Real Life Stories
Meet Jen
Can you tell us a little bit about Han?
It is very hard to summarise Han because there’s so many facets to his personality. He was a voracious reader, he loved the outdoors, he climbed, he skied, he swung off Wind Turbines for a living, he was part of the Mountain Rescue team, he had just completed an advanced course and was qualified to prescribe which he was super proud of.
He was adventurous and sought out new experiences, cooked from medieval cookbooks because it sounded fun and went through a phase of fire breathing and circus performance… he just loved life, and found it all so damn interesting.
Let’s not forget he was my brother and drove me absolutely bonkers sometimes, he was prickly, stuck his head in the sand often and liked to retreat into a book when he couldn’t be bothered with people. He trod his own path which often wasn’t always the most direct, or the easiest but he absolutely owned it and had some incredible experiences along the way. He was a one of a kind and we love every obscure part of him dearly.
How did his diagnosis impact you?
I was so utterly naïve. Han was diagnosed in late January/ early Feb 2020, just before the pandemic started. There’s so much hope at the beginning when he was first diagnosed and immense trust in the medics that they know what to do and that his body would respond well. Maybe they caught it early enough, perhaps it’s a ‘good’ cancer that will respond well, surgery will remove the main tumour and chemo will sort the rest. Bish, bash, bosh – we’ll be back on the slopes by Christmas. I was so wrong.
Pretty quickly it became apparent that it wasn’t early enough, that it had spread, then when the first round of chemo didn’t work I think it really hit me. I was so intent on supporting Han in any way I could that I didn’t notice how much I was struggling to deal with my own feelings. I was devastated, I hadn’t ever considered that there would be a time in our lives that I wouldn’t have him there.
Covid had a huge impact on his treatments as well, each appointment he had to go in solo, and each appointment was more bad news and either his wife or I would be sat in the carpark waiting and worrying.
The added pressure of Covid and shielding really impacted the whole family. Our parents couldn’t visit as often as they’d like, Han was stuck at home for the majority of the 10 months he was sick with very few visitors as we all navigated the pandemic. I worried about his mental health as well as his physical health, I went into isolation so that I could continue to visit and at least then he would see another face.
Watching him deteriorate and being completely helpless has been the most traumatic experience for me. From a strong, fiercely independent lad to a frail and fragile shell in 10 months. Having to watch him endure debilitating treatments, operations, loss of dignity, loss of autonomy of his body and trying to work out when was the right time to speak up and fight his corner, it was exhausting. I often think that the word traumatic sounds so dramatic, but I have come to terms with the fact that it’s the only word that really sums it up.
How do you cope?
Poorly to begin with. I had a lot of times when I cried in really inappropriate places – at work, in the supermarket, driving etc… It turns out I am a catastrophiser, my thoughts spiral and I automatically look to the worst-case scenario. Unsurprisingly this wasn’t helpful or productive. Cancer Support Scotland provided me with counselling while Han was ill, and this provided me with an outlet for my fears and worries which made me feel more able to support him.
The months following Hans death have been erased from my memory. I must have been on autopilot, I guess it’s a coping mechanism. I know I had nightmares, my sleep was really affected so that won’t have helped my memory either. I went back to Cancer Support Scotland for more counselling around this time, I don’t remember it but I’m sure it was helpful.
Han was a huge fan of meditation and used it a lot when he was feeling anxious – (scanxiety anyone?) and I’ve taken this on board and aim for a few meditations each week. It really helps. I’ve also gone back to the gym, my poor neglected body needs some love and attention.
Grief is a tough one, and experiencing loss and grief in a pandemic is difficult because the usual routes of speaking to your friends, being with your family, going out, having distractions – none of this was possible. If anything, the lack of distraction put a massive magnifying glass over my grief and I have felt every single painful moment of it. We support each other in our family, we talk about Han often and with such love but we haven’t been able to see each other as much as we would have liked. I hate covid as much as I hate cancer.
