loss, electrolyte imbalance or kidney stones.  My diet had become limited and unbalanced.

Recognising this fact, some years ago I visited a dietitian in the hope that she might be able to advise me on how to develop an appropriate diet.  After explaining to her some of the issues that an ileostomy created when eating, she threw her hands in the air and cried, “just eat healthily!”

I never returned.

Earlier this year I saw Margaret’s advertisement in the “Ostomy Magazine” and hoped that perhaps there was someone out there who understood the complexities and functional limitations many ostomates experience when trying to maintain a balanced diet.

Margaret has indeed a great understanding of all those complicating factors.  She is an excellent listener and her practical insights and advice have been spot on.  Most importantly, I believe, Margaret tailors her advice to fit with the particular lifestyle, tastes and circumstances of the individual.

I am eating better than ever, am attempting new foods and recipes and now feel more energised and am able to “squeeze” extra miles out of each day!

I fully recommend this service to anyone who is concerned about his or her diet and how to best meet the specific nutritional needs of an ostomate”.

September 2017

65 year old female with an ileostomy preparing for reversal

“After suffering for years with a barely functioning large colon, having ostomy surgery gave me my life back!

Becoming an ostomate put an end to painful and acutely embarrassing episodes in hospital with severe constipation where I would be treated like I was just a nuisance patient who should just take some laxatives and get over it. I eventually found a surgeon who did a colonic transit study and diagnosed slow transit constipation. The nerves and muscles in my colon were shot!

The only way that I could avoid pain by this stage was to take dangerous amounts of laxatives and stool softeners, which left me hugely embarrassed and, incontinent. Basically, I could not leave the house. So, I was delighted when my surgeon suggested an ileostomy, with the plan being to eventually remove the large colon altogether and to connect the small bowel just above the rectum. That was almost 7 years ago.

I was so pleased by the freedom that my ileostomy gave me that I began to think seriously about whether I actually wanted to take the next step. My output was very watery, and despite almost daily input from a dietician, this seemed to be the way things were going to stay. While watery output was quite manageable, I was quite fearful that a reconnection would just leave me back in the world of incontinence, and I wanted to live my life!

At that point, a family issue meant that my planned surgery had to be postponed. With more time to think, I decided that the risk of incontinence was too great, and that I wanted things to stay just as they were. So, I opted to forget about the rest of the surgery and to concentrate on enjoying my life.

And that is how things would have stayed but for the emergence of quite a large hernia. I went to see the surgeon quite ready to argue that he should just fix the hernia and leave me be, but, as I had developed Follicular Lymphoma in the intervening years (fortunately not causing me any issues so far) he was quite convincing about the risks of leaving an unchecked bowel in situ.

Basically,  the risks in not  having a reversal were more serious than having it. I couldn’t argue with that, but my previous experience of incontinence weighed heavily. I didn’t believe my GP or my specialist when they brushed off my concerns with: “You’ll just need a bit of Gastro Stop”, “Don’t worry, we can always try a pacemaker”.  After all, they weren’t seeing me with a bag full of liquid pressed against my stomach most days. I just couldn’t see how this was going to change. The nutritionist that I had worked with had tried hard, and promised a lot, but to no avail. How was this going to be any different?

And then, someone at the Queensland Stoma Association reminded me about Margaret. I was away when she visited Brisbane last year, but the reports were very positive….and I had nothing to lose…… Just two Outreach consultations later, and I am feeling quietly optimistic. Everything that Margaret has suggested has made so much sense, and in just two weeks I can see that I can do so much more with diet than I had ever imagined.

It’s such a shame that I didn’t get to talk with Margaret years ago, as the prospect of a re-connection would have seemed much less daunting. I will definitely enjoy the next few months now as I am no longer fearful of what the surgery might bring.  I can, at last, see that the surgery in October might not be the end of my life as a continent person!”

April 2018

70 year old male with Ulcerative Colitis - feeling fitter and more confident

“I am a 70 year old male and some 40 years ago became an ileostomate following 7 years of Ulcerative Colitis. Of course way back at the time of my op, the idea of living with a bag came as a shock but I’ve learnt how quickly we adapt and life returns to normal.

Getting used to the various appliances and coping with the odd hick-up is all part of the game and, being a practical person having spent a career as an engineer, I have a fascination with the technology. Many appliances are great but many don’t suit so it’s a matter of figuring out what works best.

Some 25 years ago I developed a persistent pain in my tail end and, following much consultation with the experts and my own research, the diagnosis arrived at was a delayed reaction to the original op – not unusual with scarring and the resultant nerve damage. With some understanding and daily meds I have learnt to live with my ‘pain in the bum’ and life goes on.

As I drift into later life and things change, I have become very aware of health issues, in particular diet and fitness. So browsing through our Ostomy magazine I came across a very interesting article by Margaret and decided to follow up with several online chats.

I found Margaret to be very friendly, knowledgeable and empathetic with great subject expertise and, with her help, managed to pin point many health issues and deficiencies in my diet. With a more balanced diet and attention to hydration and supplements I feel fitter and have more health-confidence looking forward. I look forward to maintaining contact and gaining more knowledge from Margaret in the future.”

Tony Nelson, NZ
April 2019