Ulcerative Colitis, Life Changing Surgery, and the journey in-between.

Life isn’t just about what happens to you… Ultimately It’s how you respond!

Here goes a vulnerable, honest and raw blog that I wasn’t sure if I would share. However I feel that often we are put in these situations where sharing isn’t just for the person going through the “event”. It’s an opportunity for those around us to learn and engage in what that person is going through too.

What I have been through is nothing short of a sh*t storm, and for some there is currently too much of a negative stigma to this topic.

I’m here to change that!

I dip in and out so hang in there. It will all piece together in the end.

If your here for the ride, grab yourself a brew!

Please… Be Kind❣️

Trigger warning. There are images that may be triggering, or a little squeamish for some. View images at your own discretion.

As many people may or may not know I have had a rough time with Ulcerative Colitis over the last few years.

I was given a pretty prompt diagnosis considering the timing was during covid when it was almost impossible to be seen by a GP.

When I called my GP and explained my symptoms, they made me a physical appointment straight away. I had to have a rectal exam, stool sample, blood test, and swabs. I was put on a tablet called mebeverine whilst we waited for my results. Mebeverine is similar to buscopan and is often used for patients with irritable bowel syndrome (IBS).

IBS & IBD are not the same thing! Huge misconception.

Although stool samples aren’t the most pleasant things to do, they are very important. A stool sample is used for a test called a “Faecal Calprotectin test”. This measures the scale of inflammation within the bowels. They say that a reading below 50 is normal.

Mine was over 6000! I was bleeding, I was passing blood clots, mucas, and was running to the loo anything upto twenty times a day.

I’d be at work on a teams call and have to swipe my camera off and run! I‘d have stomach pain so bad that the GP said I looked like I was in Labour.

The bleeding was bad and I’d still not received a referral to be seen by the hospital, so my GP requested a two week wait appointment. This is a request for urgent investigation.

I had to wait 5 months!

My GP was amazing. I had a couple of follow up phone calls whilst waiting for the appointment to come through and she told me that as grim as it may be… keep a photo diary of anything that was coming out of me that isn’t “normal”. We called these my Sh*t pics. You’ve got to keep these things light hearted after all.

I only recall becoming ill and suffering with symptoms after I’d had covid for a very rough 3 weeks.

Although there is no known cause for developing bowel disease, it is often diagnosed after a bought of your immune system been lowered drastically, triggering a dormant underlying disease.

It can also be dropped through a family bloodline. However to this day there is no definitive reason as to who gets IBD and why.

My symptoms started after I had covid. Prior to that I was a very healthy gal! But I suppose we will never know the actual why!

Now… let me tell you when you get something like this people like to put in their two pence and believe me I’ve heard it all!

Change your diet, take aloe Vera juice, do fasting, take supplements, work out more, live healthier, eat organic!

There is no cure for IBD.

There was actually a recent talk in the House of Lords regarding Chrons and Colitis, and a medical speaker (a lead gastroenterologist) said and I quote” They have something that is worse than cancer”! “Because it’s incurable, it is lifelong, and it is hidden from the public gaze”! “If they could see what your insides looked like they would understand”. “Early diagnosis is absolutely key”!

Believe me when I tell you there isn’t anything I didn’t try, to attempt at getting rid of my symptoms. 

I had to do a 3 month food diary, logging every speck of food I consumed, measuring the amount of liquid intake I had daily, eliminating foods that were triggering symptoms, supplements… you name it i’ve tried it.

Pre-biotics, pro-biotics, gut friendly bacteria’s, juice cleanses, fodmap diet, low fibre diet, low residue diet.

It got so bad I had to eliminate complete food groups out of my diet. No vegetables, no fruit, no salad, no dairy, no peanuts! Beige was the only food group stopping me flaring.

This then made me iron deficient, my immune system weak, body shutdown, poor sleep, weight gain, hair loss, it wasn’t nice, and it wasn’t a life!

Finally I had a letter through from the hospital and I was scheduled for a colonoscopy. I was shown at this point to have a Calprotectin of over 3000, and Proctitis (ulcerative colitis isolated in the rectum). I was started on Rectal enemas. These worked for a brief period of time… but just that.

I ended up back and forth to the hospital where I was now under the care of the IMIC team (immunology). This team were amazing. You could pick up the phone to a nurse or email them if you were deteriorating, or became symptomatic.

