Been a while!

So I fell off the wagon with blogging here lately. With my stoma, not much has been going on at all. It’s settled down completely and I feel like it’s been here for much longer.

Life on the other hand has been a bit more hectic. Since summer last year we’ve been on our local bidding scheme to move home. Our current flat is rubbish to put it plainly. I can’t leave without assistance, no garden, rubbish parking with regards to my wheelchair access and safety for the kids.. The list goes on. As I do have access needs, finding something that ticks all the boxes has been nigh on impossible. Add to that the fact that local housing associations are reluctant to adapt properties to our needs.

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Well, since christmas about 4 different places have come up. Thankfully we are basically at the top of the list, so anything that goes on to the web site for bidding that is a possibility, we are likely to come first so able to view. One place seemed quite possible but it turned out there was issues with adding a ramp to the front of the property. This in the end killed that one. Another came up within the week of that falling through which has been, quite frankly, heavenly. It’s a 2 bedroom bungalow in a small village about 7 miles away. It has a beautiful wrap around garden that has a gorgeous shallow stream running along the back and right boundary. The inside is okay but by some miracle the housing association that owns it has decided to do a lot of work to remedy it including redoing the kitchen flooring, new boundary fences, completely decorating the bungalow due to nicotine staining and widening the bathroom doorway to allow my wheelchair to fit. I’m flabbergasted at how much they’ve said they will do. I hope it’s not because I got our local government involved as I felt they wasn’t doing enough to help with our housing needs but if that is the case, at least it worked.

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We’re hoping to move the beginning of June but nothing has been set in stone. We are literally bouncing off the walls waiting to move. My eldest is super excited to have a garden and has started to list her demands of garden furniture and equipment that she wants.

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I also received a new piece of medical equipment that has literally changed my life. I’m hoping to write a review on it soon so that it may be able to help others that are considering or looking for something similar. It’s an expensive bit of kit and I did get some assistance from a charity/crowd funding by friends to purchase it but I honestly would have found some way to get it had I been refused, it’s that good!

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Fart in a bag: from first fart to now

I never knew what to expect after surgery with regards to gas but I was told there would be a lot of it. Due to me possibly having keyhole, my abdomen was blown up like a balloon essentially meaning it had to go somewhere and the usual route wasn’t an option anymore.

First bag full of farts… Didn’t have a filter so it literally had to be vented out.

When I woke up I was very swollen. After about 12 hours, things started moving and it all began. I remember the first one was completely shocking and I didn’t know what to do with myself. It wasn’t necessarily painful, more uncomfortable and caught me by surprise. It felt like my gut was vibrating, sort of tickled too. After that it was a slippery slope of constant gas. My nurses gave me peppermint oil which I believe helped but it was still very frequent. Thankfully on day 3 my bag was changed to one that had a valve so I no longer had a balloon attached to me. These valves also have filters on them so as the air leaves, no stink escapes!

Passing gas is always noisy but it always amazes me how at the beginning it sort of sounded like a baby blowing raspberries and now it just sounds like normal trumps, just a lot louder lol. I guess it having a plastic bag over it amplifies it! It does also seem to be more frequent then pre stoma. The fact my bowel is working better now is probably not helping that. Also my gut is more sensitive to a lot of different foods at the moment which my nurse said should get better with time but we’ll see!

I do worry about it out in public, what will people think? But at the same there’s absolutely nothing I can do about it. If people are gonna be judgemental over something everyone does then that is their prerogative. My stoma is worth so much more to my health then other people’s shitty (ha) opinions.

Reality hits

Today’s been hard. I’ve had a constant shooting pain from my left leg into my groin, sort of like an electric shock every few seconds. Considering I have no feeling in that leg, its frustrating to say the least.. it also used to be a sign that I may have a uti developing. I say may as the last few times they tested my urine, it showed nothing, which is both good and bad: if it isn’t a uti, what’s causing it? It’s happened twice since surgery. The first time I just upped how much I was drinking and took extra pain medications. This time I’ve been drinking plenty and the pain isn’t subsiding with help.

My stoma surgery has been a bit of a wake up call in reality. I always knew my bowel was knackered but I just got on with it. Same really for my bladder. After having my son 2 years ago, it got dramatically worse. I thought it was because I had to have an indwelling catheter for a few months but even after all this time it hasn’t recovered. I had hoped that having this surgery would improve my bladder issues, after all having a full bowel pressing on it can’t be good? From what I can tell though, it hasn’t. I still have no sense of urgency until the very last second. Coughs, laughing, sneezing etc still results in accidents. It’s depressing to say the least.