Launching Bing Bong Mail was a huge release for me and helped me in many ways – I could share Hans story and keep his place in the world, I could share the cards I made for him with other people too and hopefully make someone else smile, or help open up tough convos for other families. It’s a place to speak about his experience from my point of view, how caring for someone doesn’t need to be done with kid gloves, that they are still people who need to vent without fear of judgement, who need someone to fight their corners when they’re too sick, and educate people on how to speak to people who are terminally ill. So many people don’t know what to say.
It is also a platform for me to talk openly and honestly about how I am coping, some days are good, some days are not good at all. I know that the shared experiences from other people in the cancer community has helped me through some really tough moments and I hope that I can do the same for someone else.
How did you support Han?
Aside from chemo runs, picking up shopping, speaking to Macmillan, researching best practice for food, ostomy care, finding new high calorie things for him to try etc … it was humour, really dark humour that kept us going. We are jokers, we use humour in inappropriate situations, we shared memes daily, the darker the better. I’d scour the internet for memes to send him each day for morning drugs and coffee time.
I also made Han cards through his illness to cheer him up, they were irreverent and of the moment. To begin with they were all ranty, protesting cancer and the associated shitshow that came along with it. As his treatments progressed they became a way to take the piss out of the situation because ‘get well soon’ was never going to cut it. He wasn’t going to ‘get well’ and ‘soon’ was something we didn’t want to contemplate. What the cards did do was open up a lot of really difficult conversations for us, by using humour to approach terrible moments like chemo or catheters it allowed us a safe space to talk feely, and we did. Han and I were close before cancer, but not in each other’s pockets. Cancer brought us closer, and softened Han too.
Can you tell us a fact about yourself?
When I’m not being ridiculously honest via Bing Bong I am a calligrapher and I have a pen obsession verging on unhealthy.
Are there any accounts or support networks you would recommend to others?
The Bowel Movement obvs!
I have a few Instagram accounts I would recommend for men facing cancer – men don’t talk about it as much as women, I wish Han had more support from other men going through something similar but he wasn’t a group therapy kinda guy, though he did very well with dark humour and his little sister playing the clown.
@battlingboris
@The_enlightened_arsehole
@bowelbloke
@the_cancer_club
@cancer_lads
@thecancerpatient
For Cancer Support – the biggest advice I have is reach out, you don’t need to do this alone but these are the ones I found helpful.
@cancersupportscotland
@nevertooyounguk
@macmillan
For grief
@thegriefcase
@goodgrief_uk
@siblingsgrievetoo_
@goodmourningpodcast
Is there any advice you would give to a sibling?
It’s going to be tough, you are their ally and may need to step up to be their advocate. Be supportive, respect their boundaries but don’t be scared to have those difficult conversations and step on a few toes. They’ll likely speak more honestly with you than anyone else, let conversations happen even when it's really awkward and you don't know what to say, they need you. Spend time with them just hanging out, let them rest, do their washing, cook their food - don't ask, just do it.
Reach out for support – find the charity that fits best with you. Some people prefer Macmillan to maggies, Marie Curie to Cancer Support Scotland, there’s Shine, Never Too Young, Cancer Research… so many, so find your local centre and make time to turn up. Ask questions, cry, drink tea… there is so much support available and you will need it.
Most of all, tell them you love them and hug them as often as you can.
Meet Calum
Hi I’m 37 years old and usually a fit firefighter.
In February ‘21 I noticed a bit of blood in my stool as I went to the toilet, it wasn’t a lot just red streaks within my stool but luckily I noticed it (at first I thought it was something I’d eaten) but I kept an eye on it and it was every day, looking back I had the odd occasion of needing the toilet late at night as well as my usual routine of mid-morning, and my stool changing to a cow pat consistency, I looked on NHS direct website and it said to wait 2 weeks before seeing a GP, I did exactly that and called to make an appointment.
