Real life stories from other ostomates

Jackie is from Bristol and has had her permanent ileostomy since September 2015

This gave me my life back

After two years of struggle following a temporary ileostomy and a second cancer which led to a short colon and severely restricted diet and pain, I agreed to a permanent ileostomy in September 2015. This gave me my life back! There was a little difficulty at first with leakage due to scarring from my first ileostomy but the stoma care nurses were brilliant and soon sorted me out. I was used to changing the bag from my previous experience so that was never a problem.

I was now able to go to social events including the Christmas meal at the pub with my church which I had had to miss out on before. I no longer felt a nuisance if being entertained with a meal by friends as I sometimes had not been able to eat much of what they were preparing. I have found now that I can eat almost anything I want, although I avoid things like nuts and sweetcorn.
Also, some vegetables can be a bit smelly but you discover these things through trial and error – everybody is different.

I’m careful what I eat during a round of golf

I play golf a couple of times a week. I am careful what I eat during a round in case the bag fills before I reach the 19th hole but it hasn't been a problem and I can still hit the ball well (ish!) without having to worry. We go on long walks with pub meals halfway and if I wait for a short while to use the 'ladies' before we set off again, I am fine. I have obtained a radar key and a plastic card saying I am entitled to use an accessible toilet in case I am challenged (as I look so well!), but so far have not had to show the card. My husband and I are venturing abroad this year for the first time after my operation but I have no concerns about managing.

Norman is 80+ years young, from Devon and has been an ostomate for over 12 years

I can honestly say that having the stoma has not altered the way I live my life

I am a keen athlete and have been an ostomate since November 2005, as far as I am concerned the secret is to establish a routine around changing your bag.

Sports & Exercise

I was told by surgeon to take it easy for 6 months, during that time I swiftly developed a routine for dealing with the stoma. After just 6 months and 2 weeks I could return to my hobby of athletics and I even entered a competition in Jersey where I competed in the Shot Put and Discus. Whilst competing, I wear a body belt over the stoma pouch which I find helps with support. I’ve carried on with my athletics well into my 80's winning three medals at National level along the way. I only retired from it when we moved to Devon in 2015.

Travel

My wife and I have been travelling on Cruise ships since 1994 and have not changed our travelling since the stoma. We let the cabin steward know at the start that I have a waterproof and draw sheet on the bed and they always look after me.

Relationships

We have met people where the wife sees herself as the husband’s carer. This should never be the case, the stoma care is a shared experience and is all part of being together and sharing life with your partner - whatever it may bring.

I’ve also found it is important to let children know about the stoma so that they understand not to climb all over you. I showed my grandchildren the stoma bag right from the start. One of the younger ones came up to me later and said "Grandad are you still peeing into the plastic bag" I said yes, he replied "What does your willy do then?", "Not a Lot" I replied…

Sue is 59 years young and from West Yorkshire. Diagnosed with Crohn’s in 2014, following a 30-year remission from ulcerative colitis.

It was time to consider the surgical option

On my third hospital admission on 1st June 2015 it was clear that things were getting worse. My Crohn's had spread and was not responding to any medical intervention. There were no drug therapies left to try and I certainly couldn't carry on in the state I was so it was time to consider the surgical option.

My husband and I talked things over and with his support I made the decision to go ahead with the surgery at the earliest opportunity. With the decisions made things started to move quickly. The operation was scheduled, and the stoma nurses made an early visit to talk me through the procedure and provide me with further information on living with a stoma. I must admit to being more than a little apprehensive at that time, but I am a practical person and I knew that I just had to look for the positives and get on with it because more than anything else I wanted my life back.

I read as much as I could before my op

I spent the three days before my op reading as much as I could about what was about to happen to me. I visited all the relevant websites and made use of the Coloplast stoma care demonstration kit left by the stoma care nurses. The kit allows you to get a post-operative idea of what life with a stoma will feel like which I found helpful as it was a very practical way of addressing some of the worries I had regarding using a stoma pouch.

The surgery went well and I was discharged from hospital seven days later armed with many leaflets and lots of advice on how best to recuperate.

I knew it was important not to overdo things

I expected to have some problems moving around due to the stitches and I knew that it was important not to overdo things because the internal wounds would take time to heal but I thought that once the stitches were out it would be a bit like getting over a bad dose of flu and I would be back at the gym doing light exercises within a couple of weeks and back to full fitness shortly after that.