They had me in for blood tests, more stool tests, X-rays and monitoring. I’d now over a period of a few weeks decided to stop eating much at all.

If I eat, I get pain. I now associated food as pain. Food also meant that I’d have to go to the toilet. I then stopped hydrating enough and within a matter of two weeks of this I had lost around 10lb in weight, my eyes had sunken and gone dark, I wasn’t sleeping, and I was flat out exhausted. I spent 5 weeks very poorly and unable to sleep in my own bed….

…As our bathroom is downstairs and I was needing to go within a split second going to bed meant I’d have an accident (I’d sh*t myself)! So after falling down the stairs and into a radiator, it was time to sleep on the sofa. I was there for a month!

I was put on steroids. A high dose of predenislone and I was non responsive to these. They just gave me moon face! I mean the weight gain and water retention is another level. So now not only am I trying to avoid having an accident, I now look like Violet (the blueberry chewing gum girl from willy wonka)!!!

After another few months I was still no better (and might I add working during the interim period, barley getting by without many knowing). I was eventually sent for another colonoscopy where it showed my Proctitis had now escalated to Pancolitis (colitis of the entire colon), and my Calprotectin was sky high again.

This time my consultant wasn’t sending me home. I was admitted to a ward where I ended up staying a week. This was my first ever hospital admission in my life. 😬

I was been weaned off oral steroids, and put on intravenous steroids (hydrocortisone), until it was decided that I needed to be put on a biological medication called Infliximab.

Infliximab felt scary to me. It has to be administered intravenously every 4-12 weeks depending on your dose. It required safety bloods prior to the treatment. But it could mean remission. Remission is a term used when your symptoms are in a manageable state and your meds are keeping you ‘well’.

Unfortunately after a whole year of feeling good and been in remission, I started to get unwell again. I developed antibodies to Infliximab.

I had already trialled other drugs inbetween the steroids and Biologics but they all gave me pretty grim side effects.

They decided that I should try a cytotoxic medication called Methotrexate. Methotrexate is a form of low dose chemotherapy and is administered via auto injection pens.

This sounded like another scary drug, and wasn’t a decision I was allowed to make on my own either. This drug has or can have side effects that may affect your future such as the conception of children. Therefore I needed the conversation with at this point my husband to be.

His straight answer was ‘have it’ your not well and to even think about children… you need to be well!

This was my miracle drug. Finally. I felt better than I had done in months. I had 16 weeks of injections until I had to stop taking these. We wanted to think about having children and to safely conceive you had to wait for a recommended 6 months after your last injection. This was also something that couldn’t be taken during a pregnancy, therefore just a temporary fix, as there would be potential flares during a pregnancy. Therefore I was taken off it and put on yet another Biologic called Vedolizumab (Vedo).

I had 14 weeks of Vedo and my symptoms were let’s say tolerable. I had learnt to tolerate my symptoms. I was now being defiant. I wanted it to stop taking control of me.

I resorted to wearing adult diapers to go out in because I didn’t trust my bowels, but I didn’t want to cancel plans.

I’d avoid eating lunch at work and only eat toast for breakfast so that my stomach wouldn’t be upset during the day. Then I’d eat a ‘normal meal’ for my tea and suffer all pain and symptoms during the night so I wouldn’t miss work.

Defiance lasted from the August to the September (I didn’t last long) when I was sofa bound again for another few weeks. I was put on more steroids even though we knew I was non responsive, I think this was a “buffer” until another option was made for treatment.

This meant that on my honeymoon I was on 14 tablets a day, unable to have an alcoholic drink (too much), I lived mainly off chicken legs and mini omelettes during my honeymoon. There were nights that I was up running out of bed to the loo. Wide awake for hours on end. I had days where I did have a little drink and “normal” meals, but I’d find myself speed walking away from the dinner table then darting across the resort to the toilets.

Despite all of this we made the most of the honeymoon, it was still absolutely amazing, and we fell in love with Cape Verde. So much so we’re going back this December… But this time I can eat more, have a drink, and book a boat trip.

I didn’t dare book any trips last time because I didn’t know what the toilet situation would be. So I cannot wait to go back, go all out and do it right this time. How it should have been. In one of the most beautiful places I’ve ever been, with my better half.

After going through the entire cabinet of medication options available, immunosuppressive tablets, steroids, IV’s of Biologics and iron, Injections of cytotoxic drugs and my body rejecting each and every single one of them.

