Wednesday, December 30, 2015

Loop Ileostomy Reversal


Apologies for being so quiet, I had a nasty bout of depression whilst waiting for a date for my loop ileostomy to be reversed. Finally I heard and had my surgery yesterday morning (29/12/15). I was very very nervous leading up to it. It's generally a simple surgery, but I've had so called simple surgeries this year that haven't turned out to be and every surgery to date has lasted over double the predicted time due to complications. My main worry was that once they tried to reverse it they wouldn't be able to and I'd wake up with it still in place, possibly forever...


This was a photo I took the night before my surgery when I was hoping it would be my last selfie with my Ostomy bag. 


My surgery ended up being much quicker than expected and so far so good... I've been very nauseous and in quite a lot of pain since waking up, but I think that's mostly as I pushed myself too far after waking up excited to be bag free oops.


I haven't seen what's under the dressing yet so have no idea what kind of scar I'll be left with. My stomach has swollen up a lot more today and is very tender, but I expect that this will go down over the next week or so. I'm hoping the nausea is down to the anaesthesia drugs still in my system. I was sick this morning so just taking things easy.

I will be allowed to go home once they are sure my bowel is working properly and I don't have any surgical leaks. So far I've passed a little wind twice but nothing more than that yet. Felt strangely satisfying I must say after not being able to for 5 months! 

The doctor drew me a couple of drawings of how they have completed the reversal. 


So they cut around the stoma and inserted a staple gun around it. They cut the top of the stoma off and then stapled a zipper like effect to join the ends back together with a row of titanium staples. I now have a permanent internal loop in my small intestine and some new metal work for life, but it shouldn't set off metal detectors or things at the airport etc. Hey will show up in X-Ray's and CT scans and I'm hoping to have one done at some point so I can get a photo of what it looks like. 

All that's left to do now is recover from this surgery and then chase for a date to have my non functioning kidney removed and I'll be sKatie 2.0!!! 

Sunday, November 29, 2015

Looking back in order to move forward

It's a tough time of year for me and made worse by the news of my pending redundancy. Around this time three years ago me and my husband separated. It didn't help that he ended things by text and I later found out he had slept with someone else while we were married. We had been together around 9 years and married for 7. 

The following year at this time I was also going through redundancy and general hard times still and took an overdose. I didn't tell many people at all and spent a few days in hospital by myself in a lot of pain and being terrified that I was still here but that my organs could shut down. 

The next year around this time I split up with my on/off partner but had lovely friends to look out for me and lean on. It was lovely a lot, but overall it felt like a bit of an up turn. 

This year I'm back at the bottom again and struggling to see how life has improved. Things don't appear to have improved since my overdose. I feel like I've lost so much the last three years. My husband, my Merlin cat, my gran died, my Morgaine cat is terminally ill, my health is shot and I'm without a job and money again and my best friend walked away from me when I first got sick... 



I'm trying to find positives and reasons to keep going. I still have Morgaine and my other two kitties. My family have been an amazing support this year and my other best friends have been there still and have gone above and beyond. I started a new relationship which I'm taking a day at a time (I have a lot of trust issues funnily enough). 



People tell me I'm brave and an inspiration. I don't feel like that at all, I just think I'm doing the best I can to make something from a series of bad situations. I don't like feeling out of control of my own life and it's a struggle to feel like I'm making the decisions for myself. I'm going to try and find strength in MY decision to relocate to Liverpool. Life will always throw things at you out of the blue, but I will keep reminding myself it's up to me how I deal with that. I want to look back, learn from my experiences and moe on with a clean slate from here. 

Thursday, November 26, 2015

Making lemonade from lemons

Firstly apologies for the black of updates. November and October were cruel months with my eldest cat Morgaine being diagnosed with two primary tumours and terminal cancer. I've been giving her palliative care at home and she's been responding well to her medication. It'll stop working at some unknown point though and then I'll have to say a final goodbye to her. 


My depression got really bad and I stopped keeping in touch with people and tried burying my head in the sand. This did nothing to help my depression and I'm slowly trying to be more sociable again and get out into the world a little. I met with my employer on Monday this week to discuss my return to work and feeling like I have a life. It would mean I'd be back earning money and have a company car so I'd be able to rejoin my roller derby league, climbing, pole fitness and have more freedom in general. Instead while I've been away the company hasn't done well in the economic market and so instead I'm being made redundant early December instead... Argh!!!