Recieved some gorgeous flowers from an amazing friend in the post 🥰
Recieved some gorgeous flowers from an amazing friend in the post 🥰

I have an appointment with my urology consultant next Friday to discuss my options. He did refer me to physio to see if strengthening my pelvic floor would help but unfortunately that just revealed that I have zero control or feeling of it. The physio did mention stimulating it with small electric shocks but she was worried that could potentially interfere with the tumour on my spine. Seemed far fetched but that’s not something I want to experiment with.

So I’m slightly dreading this appointment. I don’t really want to end up with another bag, I struggle to to fit this one under clothes. All of the options sound horrible and painful with some pretty shit complications. Also I’ve just had surgery, so I’ve no idea whether they will want to wait (which I’m 50/50 about) or rush and get it all over and done with.

Days like this it’s easy to just feel like what’s the point but least the end may be in sight.

Hello 3am, my new friend..

I’ve always had trouble sleeping. When I was younger I needed the tele on in the background to sleep.. As a teen I didn’t sleep at all until I dropped. It got better once I had my first child as I was so exhausted I took sleep whenever I could. Now? I can’t sleep at night, in bed but in the day time? I can’t keep my eyes open even with kids screaming and so much noise. It’s got worse since I had my surgery.

In hospital, it seemed I was always the last one in the bay to go to sleep. 2am would roll around and my eyes felt itchy but I was still wide awake. Nurses came and went with observations, probably wondering what the hell I was doing.

When I got home it slowly got worse. At first I couldn’t sleep in bed as it was too flat, so I stayed on the recliner for the first week. That helped but then there was too many distractions, noises.. Netflix would suck me into a black hole of binge watching anything that remotely sounded interesting.

I think this is Tidelands but I could be wrong!

Tonight, again, I can’t sleep. It’s been 3 weeks and 1 day since my operation. I thought I was getting a bit better as I managed a few nights in bed but it was so broken up. My kids have been really restless too which isn’t helping. Add to that I’m scared to move. I can either sleep on my back or right side. Left feels too restrictive on the bag and I worry if I roll over in the night, would the bag pop? Leak? Block up my stoma?

Sleeping on my right side has it’s issues too. When I was 11 ish I had an operation to fix my hip that kept coming out of the socket. It worked but left me with a lot of scar tissue, which essentially doubles the size of my right thigh making it difficult to lie on that side. But needs must!

Hopefully it settles down with time but for now I sleep when I can, pinching a nap in the day time if my toddler deicdes to as well..

Two weeks post OP and first outing

I’m finding it really hard to believe that this time two weeks ago, I was sat waiting for what felt like forever for my surgery.

Today my other half turned 30. I really wanted to get out of the flat for a few hours as both kids was at nursery and school so it was an ideal time for us to have something to eat and celebrate a little on our own. My partner has been an absolute rock in my recovery. I’ve hardly been able to move so hes had to take over any responsibilities I had.

Paranoia was the theme of the day. from getting into the car and realising that the seat belt sat worryingly close to my stoma, to whether my bag was okay/checking for leaks and praying for no gas. I carried my bag I got from the hospital with me all day which had about 3-4 bag changes. I doubted I’d need them but didn’t want to be caught short handed..

My hand is over my stoma in this photo.. Bit too close for comfort with the belt! Maybe it will be better further after the swelling has reduced..

Day started taking my son and daughter to their nursery/school, one of which was down country lane. That was not fun, every bump, turn, vibration made my stomach feel weird. I’m not entirely sure why but I suspect it’s that the bag was possibly moving independently to my stomach so it felt strange. I’m gonna need to look into whether there is anything I can put over my stoma to protect it from the belt incase of an emergency or sudden stop. I spent most of the journey with my hand over it as it just felt too close for comfort.

After the short drive I insisted we visited a pharmacy to pick up some pain killers. I could feel the ache setting in in my back and stomach and wanted to beat it to the punch before it forced us home.

We then went an had lunch at our local cafe. I decided to have a cooked breakfast but avoided baked beans and the mushrooms. Baked beans make most people windy and the idea of that coming through the stomach is putting me off for the time being!

After a little shopping for some toiletries and warm clothes, we headed home and quite honestly I was so relieved. My back paid for it being in my wheelchair for so long and my stomach didn’t like it much either. I’ve no idea how people walk around so quickly after surgery, just even sitting up straight makes me groan.

This was meant to be posted on 1st March 2019 but was delayed due to me being a bit sore!

Pancaking for pancake day..

Bit of a gross one today but hey that’s what this blog is for eh? Funny that I should have this issue on pancake day too..

So I’m not sure what’s changed but for the past few days my output has been slow.. Not much at all. I tried not to worry as the stoma nurse said it could slow down.. Then I woke up and it hasn’t stopped. It’s at the point where it’s blocking itself up as it enters the bag as it isn’t moving down into the empty bit. I never thought this could be painful but it is proving to be quite uncomfortable and my skin is suffering from it. This happened today whilst in town. The bag ended up really ballooned at the top near the opening, the rest of it completely empty. I was so relieved to get home and change it asap.