Medications that I was put on for reference;

Salofalk

Pentansa 

Mezevant XL

Azathioprine 

Budesonide steroids 

Prednisolone steroids & Vitamin D

Iron infusions

Infliximab Biologics Infusions

Methotrexate Cytotoxic Injections & Folic Acid

Vedolizumab Biologics Infusions

With some of these medications, they require weekly blood testing, blood testing for safety a week before Biologics, blood testing for liver or kidney damage. Regular stool samples to check for inflammation.

With steroids comes a huge increase in appetite and heavy water retention which results in a moon face and weight gain.

Insomnia. I had this for 9 weeks straight and let me tell you been awake for 22-23 hours a day results in hallucinations, mood swings, low mood, and much more, but if someone tells you they have insomnia, this doesn’t mean they missed a few hours sleep. It means they’re not sleeping and it effects been able to function at all.

Fatigue, joint issues, rapid weight loss, then rapid weight gain, and hair loss.

These are all things I endured constantly over a short 3 years. 

When people talk about fatigue, they’re not talking tired/sleepy. We mean we literally cannot function. It takes every amount of energy to get ourselves out of bed and to get dressed. We are running off thin air, just to do basic tasks such as brushing our hair or teeth, fatigue is not tired, it’s a challenge to make it through the day!

Going through that is debilitating in such a way it’s traumatic on both mind and body. These things don’t go away overnight.

Things for me such as the hair loss. This happened at a time where I should have been really excited. My wedding. By the time my wedding came I had lost half a carrier bag of hair, through severe shedding whilst on Azathioprine, and this hair loss continued for around 6 months.

It was shock to the body and mine went into shutdown mode. This resulted in me having to have temporary tape in hair extensions to make it look like my hair was full enough to create my dream wedding hair. Not only this but as someone who works in the hairdressing industry this was honestly so devastating.

Other side notes people may not realise is things like been on a cytotoxic medication like methotrexate means that you cannot try to conceive whilst on this drug as it can cause miscarriage or severely damage an unborn baby resulting in defects and disabilities. This therefore delaying us of having children. Not only this but you cannot and shouldn’t try to conceive for a further 6 months after your last dose.

This meant that there was a whole 12 month period where I was unable to think about having a family with my husband, which we did want.

This is one of the reasons you should also never ever ask a couple when they’re having children!

You genuinely don’t know how devastating it is when someone asks you that question and it’s something you want.

Someone recently said to me “oh you would have been a great mother too” insinuating that I couldn’t have children because of the surgery I was having. Having this surgery doesn’t make you infertile. Yes there are risks as there are with any surgery, but please people! Stop doing this. 

It’s fair to say there is only so much one person can take before they get completely fed up. You’re probably fed up reading by now, so imagine going through it day in day out! 

People say things like “you’re so strong, how do you do it”? 

Well…

I didn’t get a choice!

I HAVE to deal with it!

I WAS GIVEN NO CHOICE!

My body was in shutdown and so was my outlook. I was done! Soooo over it all! 

My consultant ultimately gave me two “choices” (I’ll say “choices” sarcastically).

I either go onto a drug that could potentially make me infertile, or I have my entire colon removed and an ileostomy formed (stoma). 

As someone who doesn’t yet have a family of their own this didn’t seem like much of a choice.

After tears, tantrums, going into hibernation, getting angry. You name it I had the emotional breakdown/rollercoaster whatever you want to call it. 

However. I then decided…I’m not a negative person so let’s try to look at the positive side of having an ileostomy.

Firstly health is wealth and within weeks of having my diseased colon removed my health would significantly improve.

Secondly the medicated life would be gone! You’ve seen the long list so you should get it by now!

Lastly I wouldn’t be looking at every calendar event and freaking out inside wandering if I’d sh*t myself along the way!

I wanted Sarah back! The fun Sarah. This disease has taken three years of my life off me!

I’ve missed family events, friends weddings, birthdays, holidays, socialising like a normal human, and work.

Yes I’ve plodded through, that’s just who I am, but it does make me resent the fact I have missed out on so much because of this.

This is also a reminder for a reality check and I’m here to be told off for this also.

Social media is a highlight reel, we show the good bits, the nice things, with the odd sprinkle of ugh!

For someone with a chronic illness behind the highlight reel is tears, excruciating pain, debilitating illness, copious hospital trips, and damn right negative experiences.