I went for my appointment at the Dr’s and had the embarrassing checks done, but that embarrassment was only on my part as the professionals see and do this kind of thing daily, my Dr initially thought it would be piles but couldn’t feel any so sent me for my bloods to be checked and to do a fit50 test which is a stool sample…
I went straight to the blood taking and 3 days later received a phone call booking me in for a contrast CT scan and flexi-sigmoidoscopy two weeks later.
That day came around quickly, luckily both on the same day but I had to attend on my own (Covid restrictions) I went for my CT scan first, had a contrast injection in my arm a short scan but the contrast gives you a sensation of wetting yourself! Then round for my flexi-sigmoidoscopy (camera up my bottom) I was anxious about this one, I had to do a prep which clears you out ready for the camera, I went in and decided on just gas & air (never again) the procedure was uncomfortable and I think the amount of biopsies that were taken added to that, I was there for about 40 mins and the Dr asked if she could talk to me, those dreaded words that changed my life! “It’s highly likely to be cancer!” The walls closed in, I really didn’t expect it, I thought it was still piles!…
My wife came to collect me and the Dr spoke to her explaining everything before she saw me, our worlds had crashed down on us!
I still needed a colonoscopy to check my upper bowel and this was the week after, more anxiety! I did this part with sedation and it was far easier and more comfortable! Luckily that was clear!!
How do you cope?
I started to try and look at the positives, I had keyhole surgery, no stoma, only one lymph node and hopefully the added benefit of chemotherapy will help attack anything else. So for what I thought was early or stage 1/2 was now T3N10, but if I hadn’t had that one node I wouldn’t be having chemotherapy and I kind of wanted to throw everything at this. I’ve also started to watercolour paint and sketch through lockdown and this has helped, I also really enjoy cooking and playing the guitar, I feel hobbies are a great therapy when going through cancer treatment.
The advice I’d give anyone is;
listen to your body and get to your GP ASAP, don’t be fobbed off, if you’re not happy ask for a second opinion.
Any questions write them down, there’s so much information to take on.
Do NOT google anything!!
Start to write a diary as soon as you’re concerned, days merge into one and it’s helpful to look back on.
I find it helpful to be open and talk as much as possible.
Accept help when needed.
There’s no such thing as a silly question.
Literally take each day as it comes.
There’s some great support out there:
Bowel Cancer UK (forum on their website)
Macmillan Specialist nurses
Instagram (I have a great following who is always check on me)
Never Too Young (forum on Facebook)
The_bowel_movement
The_ Cancer_club
Something_to_look_forward_to
The_treatment_bag
Meet Emily
I was 39 when I was diagnosed with stage 3 bowel cancer that had spread to 5 lymph nodes and surrounding blood vessels.
My diagnosis was a bit of a battle to be honest - like so many other young people and throwing covid in on top of that meant further delays.
I started noticing bowel changes after my second son was born as I had increasing urgency but had put it down to a weak pelvic floor. I was also incredibly tired which again put down to having had a baby and wasn’t getting much sleep.
I went back to work when my son was around 11 months old and had started showing other symptoms such as abdominal cramps and bloating after eating. Then one day at work I had abdominal pain that came on so suddenly it was so painful I couldn’t stand up but this eased away. I had also started noticing mucus and blood in my stools at this point. I went to see my GP who did refer me to the gastroenterologist at my local hospital but not on the urgent two-week path.
This was Feb 2020 by this point and I had a telephone consultation in March with the gastroenterologist who was convinced my symptoms were haemorrhoids having had two children.
The blood tests from my GP didn’t show any anaemia but the stool sample showed inflammation that was off the chart. The gastroenterologist also thought the other option could be the onset of ulcerative colitis. At this point covid has struck so the department were only (ironically) doing cancer screenings so they said we should watch and wait until they could do a colonoscopy.