I’ve tried two different types of bags (convex and normal) and both have been rubbish. I’m really not sure what I can do to help it so when my nurse visits on Thursday, I’ll be asking a lot of questions and hoping she has some kind of remedy for it as I can imagine, once the skin gets sore, it’s all downhill from there. I’m using my adhesive remover and trying not to be overly rough when cleaning but it still looks so pink and a bit stingy.

What’s probably not helping is I started my period on the 1st too. New stoma plus first period since = achey. My periods are usually a bit uncomfortable but this time it’s quite constant. Thankfully it’s only for a few days a month. Hot water bottles tends to help both bowel pain and period so that’s a bonus.

Where it all began..

Back in 1989, I was born with a neuroblastoma in the lower part of my spine.

Neuroblastoma is a rare type of cancer that mostly affects babies and young children. It develops from specialised nerve cells (neuroblasts) left behind from a baby’s development in the womb.

Neuroblastoma most commonly occurs in one of the adrenal glands situated above the kidneys, or in the nerve tissue that runs alongside the spinal cord in the neck, chest, tummy or pelvis.

It can spread to other organs such as the bone marrow, bone, lymph nodes, liver and skin.

It affects around 100 children each year in the UK and is most common in children under the age of 5.

When I was born I had no movement in my lower body, because of this they originally thought I had spina bifida. At a month old, I was diagnosed with cancer and started chemotherapy immediately. After 11 months, I was declared in remission and movement came back to my right leg.

Excerpt from a folder I made about my life for a school project. As you can see my spelling was terrible.

Due to the placement of the neuroblastoma, I have been left with a few medical issues. I’ll try to summarise these as best I can. A lot of it I don’t remember as I was a baby/child and didn’t care.

  • As the tumour left me paralysed, my left leg was flaccid and could not weight bare at all. My right, though mostly normal strength, was weaker. From about thigh down, I have limited feeling in my legs though the right one has spots of sensitivity. Later in my life I realised this numbness extended to the top of my legs and around my backside. I’ve had a few corrective procedures on my legs to try help some issues like relaxing my tendons and hips, swapping tendons from front to back so that I had greater range of motion. Due to the lack of feeling I have to be aware of the temperature, especially in my left leg as it can easily go purple/blue. I also have issues with swelling due to my left leg being flaccid and not moving which means fluid accumulates in it.
    My chariot and lifeline: Sunrise Argon 2 with Surge rims and Izzy Wheels spoke guards.
  • The tumour being in my spine means I also have a mild scoliosis, which gave me troubles with my hips. My right hip used to continually pop out of the socket as it is tilted higher than the left. When I was a child I had an operation to essentially reform my hip. It hasn’t dislocated since but has left me with horrible scar tissue and nerve sensitivity in my thigh.
  • I have a neurogenic bladder and bowel. For me this means that they just essentially didn’t work really. My bladder I had to learn to self catheterise or I could never completely empty, which, if full enough would reflux back into my kidneys. This also leaves me at high risk of UTI’s of which I have probably experienced hundreds since birth. I also suffer with stress incontinence of the bladder which I am hoping can be resolved in the future.My bowel essentially is lazy. Without medication or outside input, it just doesn’t want to work. To date I have had 3 operations on it; 1 ACE, 1 redo of the ACE and finally my laparoscopic end colostomy.

    The ACE operation allows patients to selfadminister enemas into the bowel near to its start(the caecum) rather than at its end (the anus orback passage). By placing the enema in thecaecum, the bowel is encouraged to contract andhopefully the whole bowel evacuates.

    The ACE proved to be really painful and due to circumstances at the time, I decided against using it as a teenager and it eventually healed closed. Since then, for about 15 years, I tried to manage my bowel with medication but the pain proved to be too much and I felt constantly ill from being full all the time. I also suffered from embarrassing accidents so tried not to go out for a few days when I had my medication which with children and commitments became difficult.

  • As a result of being a wheelchair user for the majority of my life, my pelvis is deformed. This wasn’t a problem really until it came to the time to discuss how my children would be entering the world. Originally it was planned that I would attempt a natural delivery. Even though this filled me with anxiety (how do you push when you have zero control of those kind of muscles usually?) I was willing to try. Thankfully, a resourceful consultant decided to consult one of my old MRI’s which showed that it would be difficult and dangerous for a baby to try pass through my pelvis. As such it was decided that a caesarean section would be the best course of action. Initially this was to be under a epidural but due to my scoliosis, this proved impossible to administer and I had to have general anaesthesia.
My two not so little people!
My two not so little people!