It’s not that I don’t want to show these things, but I often think negative things can have an impact on those reading into our posts that we share too, and you don’t know what they’re going through either. I am more about uplifting people and inspiring them, not putting a downer on things.

Check on your friends and family… it’s usually the strong/stubborn ones that suffer in silence!

I’ll fast forward to more recent events.

It was August 2022 and I started with another flare, this started whilst on a friends hen do and it ruined it for me. I just wanted to get home. This flare ultimately didn’t go.

By October I’d been through weeks and weeks of steroids and double dose Biologics and my body was non responsive. So I was given that ultimatum at this point.

In a 6 minute phone call I was told my world would change, and in my head at the time my world had just been turned upside down.

October 2022 I was put on the list for surgery.

April 2023 my surgery date came through the post and reality sinks in.

These are the thoughts that ran through my mind…

I’m going to look disgusting, no one will want to be associated with someone with a stoma bag, am I going to smell, will my husband still find me attractive, will I ever feel confident enough to wear tight clothes, or a bikini ever again. Will I want to leave the house!

I went into a very negative wormhole inside!

Externally was a different story. “I’ll be fine”, “it’s for the best”, “I’m strong enough”.

It genuinely doesn’t matter how strong a person is when you’re told that you need a life changing surgery, you’re bound to have negative thoughts and that is normal!

… I’m going to come back to this later on.

If you’re still reading and you’ve got this far… I appreciate you! Time for another brew?

So we fast forward to June 8th 2023. It’s surgery day.

We are removing a 5ft, 4lb human organ forever. No going back!

I was in okay Spirits I would say. I was nervous. There were tears of the unknown, and I hate hospitals so not my comfort zone.

But…The staff made me feel at ease, my husband was by my side, one of my close friends who is a nurse came to give me a big hug and wish me luck.

Gowned up and marked by the surgical team and back came the tears. Now it’s real. My life and my body will never look the same again.

I walked myself down to the theatre and I was made to feel calm, everything was explained to me clearly. We were joking in the theatre about me thinking I was in the real life “Greys Anatomy”! BIG greys fan girl. If you know, you know!

The surgical team and I were cracking jokes mainly because by this point I was high on drugs, and it was super calm and felt like a safe environment.

I was given a spinal, and a general anaesthetic. The spinal is the best option for such a surgery (total colectomy with end ileostomy). The spinal pain relief lasts up to 18 hours and is very effective for this kind of planned torture. Then of course I needed to be knocked out with general anaesthetic too, although if I could have watched the surgery I totally would have!

I ended up having 6 laparoscopic incisions and a small C-section cut.

The C-section cut was always going to be a maybe depending on the inflammation of my colon when operating. As mine was pretty heavily diseased (Pancolitis) it couldn’t be removed via a laparoscopic incision, therefore a small C-section cut was made.

All went smoothly.

I woke up in recovery after around 9 minutes so pretty quickly. I felt fine, and was talking to the recovery team, insisting on checking in with my husband to see how the house looked with a fresh kick of paint! Haha. Women just never stop!

I was in and out of consciousness throughout the next 24 hours as I don’t remember my husband coming back to see me post op or my nurse friend either. “The high life”!

All I remember is the high dependency nurse giving me my morphine drip button and telling me not to be a hero and press away! 

I only recall feeling pain when I needed to cough as having a tube down your throat will do that, and oh god, turn me off and bury me already! Coughing and hiccups after major abdominal surgery are not the one! Just no.

Waking up and the spinal had now worn off and the pain…

I have a pretty high pain threshold. I mean I’ve been hit and run by a car, broken an arm, had many needles stabbed in me, had a nail through my foot (clumsy kid), and been dragged by a moving car after trapping my fingers in the rear bumper…but this pain. Wow!

Honestly I wanted to die I’d never ever felt pain like it. 

Then incomes the gas pain that no one warns you about.

During laparoscopic surgery you are pumped with a gas that allows the surgeons to move your organs more easily when using their Hydrologic surgical tools. This gas travels up into your chest and wedges into your collar bones, and the only way I can describe it is, I felt like I was having a stroke.

I actually remember pressing my buzzer and telling them that I thought I was having a stroke.

My whole left hand side of my body was numb, droopy, lifeless, and the pain! Well let’s say morphine and dymethicodine were not cutting it whatsoever (I’m probably not spelling these medicine names correctly so just ride with me)!