Well now I know what the doctors meant when they said you will need to take it easy and listen to what your body is telling you. There were days when I would wake feeling fit and well and raring to go only to find that by the time I had washed and dressed my energy had all gone and I was ready for a rest. If I pushed myself to do more, which at times I did, I would end up feeling quite ill. I soon learned that I had to go with the flow and rest when my body told me I needed to.

My fitness levels began to improve

Within six weeks I was able to return to the gym. I was restricted to very light exercise walking on the treadmill and some light weight arm and leg workouts but it was a start and something to build on. Over the next weeks and months my fitness levels began to improve and I could steadily increase the intensity of my workouts by setting myself small targets to aim for. I was also, much to my husband’s relief, able to take back some of the household chores which he had had to take on board whilst I was ill.

To focus my recovery, we started making plans for a trip to New Zealand 

My next target was to get back to swimming. By January 2016 my wound had almost healed fully and I was looking forward to taking my first dip in the pool at Changi airport Singapore on route to New Zealand.

Sue is 59 years young and from West Yorkshire. Diagnosed with Crohn’s in 2014, following a 30-year remission from ulcerative colitis.

Start by taking a short trip in the UK

I had read all the helpful information on the various websites regarding the issues of travelling with a stoma but still had a few concerns which I soon realised could only be overcome by giving it a go. We decided to start by taking a short trip in the UK staying in a hotel for a couple of nights to overcome my misgivings about being able to deal with my stoma routine whilst away from home.

In reality, of course, there is no difference in dealing with your routine whether at home or away and therefore there is no problem, but it was an important first step for me. Also, despite never having suffered any at that time, I was more than a little worried about leakage issues on all the crisp white bedding you get in a hotel, so, just in case, I took along an old towel which I placed over the bottom sheet to sleep on. I need not have worried but again this gave me some added confidence.

I started planning our 8-week trip to New Zealand

Now confident that I could cope away from home, I turned my attention to planning for our extended stay in New Zealand. It meant taking enough stoma supplies to last, plus sufficient to cover any contingencies. Some articles suggest taking double your needs in separate cases to avoid possible problems with lost luggage. I decided to carry sufficient supplies for my entire trip in my hand luggage, which would stay with me throughout, with some contingency supplies being packed in my hold luggage. A letter to my GP explaining my travel plans and prescription requirements enabled me to place an order for supplies in advance and to ensure that it was delivered in plenty of time. Preparations went to plan and on the 4th January 2016 less than 7 months after my stoma surgery we set off for the airport.

I could deal with anything necessary to achieve that goal.

I was both excited and anxious. We were at last on our way to visit our family and to meet our beautiful new granddaughter for the first time but first I had to get through airport security X-rays with a hand luggage bag full of strange medical supplies and wearing the latest Coloplast SenSura Mio one piece ostomy pouch. Do these things show up on the X-ray scanners? Would I get pulled over and searched?

The queue at security was long so I had plenty of time to ponder these issues whilst I waited and as I did I realised that it didn't really matter. After everything I had been through in the last fourteen months what was important to me was that I was there in the queue waiting to board a flight to visit our family, I could deal with anything necessary to achieve that goal. In the end, there were no problems at all. I explained my situation to the customs officer at the screening point and breezed through without any fuss.

The first leg of the flight was around 13 hours

We had a 10-hour stopover in the airport hotel in Singapore. This allowed me to do two things. Firstly, I could take my first swim in the rooftop pool at the airport. Secondly, following the swim, I could shower and change my pouch before embarking on the second 9-hour leg of the flight to Auckland.

Our greeting at Auckland airport was made even more special when our three-year-old grandson, flew across the arrivals hall and jumped into his grandad’s arms showering us both with hugs and kisses. Our three-month-old granddaughter was also on hand to say hello for the first time. It was just magic.

After eight glorious weeks, our return journey was as uneventful as our outbound flight and with hindsight I wonder why I was worried in the first place.

All I really wanted to do was cry, be scared and to talk to someone who I could relate to

When I was first given the news that I needed emergency surgery to have a stoma all I really wanted to do was cry, be scared, and to talk to someone who I could relate to; someone who could tell me honestly what it would be like (as a 30-something with a young family) to live with a bag. The stoma nurses at my local hospital supported me excellently of course, but talking to someone in the same boat as me, was hard to find! I did know another lady locally to me who had ulcerative colitis, and was due to have surgery not long after I’d had mine, so only weeks after my own operation, I supported her and answered her questions from the very limited knowledge I’d gained in the months after my surgery. Subsequently she knew two other ladies who had stomas, so one night we all got together and we talked, and talked and talked.