My symptoms got worse and worse over the coming weeks so I was put on medication for colitis. Another stool sample showed the inflammation was coming down but I was not convinced. I had a feeling it was something more sinister. I was losing so much blood every bowel movement and was having to go so frequently I could barely leave the house. If I did take the kids for a walk I was constantly having to dive in bushes. It was awful.
I was so exhausted at this point I could barely get out of bed. I remember calling my GP and screaming down the phone at them “is this bowel cancer? I’m losing so much blood?” They kept reassuring me it wasn’t. I had also been referred for an ultra sound on my uterus to check it wasn’t a complication from my c section. This was June by this point. At the ultrasound the sonographer found an abnormality on my ovary and noted how gassy I was. She told me to harass the endoscopy department. She gave me the push I needed and I rang every couple of days until they had an appointment.
On July 13th 2020 I had a flexible sigmoidoscopy with the gastroenterologist who had told me it was piles. The room fell silent when the tumour appeared on the screen. I can vividly remember every minute of that procedure and what followed. Due to covid I was by myself which was horrendous to be told you have cancer.
I had a high anterior resection on August 20th then 6 months of CAPOX chemotherapy which I finished at the end of March 2021. I have just received my scan results showing I’m currently NED.
Advice for newly diagnosed is don’t google stats! I was told not to and still did it and it’s so not helpful.
Accept help - my friends and family were incredible and literally swooped in with food, helping with childcare etc.
Look after your mental health throughout - I asked for all the help I could get from the NHS - a clinical psychologist, dietician, physiotherapist.
Trekstok and their exercise programmes were great. I would definitely recommend.
I also did a makeup session with Look Good Feel Better which was fab and you get loads of goodies
Penny Brohn have also been fab for integrative approaches and have loads of online courses as well as 1 to 1’s with doctors and dieticians.
Interesting/funny fact… argh I’m so bad a these!!
I used to work in TV and met my husband when we both worked on Deal or No Deal.
Or I’m climbing Kilimanjaro with some other bowelies in Jan 2022 to raise money for Bowel cancer UK.
Positive mindset has been huge for me. It took me a while to get there but it has definitely helped me to face this head on. I’ve thrown myself into exercising and getting the most out of any opportunity that comes along (like climbing Kilimanjaro!)
Meet Emma
So my route to diagnosis my symptoms started last July 2020 but back then I didn’t think it was anything serious which I think I can speak on behalf of most of us newly diagnosed. I was experiencing blood every time I went to the toilet especially when wiped it was fresh red blood and I can always remember someone saying to me if its fresh red you’ve burst a blood vessel by straining too much (terrible to believe that I know) so at the time I didn’t think much of it, few weeks later it was happening again well to be honest it was month after so late august I was still bleeding but not a huge amount so I thought were going away in a few weeks I’ll see what I’m like and will call GP then, this took us into September and we went away to Woolacombe and I was having the issues there but by this time it worse, I going to the toilet more frequently and even after every meal, and I was also having bleeding when I was passing wind, I was experiencing incontinence because I just couldn’t hold my stool in.
I remember saying to my partner something isn’t right I need a doctor. We got home and phoned my GP and they saw me that day and did an examination and she could see a pile, so I was relieved and happy as I thought nothing serious, GREAT!
She gave me some pile cream and sent me on my way, 2 weeks later I phone my GP again, this time I am having dizzy spells and just generally feeling not myself, also this time I’m cutting out dairy foods as I’m thinking I have an allergy that’s causing my problems doctors agreed it could be that, I mentioned cancer and that bowel cancer is in my family and I’ll never forget my GPS words ( Your too young for cancer) I was shocked!