So hopefully that’s a basic gloss over how I got to where I am today and also shows that there can be so many reasons why people end up living the colostomy life. Through it all, I consider myself to be very fortunate. I’m glad that I had the cancer when I did as I don’t really know any different. Also that if the tumour had have been any higher, the outcome could have been much worse. It’s took me a long time to be comfortable with my lot in life, I do have the odd days where I feel like life is taking a enormous crap on me but then my little family remind me that it’s not so bad.

References:
https://www.nhs.uk/conditions/neuroblastoma/
http://www.hirschsprungs.info/Information/literature/ACE.pdf

Day one

The 15th of Feb 2019 started out shit, literally. The night before I had to do a bowel preparation, which involved drinking 2 litres of laxative called Moviprep over 4 hours in the hopes I could empty out my bowels for surgery the next day. Well, it didn’t work as it should have and took a long time to do what it did.

I finally got to sleep at 2am as I was frequently needing to go to the toilet despite not much happening. I’d hoped it was all over. When I awoke at 5am, my lower half was literally covered in poo. I was so upset, embarrassed and angry. I think it put a massive nail in the coffin for some of my fears that a stoma was unnecessary. I had an hour to get ready before we needed to start the journey to Addenbrookes to be admitted. In that time I had to shower twice as the laxative was still working in my bowel and wouldn’t stop. I think in that short period of time, I had around 3-4 accidents. Thankfully I have an amazing partner who cleaned up for me whilst I tried to rush to get dressed and ready.

Because of all the drama we arrived late but this didn’t seem to be much of a problem. Once we arrived at the day surgery, the nurse in control of the day admissions informed me I was last on the list to go down to theater at 3:30pm and I could drink water only till 11am. To say I was frustrated would be an understatement. Pretty soon after I saw my surgeon who went over the procedure, the risks and my consent. At this point I was getting extremely nervous and starting to doubt myself again. I never really try to think of the complications; so when it’s spelled out to you, plain as day, it’s a bit daunting. I’d list the risks now but I think I’ve mentally blocked them out, I can’t recall exactly what she said. My surgeon also pointed out that the chance of a parastomal hernia was quite high, between 10-50% which was also quite a big shock. I think she could tell that I was getting anxious as she said went over everything and said that most of it was minimal risk and that if she was very concerned, we’d be having a more serious chat about it.

Not long after I had a brief chat with a research assistant that I’d spoken to previously about taking part in research on the causes of parastomal hernias in the hopes of preventing them in the future. She explained that the research would not involve anything physically, that it would be based on my surgeons notes, my medical history and me filling out questionnaires about how I felt which was fine by me. If I could do anything to help, I would. It’s not only me that benefits from this after all!

At about 11 my partner had to leave as we would run out of parking and he had to get back to look after our son. Just as he was leaving I was called in to go over my pre operative assessment to make sure all was okay. As my bowel was still being annoying, they moved me to a room on my own instead of having to wait in the waiting room which was relief. This also allowed me to sleep away the hours I had left before I would go down to theater.

View from side room
View from side room

At about 3pm I was woken up by the anesthesiologist to go over the last few things and see if I had any issues or questions. He said it shouldn’t be much longer… Cut to 5:30pm and I’m finally being taken down to the main theater. By this time I’m shaking with nerves and getting a bit teary. I’ve never really been on my own before going down to theatre so I was finding it quite difficult. Thankfully I had an amazing team around me that was so lovely and tried to soothe my fears. I was given some anti anxiety medications in my cannula and then a few minutes later the sleepy stuff…

When I woke up, I don’t really remember much other than being told I was in intensive care and being in so much pain. I was told to press my pain relief button as much as I needed and as far as I can tell they had to give me extra as I was getting frantic with the pain. Me and anaesthetics really don’t mix. Unfortunately, the lovely lady that was looking after me gave me a phone so I could speak to my partner which I now think she shouldn’t have as all I did was worry him as I was so upset over the phone and I can’t even recall what I said to him.

Eventually the pain settled and I managed to start drinking once I was more alert, which I think was near midnight. I was offered tea after managing water. As that all stayed down, I was given a few biscuits.. Which turned into quite a few biscuits… Then a sandwich. It’s safe to say my appetite was back with a bang after not eating for 48 hours. It was around this time that I was curious about what had been done. My stomach was so bloated and hard. I really wanted to see the bag so the nurse helped me get the blankets off me and showed me the bag. The first bag I had didn’t have a window to look through which I’m pretty grateful for now. In my fragile state I probably wouldn’t have liked what I saw much.

Looking back on it now, I’d easily say it was the most painful surgery I’d ever had but also one of the best decisions I ever made. Knowing now, just 2 weeks later what I do, I’d do it again in a heart beat if I had to.

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Selfie the following morning once I got my phone back. The medication was helping a lot lol.