I floated the idea of a support group to them

I started to think how amazing it had been to talk to other ostomates who completely understood what I’d been through, what I was dealing with and what the future might hold. It wasn’t long before the 4 of us spoke again, I floated the idea of a support group to them and they all agreed how helpful our evening chatting was and how much they had gained from it too. I also spoke to the stoma nurses at our local hospital who were very excited about our little acorn of an idea. In April 2014, our support group of just the 4 of us began. We came up with a name that reflected all the values we wanted and needed to be able to give to other ostomates locally. F.I.S.H.Y.S (Friendship, Information, Support & Help for Young Stomates) was born; our group was specifically aimed at 18-45 year olds in the Derbyshire area, and went from strength to strength. By June 2017 we were more than 85 members, including 10 committee members.

Providing support for 85+ members can be a huge challenge.

We like to keep things open, honest and positive, but it can be difficult sometimes to hit the right balance. Often, we have new members who are scared and worried about their impending surgery and how they will cope.

Our group is so diverse and varied; we have members who are terminally ill, members who are in hospital, members who work or are studying, some who are married, others are single, some have children, some are infertile. The diverse nature of our group means that on any one day, we are providing such varied support. All the committee members are volunteers and many of them have lots of other commitments; their volunteering is simply done out of the goodness of their own hearts and fuelled by a passion for supporting those who've been through similar situations as themselves.

Supporting others can be hard work, but providing this support is also unbelievably rewarding.

The nurses love what we do and appreciate the support we give. Their time is very limited so it’s nice to feel that we can provide a certain level of back up to assist the work of the stoma nurses. The best reward though, is when we’ve supported someone from before they've even had surgery and the idea of a stoma is just so scary to them, then, to see them come through surgery successfully, and find comfort in the information and friendship we provide. A few times a member has told me that they are so glad F.I.S.H.Y.S exists because it made them feel so incredibly normal and not alone! I feel so honoured to be able to help so many people when they are scared and are at their most vulnerable. If my own experiences and consequently setting up the group has been able to help just one person, it makes all the hard work, blood, sweat, tears and pain worth it.

Zoey is 23, World Figure Champion in bodybuilding and had a stoma formed in 2012.

It was one of the toughest decisions I've ever had to make...

Facing any type of surgery can be scary. So when I decided to have my bowel removed due to being unable to control my ulcerative colitis for 2 years, whilst still studying at University, it was one of the toughest decisions I've ever had to make.

Will I ever be able to weight train again?

At the age of 23 I felt heartbroken that I would have to wear an ostomy bag for potentially my whole life.

So many questions came flying into my head and the biggest one was “will I ever be able to weight train again?” I've always kept myself fit playing some sort of sport but I fell in love with the gym after 1st being diagnosed in 2012 - it was my therapy, my outlet. I would go in the gym for 1-2 hours a day and leave my illness at the door.

I made it my mission to become strong again

After surgery, I made it my mission to become strong again, I was lucky enough to have a strong foundation of training before having my surgery resulting in my recovery being successful with no complications. I made sure I saw my stoma care nurses before returning to the gym 12 weeks’ post-surgery to find the correct support wear for my shape & size.

I was extremely nervous returning to the gym, I won’t lie. I had to be extremely careful and listen to my body. If I were to give any advice it would be that it doesn't matter if you're 2 weeks’ post-surgery or 2 years - know your limits and listen to your body. Become aware of your body, and take note of its needs. I may be a pro-athlete but I still must remember I've had 2 major surgeries to my abdominal area, this can be frustrating but it hasn't yet hindered my performance. I'm active 7 days a week and when I'm not training myself in the gym I also instruct fitness classes.

I take pride in breaking down the barriers

Before surgery, I had always wanted to become a fitness instructor but my IBD held me back. I didn't feel as though I was reliable due to constantly being sick, it stripped me of my confidence in every aspect of my life and looking back at the struggles I faced still makes me emotional. But competing & being a part of the fitness industry is a dream come true, with the industry being so image orientated I take pride in breaking down the barriers and killing the stigma which can come with IBD, and having an ostomy.

Zoey became World Figure Champion & 2nd overall winner at the O2 Arena in 2016 for the fitness modelling federation Pure Elite.

Zoey comments: “Never let your ostomy define who you are, you are in control of your life - embrace the journey and never stop being you!

Rachel is ‘Rocking 2 Stomas ‘  - here she shares her story and how she has found hope to live the future she wants.