I said to her NOBODY IS EVER YOUNG FOR CANCER, so after me telling her nothing had changed another appointment was made for me but this time I saw a different doctor and my appt was rushed as someone had collapsed this doctor examined me and said she couldn’t feel anything, but could see a anal fissure so then I was given cream and sent on my way again..... it got to December so bearing in mind I went to the GP first time in September, them knowing family history it took them until December to ring me and ask if everything was still the same, my answer was yes, but by this time I was going off food, and I could feel as if I was sitting on a tennis ball and every time I needed the toilet it felt like I had more that needed to come out and it just wouldn't so the GP referred me for a colonoscopy. Before then I had to give another stool sample. I remember getting a phone call from the hospital and a nurse spoke to me and said were booking you in for a CT scan prior to your colonoscopy just to out rule everything. I asked her about my stool sample and I said was there a lot of blood her reply was “Yes, I can’t believe you haven’t been booked in sooner.”
My colonoscopy was 14th Jan 2021, I was so scared and felt rough from drinking the moviprep which is awful stuff.
I got to the hospital and got took into the room for the colonoscopy and I was given sedatives, and all I can remember is seeing this picture on the screen, and there it was, CANCER!
I knew something wasn’t right I kept saying its cancer isn’t it I’ve got cancer. The consultant told me “Emma calm down all will be okay”, they took biopsies from what they found and sent them away. The procedure was over and the consultant said to me have you got a partner with you and asked if I could call him to come in. I knew then it was bad news.
My partner came in with my then 1 year old where we were all told what they saw on screen was a tumour in my rectum. My whole life came crashing down. I was speechless. My partner was lost, my little boy was running wild like they do at that age, and I remember saying I’m going to die, I’m not going to get married, I’m not going to watch my little boy grow up this can’t be happening. I was so scared
On the 27th January 2021 I was told that it was definitely cancer and what my treatment plan would be, chemoradiotherapy. Chemo was tablet form for 10 days, mon-fri and radiotherapy mon-fri for a solid 5 weeks.
I started on 22nd Feb and finished 26th March and my god wasn’t it exhausting and very, very, very painful. I needed radiotherapy to shrink the tumour so my surgeon could be guaranteed to remove it all when I eventually had my op.
I finished my treatment on 26th March and I got to ring that end of treatment bell and I was so relieved. I was exhausted and emotional and very sore. Going to the toilet was unbearable I’d have to scream into a towel as the pain was that bad. I hated going.
After treatment I was left for 6 weeks as they say treatment still works, so me and my partner decided to go away in may just to take my mind of things and just enjoy family time as it’s been so tough for us all and especially me. We went away to Devon for a week and had a blast enjoyed every moment!
Week commencing May 10th and my scan was Monday morning, MRI scan and then on the Wednesday I had CT scan to check to see if treatment had worked. I was so nervous and hoping and praying that all was going my way, and that i can have an op and have this cancer taken out.
May 27th, I met with my consultant/ surgeon and I was told the best news that the treatment had completely killed the tumour but surgery was still needed as radiotherapy has completely scarred my bottom and that a colostomy was needed. I was so scared about having a stoma I thought I’d never be the same, my body would never be the same. I can’t look sexy anymore for my partner I was devastated it took me a while to come to terms with it.
June 16, I had my op. It was 5 hours long. I had my rectum removed and also a cyst behind my coccyx bone, and my stoma was formed.
I remember waking up from my op, my mouth was so dry I was gagging for a drink, and I will never ever forget my surgeon hand on my mine because her hand was so cold, and her words were “Emma all went well, I’ve phoned your partner he knows you’re in recovery and you're awake”. I got to the ward and I had a message of my mother-in-law asking if I had seen my bag. I replied saying I couldn’t bear to look at it. I was scared. Within 5 minutes of sending that message I looked under the covers and saw my bag. I was expecting it to be full and just horrible looking l, but I was so wrong. It became my best friend in hospital!
My advice to someone newly diagnosed is just be kind to yourself, I really, really struggled if I’m honest which I think anyone would.
I had a young family, and all I kept thinking was in going to die. Just make sure you talk to people, like your family, your partner friends, don’t bottle anything up let it all out.