A nurse came in and without asking me what was wrong, she could see from my blood pressure and the tears how much pain I was in and brought me peppermint oil in hot water. I was like is she joking. She thinks that’s gonna solve my imitated stroke.

Well joking aside I could have kissed her. It was like someone turned down the pain meter from a pain scale of 30 to 10. Tolerable.

Then came the ‘we need you to get out’ of bed less than 24 hours after surgery and we’ll I can only describe it yet again as the worst pain I’ve ever had to go through in my life. 

I cried the whole time that it took me to sit up just to get to a seated position (which felt like a lifetime) at the edge of my hospital bed. I felt like any move I made and my insides were going to explode like a bomb. 

But… I made it. Tough love!

After a nourishing breakfast of three spoons of dry rice crispies I got back into bed and was in and out of consciousness for another few hours. It’s a bit of a blur. 

On the evening I had a wind of energy on arrival of my husband visiting and I wanted to try to get up. Standing. 

Laying in bed after surgery isn’t great and can put you at risk of getting a chest infection, and bed sores.

I mainly wanted to get up because the gas pain eases with moment. Therefore no movement and that pain is gonna stick around, and let me tell you I did not want to keep experiencing that pain.

So steadily getting to the edge of the bed with tolerable pain thanks to me topping myself up every 5 mins with morphine, and I was stood.

It took a little while to find my balance and for those black dots rolling around my eyes to disappear but, I managed to walk out of the room did a lap of the corridor and that was me exhausted for about 12 hours.

I knew I needed tough love on myself and from those around me. I wanted to be up and out as soon as I could. 

So I managed to get up every day from then on and sit in my chair, which was literally 4 steps from my bed, but believe me when I say it was draining. The energy exertion was unreal, but day by day it got easier.

The gas pain stuck around for I would say 2 weeks (way past discharge from hospital). 

I was in high observation for 5 days and then sent to a normal ward for another 2. 

Without going into it let’s just say the last day I was going home whether they let me or not! I needed to go home for my own sanity and wellbeing.

I would like to highlight the patients which I won’t name for privacy reasons, but I could not have done it without them.

There were only four beds on high observation. One lady had part of her bowel removed and a stoma formed, another had surgery to remove cancer, and the last lady had a hysterectomy due to cancer also.

These women were the ultimate girl gang. We were from different backgrounds, aged from 32 to 86, and we did not stop chatting. They were cheerleaders, the tough love sisters, warriors in their own rights and the words of wisdom when you needed it.

One of them even threw a pocket hug at me from across the room (none of us could get out of bed, and I was in floods of tears in pain). Honestly I couldn’t thank them enough for just been epic support, and I hope that in some form I was able to give them the same.

We laughed, we cried and chatted into the nights, and I will be forever grateful to them and I hope they are all keeping well too.

Home time. Packed up with pain meds to bring home, sexy compression stockings, and I was off.

I was trying to run out of that place. I just wanted my own bed, my own privacy, no noisy BP monitors going off all night, or been woken up every half an hour to be checked, I just wanted silence. Silence and home comforts, and most of all I wanted the biggest and longest cuddles with my husband. Home isn’t a place for me. Home is your person! He will cringe reading that ha. But it’s true.

Post Surgery.

Been at home felt so nice but was challenging. Getting in and out of my own bed would be a daily challenge for the next month. 

Needing assistance to get up during the night, just to even sit up in bed I needed help. It was like you had no control, and I absolutely relied on my husband. He was incredible. He had to get up with me and walk in front of me down the stairs so I didn’t loose my balance and fall. We only have the one bathroom and unfortunately it’s downstairs!

I spent the first month at home on bed rest, in my sexy compression socks and taking fragmin injections (eye roll), along with oral morphine, dymethicodine, paracetamol and a shed load of peppermint.

I slept a lot, and mainly during the day. I’m not a day napper usually, but I was exhausted and my body knew what it needed.

Throughout those first 6-8 weeks I had a few challenges.

My organs felt strange. My abdomen felt like a ball of water with things swishing around. Unstable and fragile. Every move was like you’d just done an hours insanity workout 10 times over.

I’d had a couple of occasions where I nearly collapsed at home. Changing my bag and seeing an internal organ on the outside of me, and having to touch it is something I’m not sure I’ll ever get used too.

Whilst in hospital my blood pressure was very low, and it persistently kept dropping. This then happened a few times at home where it dropped so low I lost my sight, my hearing went off and all I could hear was a high pitched ringing, and all I remember is shouting of my husband and clinging to the door handle to hold myself up.