I was staring at myself in the mirror looking at my ‘ileostomy’ and my leg bag on my calf from my Suprapubic Catheter (SPC) and I was full of fear and the unknown...
It was the start of the summer and that morning I was told the results of my routine ‘cystoscopy’ (investigation of the bladder). It was not good news, my bladder was extremely small, damaged and the biopsy results confirmed that the cells had mutated. I had my SPC for 7 years and now there was no other option but for my bladder and lymph nodes to be removed within 2 weeks and a urostomy (medical term ileal conduit) to be formed.
As I stared in the mirror I felt heartbroken, angry, and fearful. I just kept thinking ‘How on earth will I cope with 2 stomas?’ I didn’t even like the ileostomy at the time because it had prolapsed and that affected my body image back then. I knew in my heart I had to have this surgery. There was no other option not only because the cells had mutated and were starting to turn cancerous but I was getting horrific bladder spasms from the SPC that stopped me living and I was barely existing.

So, in June 2015 I arrived at the hospital in a wheelchair and had an 8-10-hour operation in a combined effort by my Urology surgeon and Colorectal surgeon to remove my bladder, form a urostomy and fix my prolapsed ileostomy. My body struggled throughout the surgery but I had amazing anaesthetists and surgeons that got me through. I woke up in Intensive Care Unit and it wasn’t long before I went to High Dependency Unit and then the urology ward.

It didn’t take me long to realise that maybe this was the best thing that had happened to me.

I started to see the glimpses of a new ‘positive’ life with my second stoma. When my Stoma Care Nurse first changed my urostomy it squirted all over her so we named it ‘Squirt’ and I knew we would be friends!
I was about to be discharged after 10 days when unfortunately, I caught Clostridium difficile (C.Diff) off another patient and I was extremely poorly so my stay ended up being 3 months in isolation and I had many interventions to help get me through. Even though this happened I still didn’t regret the surgery.

When it was time to be discharged, I was adamant I wanted to walk out of the hospital (leaning on a wheelchair) and I did. When I went home I slipped on a summer dress that I had not worn for 7 years because I always wore my leg bag on my calf and had avoided dresses! At that moment, I knew I had been given a ‘second chance’ of life again and vowed to embrace both of my stomas because I could see and feel the ‘freedom’ that they had given me.

When I am in the hospital my life doesn’t stop and I make it part of my life and treat it as a mini break.

Seeing the positives and almost making a gratitude list I started accepting both my stomas even the prolapsed ileostomy. When I felt overwhelmed I would think of life before them and how horrific it was and that helped put it all into perspective. Since then I have had other challenges with the 8 failed refashion surgeries for my prolapsed ileostomy and having sepsis 10 times but I try to not let those experiences get me down or blame my stomas. I adapt, and when I am in the hospital my life doesn’t stop and I make it part of my life and treat it as a mini break.

During all those admissions since requiring my second stoma the nurses on the ward would get me to speak to new ostomates which I loved. I realised there wasn’t many young urostomates or many ostomates with 2 stomas. Surfing the internet I found lots of brilliant blogs about colostomies and ileostomies but not in terms of a urostomy or 2 stomas. So, this was when my blog rocking2stomas was born and life has never been the same since!!

I saw how important ‘identification’ was and connecting with other ostomates who just ‘get it’.

I originally started this to help other ostomates not feel so alone and isolated as I had felt but I had no idea how much my blog would help myself with my own journey of acceptance. I found an online community on Facebook that I never knew existed.
Bearing in mind I had my ileostomy in 2012 due to Pure Autonomic Failure and my bowel failed to function, I never thought to search for groups. I saw how important ‘identification’ was and connecting with other ostomates who just ‘get it’. I started getting a lot of messages from ostomates with 2 stomas like me feeling like they were the only ones. I wasn’t even aware before I started my blog that we were called ‘Double Baggers’ I had no idea! After receiving more and more messages, I decided to set up a Facebook group called ‘Double Baggers Support Group’ for anybody with 2 stomas, about to have a second stoma or are family members of somebody with 2 stomas. This is not even a year old and we have nearly 300 members all over the world which is amazing!
Urostomies can sometimes be forgotten about amongst Healthcare Professionals and the public. However, when you have 2 stomas we are even less acknowledged because we have a small incidence in comparison.

Without them (my stomas) I would not be here.