DO NOT GOOGLE ANYTHING THAT WAS MY WORST ENEMY! I was googling and always thinking and seeing the worse outcome. Macmillan Councillors are very good! I was referred to them and I’ve never looked back. Also making a social media account about your journey because believe me when I say this, I have made so many friends through the cancer community some of which has bothered with me more so than my friends around me.
Accounts that helped me on my journey are, obviously yourselves, never too young, bowel cancer UK. Rach reedy, Nat Woodward… to be honest everyone in this community is bloody amazing and I thank every single one of you for following me on my journey and supporting me when I’ve needed you. So much love to you all!
Meet Donna
My story feels quite sudden and everything seems to have happened very quickly. One day in early April 2021 I was in severe pain, under my ribs, on the right side of my body. I wasn’t sure exactly what I had done but assumed it was a muscular issue and after a few days of rest it went away.
Then symptoms of Jaundice gradually appeared and after five weeks the yellow skin all over my body could no longer be ignored. I was admitted to hospital via NHS111 and my local GP surgery. I was completely stunned to be told that scans showed growths across my liver and a large one blocking the bile duct, all suspecting to be cancer. A biopsy confirmed the growths as bowel cancer, spread to the liver.
Four days after my 40th birthday I had a liver drain procedure and had to negotiate life with a bag on my left side for six weeks. I got used it surprising quickly but I will never take showering for granted again! Then a stent was fitted to internalise the drain and I got infections after both procedures. I am curious to know why some antibiotics seem to have the biggest tablets in the world!?!
After some delay (due to the infections) I am currently receiving chemotherapy treatment and relieved to say that it has started well. On reflection, I can see some symptoms were present for a long time such as blood on tissue paper and bloating after eating but they were infrequent enough to be dismissible as part and parcel of being an adult living a busy life. I do wonder whether, in my case, anything other than screening would’ve identified the cancer any earlier. That is why it is so important to understand what is normal and what isn’t.
Since the diagnosis I have been determined to enjoy life, look for opportunities to try something new and allow my playful side to show. On a whim, my husband and I went on an alpaca walk and had a wonderful afternoon together. Another time, I was online shopping for a duvet cover, was bored by all the same patterns and wanted something different but the only thing that caught my eye was a bright yellow lion cover, designed for children. In the end, I ordered it and it makes me smile every time I see it – it has ears sewn on it!
I always follow a routine and currently have set times in the day when I will do certain activities such as physio exercises, washing up and a power nap. Just after the diagnosis my life was chaotic and the best thing that ever happened to me was getting help from my family, which made me feel very stable and supported. They did a lot for me while I negotiated a new routine. I also highly recommend accessing all support that is available such as dietitians and physios because they have a wealth of valuable knowledge. I would advise anyone to get as much information as possible tailored for your individual needs because we are all different.
My husband and I have received support from a fantastic charity in Devon called Force. They provide a range of services to patients and their families, including counselling, information & advice and help with staying active through and after cancer treatment. We cannot recommend them enough and their support has been invaluable.
Meet Becki
My route:
I caught the coronavirus in April 2020, I was bed ridden for 5 weeks & wasn't recovering as expected. As this was at the start of covid, the Dr's thought my symptoms were down to that. The fatigue, weight loss, reflux, indigestion, stomach pain, bowel never feeling empty, all were mentioned to the Dr & I don't blame them for thinking that as there's no history of bowel cancer in my family & before I got covid I was fine.
I'd got so ill my daughter insisted I went to A & E, I had no energy so she put me in a wheelchair, gave me a bowl to vomit in & booked me in (she'd just turned 18, total star!) I had my bloods & blood pressure taken at which point the nurse said forget triage let's get you a Dr (I think pooing myself helped at this point!) My bloods showed I was missing litres of blood, which I couldn't explain so I had examinations, ultrasounds, scans & 2 blood transfusions that night. I had an endoscopy & colonoscopy early the next morning. Within 32 hours I was diagnosed with stage 2 bowel cancer at the age if 44 years old.