This all added in with numerous wound infections, due to me been allergic to the surgical glue and dressings. A few of my incisions were very angry.

Some were just surface angry. Others were fully open, weeping, raw. The worst one was my belly button. It wasn’t just glued at the incision. Due to the post op swelling my whole belly button had glued shut creating the perfect bacteria habitat for growth.

I ended up having to go back onto the ward to be seen by one of the surgeons who came in took one look and she ripped off the dressing like a band aid. No countdown and I’m glad she didn’t. It hurt but I was grateful to get it off. This meant that that wound was now open and let me tell you it was painful.

I had my insides bulging out of a tiny hole and to touch it, I can only describe it as if you’d badly burnt yourself. It was hot to touch and raw. This took so so long to repair itself, but we got there in the end.

By weeks 6-8 I was able to get up, in and out of bed finally without assistance, and walk the stairs alone.

It was at this point I cried over not been allowed to hoover the house. I mean come on Sarah!

My husband had taken on all of the household jobs as I wasn’t allowed to push, pull, lift or stretch, and your girl cried over not been able to hoover!

It sounds so ridiculous, but I felt like I’d gained a snippet of independence back been able to get out of bed, and felt invincible, but I needed to reign my neck in and was firmly told to stop been ridiculous and rest ha!

So I for once in my life did as I was told. 

At this time I then started to loose my mind. As a serial workaholic and active up and go person, been confined to the house, not been allowed to do things on my own or drive was not good for my mind. 

I found myself staring into space, putting the TV on but not watching it, just staring. Starting a book but couldn’t focus, starting puzzles and going in a daze. I needed to feel a bit of normality so slowly we started to make plans. Just little things I could focus on and look forward to. Like a little walk just to see daylight and move my body. Then the next time going a little further and a little further.

Then venturing to our local cafe for a breakfast date, or having a little drive out for half an hour to just feel normal. 

Car journeys after loosing such a large organ are very different. You know you’ve lost an organ!

It can take around 8 weeks for your internal organs to settle in their new found space. There’s 5ft of capacity that used to be there that no longer is, and every speed bump, and pot hole reminded you of it! Not to mention I now also have an internal organ now poking through my stomach wall externally to consider also.

Anyhow it felt amazing and was so so good for the soul to be doing normal activities however small.

I have had a few bumps in the road along the way post surgery.

Whilst in hospital I had a huge reaction from around day 2 to the surgical glue that had been used to close my incisions.

This meant the nurses had to mark around all of them where the inflammation and rashes had developed. I ended up with four courses of antibiotics one after another post op as nothing was clearing them up.

Around weeks 3-4 was when my stitches around the stoma should have now dissolved.

I had seen the stoma team weekly, and they check on your progression, including how the stitches are looking etc. Turns out mine needed manually removing so I had to grin and bare that pure torture too.

Honestly though the stoma nurses put up with some sh*t. Literally! They’re attending to wounds, and maintenance of your stoma…whilst its bare and bag-less, and they are stood eye to eye in the firing line of output. They honestly need medals, and a fat pay rise.

With an ileostomy, your small intestine is pulled through an opening in your stomach wall, pulled back over itself and stitched back onto your stomach. This meaning you have a stoma (which has no nerve endings), stitched back onto abdominal skin (which has very sensitive nerve endings).

Its an unusual sensation. Especially as an outsider looking in, you would likely think that the part that would hurt would be the pink intestine stuck on the outside. But its not and that is totally free from any feelings.

Been immunosuppressive after taking biologics and cytotoxic medications for a while, means my body takes longer to recover from simple things such as a cold, let alone an infection.

The infections lasted until weeks 8-9. They took a long time to go. These were the main things that delayed recovery as my wounds had to stay dry and clean. Been allergic to surgical glue and dressings this meant laying flat ensuring my wounds didn’t get too hot, or closed together, creating a lovely habitable space again for bacteria, so back to resting it was.

Between weeks 9-10 I took a huge leap, and I can honestly say I felt like I could feel my pre diseased body coming back to life. I no longer felt ill and I could tell that the inflammation had been removed.

Friends and family commented on just seeing me, they could tell that I looked well and getting back to the old me.

Trying to get back to a normal life…

I wanted to do things and eat things that I previously couldn’t, so I started to reintroduce food groups one by one to test for triggers or flares.