So... What to do... No job, no money, no dates for my remaining two surgeries. Do I try and get another job knowing I'll need time off for two lots of surgery or do I completely start from scratch. Making a snap decision I've decided to cut Mystics with Croydon and relocate to Liverpool, the city I was born in and moved away from in 1999. It's scary as al hell. I don't have a job, I'll have to live with my mum in a small room for 6 months with my cats, I don't know a lot of people and what on earth do I do for work as I have the same problems there waiting for surgery dates. 

My short term plan is move out by the end of December latest, get the flat done up in Jabuary and aim to rent it out for February ideally. I'll look for a job when I'm in Liverpool, something casual. I don't want to stay in my old career of scientific sales and want to use this time to build my own path and make my own decisions so I can do something I love in a city I love.

I have a few friends and family members in the city who will likely get sick of me very quickly! I'm applying to transfer to the lovely Liverpool Roller Birds and joined a knitting group when I was up over August as well as reconnecting with a couple of old friends from school/my mums church. 

I'm trying to see this as a positive thing and not dwell on the terror. This was all decided yesterday and I'll be continuing treatment in London and visiting friends and family in the South as often as I can. I have some truly amazing people in my life here and no way will I be losing touch with a single one of them. I will turn these lemons into lemonade...

Ending on a positive : Recent photo of me DJing for the lovely London Roller Girls from inside a cupboard. This is something I hope to continue doing as the sound guys live in the North West.


Tuesday, October 27, 2015

Enema test - the complete loss of dignity!

Last week was my water soluble enema test at the hospital. They wanted to check if there were any internal leaks around the surgical site in my bowel where a 15cm piece was removed. I read the notes beforehand but they seemed fairly intense so I didn't want to focus on them too much. Needless to say going in I was pretty nervous...


First I had to change into a hospital gown and remove any jewellry around my pelvic area and the bottom half of the clothing plus my bra. Going into the X-Ray room the doctor and assistant really put me at ease. I'd made certain is not eaten anything for an hour beforehand and was so glad my friend was waiting for me outside. The test involves inserting a catheter up my rectum (bum) and then syringing contrast dye up the tube into my bowel. A very very odd feeling! The liquid felt cold internally and it was such a strange sensation of my bowel being full, especially strange as I haven't used my large intestine and lower bowel since late July...

The whole time they kept taking X-Ray's which I could see on a screen next to me and they got me to change the position I was lying in a lot to get the dye to move around internally and added more dye as we went. Having the catheter in wasn't too bad once it was actually in. The strange bits were inserting it, adding more dye and most definitely pulling it out which was very unpleasant O_o 

The good news is that there are no leaks around the main surgery site which was very low down and the dye travelled all the way to my stoma. I took a very sneaky picture of the X-Ray shush. 


It's fascinating seeing my spine, hips, pelvis and the dye. Any gaps are because the bowel is continually contracting doing something called peristalsis. It does this even when it's not connected to my small intestine. The doctor really explained more about the surgery that was done to me and how my loop ileostomy works in a way I really understand. 

Afterwards I had the dye still inside me. It was a clear liquid and some travelled all the way through and out of my stoma into my bag, but the rest I had to pass out of my body into a toilet. Again a very strange sensation passing clear liquid on and off for the rest of the day after not using that part of my body since July and considering I had a gynaecology appointment an hour later. I think any remaining bits of my dignity were lost by the end of the day!

The best news is that once my surgeon sees the X-Raybresukts and if he agrees, he can out me on the wait list to have my stoma reversed. I'm hoping it'll be this year but no news yet. Keep your fingers crossed for me as I'm really struggling with extreme exhaustion and lack of nutrition. For many it's such a blessing and improves their quality of life, I just haven't had that experience with it sadly. 

Monday, October 19, 2015

Adventures with Jabba (my stoma)

So I decided it was time Jabba had a new bag to wear today. I get my kit out, take the old bag off and start going through the cleaning stages etc. I've just put calomine lotion on my skin and everything is going more smoothly than usual, when the door bell rings and I'm sure it's the postman. I grab a wipe and run downstairs and ask if he can leave anything for me in the recycling bin outside. Apparently not as it needs signing for so I apologise in advance and run back upstairs to grab the key bearing in mind Jabba is never quiet for long. I open the door wearing a scruffy top, pj bottoms pulled low down and a wipe held over my calomine covered abdominal stoma apologising lots. Postman looks confused and also apologises. He shuts my door for me and I run back upstairs as Jabba starts pretty much exploding... Eventually the bag change is completed and everyone lived every ever after... Until the next incident and bag change...