All this happened in a pandemic & my admiration to every single member of the NHS is immense.
Being told you have cancer in a room by yourself by a consultant you've never met wearing a mask & no one to hold your hand is tough. He later told me he had never been in that situation before & it affected him greatly too.
Treatment:
Ten days later I was in surgery having a bowel resection, 2 large tumours, 19 lymph nodes & muscle removed & all through key hole, how blooming amazing is that! To be left with only 5 incisions just amazed me & I felt incredibly blessed but I under estimated how much was done on the inside & recovery was complicated, long & so challenging. Again not helped by any family & friends visiting made it a very lonely time.
I needed chemotherapy so my fighting pants went on & 18 days later my picc line was in & my cycles started, the vile Capox which ironically saved my life 6 months later.
I am currently NED, woo-hoo!! My latest colonoscopy was clear, fabulous, my latest scan showed 'activity' in my liver, not so fabulous, but that's cancer for you, the ups & downs but my fighting positive pants stay firmly on.
Advice:
Be kind to yourself, rest, fight, sleep, exercise, laugh, when you need to, there's no rule book. Talk, share & listen, it reminds you you're not alone & cancer has a great way of making you feel that! I think constantly of the ones we've lost, the ones who are battling & the ones like me who are winning for now. Cancer is never over which is why we must keep supporting each other & sharing our stories, & hopefully with that we can save precious lives.
Accounts that have saved my day!
@bowelcanceruk
@macmillan
@girlsvcancer
@nevertooyounguk
@bowelbabe
@iamnatwoodward
@wildstar_clothing
@thebowelmovemnt
Meet Rachel
Talking all things Stoma reversal
I had my stoma reversed in February 21, after 2 years of cancer treatment and surgery. I am very fortunate to be able to have my reversal and will be forever grateful but I does come with some challenges. The first few months were the hardest, pooing my pants, running to the loo, healing of the stoma wound which was left open so had district nurse visit me daily until it was healed, the pain of this and going to the loo was very painful, I was mooing on the loo going for a poop as pushing to go with a 5cm deep wound was no fun. Slowly things improved but couldnt eat much fibre, anything green and healthy would see me on the loo, accidents and pain. I had a colonoscopy a few weeks ago which detailed I had a narrowing where I was joined up so this is why I have been experiencing pain. When I do experience a painful episode I feel unwell for a few days and it's exhausting. Cancer just keeps in giving and it's never over with. I am now taking lorpemide (an anti-diarrhoea medication) daily and will take more if I eat any fruit or veg, I take supplement drinks from Nourish by Jane Clarke (the chocolate ones are my favourite), I take multi vitamins and have been having support from a dietitian.
My advice would be to get as much information as possible pre reversal, what your function will be, your risk of developing low arterior resection syndrome (Lars) and seek a dietetic referral post op to ensure you are getting enough nutrition in. I do worry I'm not getting enough fruit and veg in but before my diagnosis I ate my 5 a day and still got cancer!
Definitely get things investigated if things still having settled after a few months as I now know my cramping and pain is due to a narrowing, so takes away the worry of cancer. Taking lorpemide daily has definitely helped me control things better and I always carry a change of clothes, wear pads (the thin maternity pads from boots are the best I found) take baby wipes too. I would recommend to access support; I contacted Colostomy UK’s free helpline post op and speaking to someone who has gone through the process definitely helped me. Lastly, a portable bidet is a must post reversal surgery, you poop so much your bum can get sore so definitely a vital purchase to take with you into hospital!
Thankfully any accidents I’ve had have all been at home. I've been covered in sh*t a few times but I have my amazing husband that helps he get cleaned up, you really don't know where to start sometimes!
Things are improving but I still get bad weeks but I got to push through knowing tomorrow is another day and I'm one of the lucky ones to have my stoma reversal.
Forever grateful and blessed.