Be under no illusion, because you’ve had your colon removed does not mean your disease has gone. Unless you have a second surgery called a proctectomy done then you do still have a proportion of organ left even if it’s 3cm of it. This can still flare and trigger, so it’s about reintroducing things slowly to test the waters.

One fact for you. Having no colon means that I will no longer absorb water or electrolytes like the average person, therefore I need to consume around 3L of water minimum daily, along with additional electrolytes to prevent dehydration.

There is also a couple of things that the stoma team will tell you to avoid like any foods that have skins or pips in them. as these can cause blockages which are very very painful, and can land you back in hospital.

This therefore eliminates things in the diet again, but I’m learning to work around it.

Fizzy drinks should be avoided too but look… we’re all eating and drinking things we shouldn’t every blue moon so let’s not be too restrictive.

Between weeks 10-12 I honestly can’t even begin to tell you how life has changed for me.

I’m back driving, I’m back socialising, I’m seeing friends and family more, I’m not popping medication or getting stabbed with cannulas every week.

I have started to exercise again. I have more energy.

These may seem really basic things to the average person. But honestly they’re massive milestones for someone that’s been a very poorly person for three years, and who has just had major surgery.

Fun fact that might make you giggle…

I haven’t farted since the morning of 8th June 2023 and will not fart again, so don’t be coming at me with blame if there’s a smell nearby it physically cannot come from me haha!

Having a stoma has many pros and many cons, but ultimately it’s been life changing. In a good way!

Back to those thoughts I had earlier in the blog…

The first thing people do when they know you’ve had this surgery is wander their eyes to your stomach to see if they can see your stoma bag.

This isn’t a negative, it’s curiosity and that is absolutely fine. I actually find it funny now.

If you want to see my bag just ask, I will literally just show you. I’m comfortable with it now, and confident to show others if it means you’re going to be accepting of it, and it will educate you.

This can only be a positive experience for both parties.

People have been amazing. Friends and family have been so supportive, loving and honestly, all of those negative thoughts I had before have gone.

I have shown my bag to many people, some friends have seen my stoma exposed, my husband has changed my bag, I’ve showered with no bag on. I have educated many people on why I have this, and how it works.

It’s a learning journey not just for myself, but also for those around me too.

I Need others to learn about it, not only to help me personally but to also break a long stigma that goes with having an ostomy. They’re lifesaving! They are also a treatment option.

I Need others to learn about it to sometimes help me. 

Here is a funny scenario for you…

I go out with friends for drinks and get tipsy. We all have those nights out where we get drunk and want to just get home and crash into bed. 

That is legitimately not an option for me. A stoma bag needs to be emptied, they can burst. Fizzy drinks cause the bag to expand, and water absorption isn’t a thing when you have no colon. Therefore the more we drink, the more it needs emptying. You must go to bed with an empty bag as you have no control over when your stoma works. So if I get incapacitated, and cannot do this myself, I need some kind human to do this for me.

No it’s not the most pleasant thing for others to do, but do you know what? I have to do it daily! 

So if you want party drunk Sarah ‘out out’, then be prepared to be my stoma assistant too, because it’s gonna be team work, or a sh*t show!

I’m sure we would both prefer the latter! Haha.

Now my ileostomy is currently something that can be reconnected. There is a term people say “reversal”.

There is no such thing as a reversal. Your colon was put in a medical bin there is no bringing it back 👀

However if they have left your rectal stump and a few cm of colon, then once your body has recovered from your first surgery, there is the potential to reconnect your small intestine to your rectal stump again. This is called J-pouch surgery.

J-pouch surgery can be again both positive and negative, however it’s not something I am thinking about right now. I’ve had enough trauma for one surgery in a year at least. But there is an option for the future.

A really happy fact is that we are now allowed to try to have a family. ❤️

Although we’re not trying right now, for anyone reading this for your own educational purposes. Having a stoma does not mean you can’t have a safe and healthy pregnancy and birth. You absolutely can, and this is something we would love in the future. 

I can live a normal life completely. Some things just take a little more time, planning and consideration now.

Also stomas have personality they require a dress of their own and stoma bags come in many shapes, colours and styles. If you know me well, you know my soul colour is black…so my bag dress code is also black!

It can take a while to know what is right for you and what works, but this is what the amazing stoma nurses are there for.