Where I am at today is, I am truly grateful for both my stomas, without them I would not be here but also, I would not have reached this deep level within myself. I worked as an ex Healthcare Professional before my rare illness Pure Autonomic failure hit making my bowel and bladder fail to function normally. Now I am doing a similar thing but in a completely different capacity. Advocating in healthcare raising both urostomy and ostomy awareness and supporting new ostomates have given me back a purpose and drive again.

I am truly the happiest I have ever been but it hasn’t always been that way. I have had dark times but I have worked through them and now come out the other side to be able to help others. This takes time and acceptance doesn’t come overnight but by setting small goals I built up my confidence which helped me appreciate the gift my stomas have given me. Not only have my stomas saved my life but they have given me amazing friends, met fellow advocates, have a purpose again but the most surprising…they even helped me find a man called Steve who also has an ileostomy. So together we are Rocking 3 stomas!!!!

Coloplast  would like to thank Rachel for being so open and honest, Rachel says

There is hope, there is a future and when I embraced my stomas and found gratitude for them - amazing opportunities have come my way.

Returning to work after stoma surgery can be a challenging and anxious time.

Whilst you have been cleared by your medical team to return to your normal lifestyle, your mind tends to overthink everything relating to leaving your comfort zone of ‘post-surgery’ and back into the real work of being a functioning member of society.

Louise kindly shares her story and some handy tips:

I made my return to work in May of 2017. I had spent over a year off work: dealing with my medical condition and then the subsequent two surgeries; the final one which resulted in my stoma being created. I took my time recovering from all aspects of my surgery, a luxury I know many can’t or don’t afford to have. I started a brand-new job, in a new location; so not only was I returning to work but I was also relocating.

From the beginning of the application process, I was honest and open about my stoma. Thankfully, they were very supportive about it and asked of ways in which I could be best supported. I by no means get special treatment but I can work and manage my IBD and my stoma to the best of my ability. My strong will and stubbornness means that I try very hard to do the same as everyone else, despite knowing that I suffer massively with fatigue and pain.

I’ve not had a negative reaction to my stoma or my condition.

I initially worried a lot about what everyone would think of me, as they probably didn’t know who I was nor why I decided on this role. But I’ve always actively discussed my IBD and having a stoma hasn’t changed that any aspect of that; I still wanted to find a voice to explain what living with an invisible and chronic illness was like, as well as living with a stoma. So, I didn’t stop talking about any of it at work. I didn’t want to hide, so I learnt to gauge people’s reaction and whether to say more or to let them come to me and ask things. And for the most part, I’ve not had a negative reaction to my stoma or my condition.

With regards to my job; I have access the disabled toilet on frequent basis, I can take time out to change my appliance which is comforting to know, and had only happened a handful of times in the time I’ve been there. I am allowed time for my hospital appointments and my medication schedule too.

About four months in, I had a sudden and big flare up of my Crohn’s Disease. I was admitted into hospital on numerous occasions in a six-week period and had a total of 9 weeks off sick. During this time, I worried constantly about losing my job and not being able to pay my bills. This wasn’t the case at all, I re-returned to work in October on a light work schedule and worked my way back to being full time. The support and understanding I received then, and continue to receive from my employer and colleagues is humbling.

I won’t lie; working whilst having a stoma isn’t always perfect and it is challenging at times. I’ve found that my biggest obstacle is that I still feel guilty for being off sick; I know I am not to blame for missing time at work or for being unwell. It happens to us all, just more frequently to me. Having an employer who is understanding and caring about your circumstances is helpful but also having colleagues who also understand helps too. It means that they notice when I am missing and notice when I am unwell at work too. Having people on my side, it makes life a little bit easier.

So here are my tips about returning to work:

- Be honest and open about it, as much as you feel you can.

- If you are returning to your former role, ensure you can return on a phased time scale adjusting to a new routine is difficult to begin with.

- Nerves about returning are normal!

- Pack extra supplies so you can change your appliance at work.

- Speak up if you need help; there is no shame in it, and suffering in silence will only hurt you; mentally and physically.

- Remember that you have just had surgery! Be it six months ago, a year, whatever, you have a different lifestyle now with less bowel!

- Take your time to work back to full strength / capacity. A good employer should respect you and not push you too hard too soon.

- It is okay to not do everything everyone else is doing. As long as your agreement with your employer makes you happy and comfortable, this should be all that matters.

- Please be careful and take care of yourself. Stoma’s are unpredictable at times and things can change in hours. Be aware of dehydration, blockages and sickness.

- Enjoy your new lifestyle! Enjoy your new lease on life!