I can honestly say the stoma nurse team are the nicest people I have genuinely come across. They’re kind, supportive, and more importantly, light hearted when it comes to your situation. Making you see the positives whilst recognising the reality and magnitude what you’re living with.

Whilst in hospital the stoma nurses will visit you to check on your stoma, and to educate you on how to change it and keep it clean.

A stoma is an internal organ so it’s super important to keep a sterile environment when changing your bag. Hands washed or sanitised or both. Clean surfaces. All of your supplies laid out ready. Bag cut to size. 

Fun fact. Stomas shrink over the first 8 weeks that they are out of the body therefore in your first 8 weeks you should re-measure it weekly at least. 

If a bag is cut too big for the stoma. The output can burn your skin, and deteriorate the peristomal skin creating ulcers. Therefore it’s really important that they fit.

You can also add other appliances such as barrier rings to give your skin extra protection from your output, and from the adhesive of your stoma bags.

If your wandering what a stoma feel like to touch… it’s like the inside of your mouth. They come in all different shapes and sizes, and mine has shrunk by 10mm since surgery. I call it my cute little berry “stomaberry” 🙂

Wherever I go I have to carry some extra supplies with me, just in case of any leaks, or I need to do a bag change for whatever reason.

Life has now settled with everything, and I’m ready to be let loose into the normal world again. Like going back to work. Which I did at 11 weeks 23.8.23.

I’m excited and nervous, as anyone would be having had three months off work. This is the longest I’ve ever been off work since I was a young 14 year old Saturday girl in a salon, so I’m going to need to ease myself back in.

My job involves a lot of travel and time on the road, so I will need to adapt to planning pit stops on the motorway, and carrying extra supplies in the car in-case I ever get stuck anywhere.

I’ll need to make sure I stay hydrated all of the time and eat at regular intervals. No skipping meals or going without as that disturbs your output.

I’ll also need to get confident using a disabled bathroom where available. For people with stomas using disabled facilities can be rough. Rough in the sense that you can see people looking at you as if to say “there’s nothing wrong with you”. But these are the people I will politely have to educate along the journey. Remember, not all disabilities are visible! Therefore reserve your judgment.

When leaving hospital the nurses provide you with a key called a “radar key”. This allows you to access disabled toilets around the UK making using facilities a little easier for us.

So… life has changed. I would say I’m a happier person now. Now I no longer have to live with constant fear of illness, and not knowing if I’ll be able to do things.

Life is good. In fact life is great!

This has changed my outlook on lots of things. Things like work life balance. The importance of downtime. The importance of stepping back from a stressful situation, and asking yourself “is this worth my health, both physically and mentally”?

Social situations. I’m going to prioritise mine where I spend time with those who are really important, and those people that make me a better person.

Opportunities. Take them. We don’t know if we have tomorrow, so if an opportunity sounds like a bit of you. Take it! If you get the opportunity to travel. Go!

The final bit of the puzzle for me is clothing. Us females often get stuck on a number. Numbers as in clothing sizes. One thing I have to now consider is my bag, and accommodating room for it, and for it to be comfortable. So this will be a process, but I’m secretly excited to buy clothes 😉

I’ve been writing this over the duration of my recovery, and it’s not here for any other purpose than of these two things…

1- For me to write it down and close this chapter.

2. To raise awareness and educate people.

I’m going to end on Thankyou’s.

Thankyou to the NHS, my surgeon, my consultant, the IMIC team, the Stoma care team.

Thankyou to my incredibly supportive husband Joe. He’s been my absolute hero throughout all of this and we’ve grown closer than ever! I love you.

Thankyou to both mine and my husbands families, you’ve all been incredible.

Thankyou to my insanely incredible friends. For checking in daily, visiting me in hospital. The podcast voice notes to keep me entertained. I love you all so much.

Thankyou to my workplace. For supporting me with time off when I needed. Well wishes and cheering me on through the journey.

It’s time to close this chapter at 12 weeks post op. 31.8.23.

It’s been a journey I’ll never forget. Here’s to a new chapter with my new body, scars that tell a story, a fresh mindset, new goals and health on my side!

Thankyou for sticking with me and reading my story.

If you’ve made it to the end! Your a diamond for riding it out.

In the words of Dame Deborah James (Bowel Babe) ‘Find a life worth enjoying. Take risks, love deeply, have no regrets, and always have rebellious hope. Finally. Check your poo. It could just save your life’.

All the best. Sarah & Stomaberry xXx