Sunday, October 18, 2015

My Ostomy Diet

Having an Ostomy has meant making quite a few changes to my diet. It's still fairly new and my body is still adapting to it. I think over time what you can eat massively opens up, but at the moment I'm still very sensitive to what I can and can't tolerate. I was advised before leaving the hospital of the following :

- no green food
- no brown food
- no mushrooms or nuts
- no skin so vegetables and potatoes etc must be peeled
- no hot food including onions, garlic and pepper (fresh and ground)
- no seeds, pips or stalks
- no high fibre or sugar free food

As a vegetarian this doesn't leave me with a lot of choices...! I'm mostly eating white carbohydrates and plain tomato or cheese sauces. I can eat peeled carrots but not much else vegetable wise. Bananas are good for me and I like them too which is a bonus so I get a little fruit as well. 


At the moment my digestive system stops at the ileum, so I don't have a colon or rectum. This means that I struggle with absorbing water from my food and my output is mostly completely liquid. The nurses advised not to drink a lot of plain water because dehydration can be an issue as I can't process it properly, but as I have kidney problems also I need it. I try and drink ribena and hot chocolate as well as plain water to try and keep all of my organs happyish. 

I've been having pretty much constant stomach upsets so have been eating marshmallow and gelatin sweets for medicinal purposes. It sounds ridiculous but it works to slow down the output. It's not vegetarian but I've had to give in temporarily. Hopefully my stoma isn't forever and I'll give up gelatin as soon as its reversed. 

The stomach upsets really hurt as the stomach acid comes straight out of my stoma and burns the skin around the opening on my abdomen. It's like having a circle of severe constant sunburn so I'm trialling a barrier ring around my stoma before attaching the bag to try and protect my skin and lessen the pain and burning sensation. 

I had eggs, onion, peppers and garlic on purpose and accidentally and all of them have given me immediate two day long horrible stomach upsets so I'm very careful now. It makes eating out extremely hard though as they aren't always listed as ingredients for things like pies and in sauces. I try and take my own sandwiches etc wherever possible. It's very dull and I'm really hoping I can get my stoma reversed so I can eat food I enjoy again and increase my energy levels. 

At the moment I can manage 2 or 3 energetic activities a week maximum and then have to rest a lot in between. Standing still continues to be very difficult and twisting my abdomen or doing anything with endurance is tricky. I'm not giving up though and continue to push myself as much as I can realistically. I managed a two hour roller derby boot camp yesterday doing basic skills. It's so good to know that my body remembers how to do all of the movements even if my endurance is pathetic. 

Saturday, October 10, 2015

World Mental Health Day

Today is World Mental Health Day and the focus is Dignity. I've had depression as long as I can remember and developed anxiety and panic attacks a couple of years ago. My panic attacks happened very out of the blue and I usually burst into tears and felt the need to run away from whatever situation I was in and hide sobbing in a bathroom. It was highly embarrassing and happened often when I was in a group situation. I felt so out of control of what my body and mind were doing. I get a little more warning now I'm used to the panic attacks and can feel my anxiety starting to build, so I try and calm myself down or take myself away from people before it spills out of me causing a scene.

The depression I'm a lot more familiar with. I know it's getting bad when I want to cut myself off from everyone as I find being around people very difficult. It's an inward struggle as I feel like I'm fighting all the negativity my brain throws at me. You're not good enough. No one likes you. Why don't you just go away forever. You're ugly inside and out. Annoyingly I'm usually a very sociable person and enjoy the company of people (I prefer small groups to large gatherings ideally) which makes this doubly difficult to deal with.

Ways I've managed my mental health have been tricky. I've controlled my eating and lost a lot of weight at times plus I've self harmed by cutting as which started when I was around 15. More recently I've been trying to have lovely hot bubble baths and do some kind of exercise to try and block out the negative thoughts. I'm on an NHS wait list for CBT since around May/June, but it feels like the wait is taking forever...

Being ill this year has had a massive impact on my sometimes fragile mental health. I haven't been able to exercise so that coping method is out. For a while I wasn't allowed to have a bath as I had dressings that couldn't get wet so I had to have careful showers. Now I have an Ostomy bag there isn't a time when I'm not wearing it so having a bath means seeing it floating still attached to me in the water and worrying if it will get unstuck that night and leak. The bag makes me feel fat, ugly, different and unwanted. It takes away my dignity when it gets very active and produces a lot of gas causing the bag to puff up like a balloon which is very hard/impossible to conceal. 




I'm struggling at the moment if I'm honest. I hate the way I look and the way I get so exhausted if I have two active days in a row. I had two days in London this week for hospital appointments and the next two days I could hardly move off the sofa and ended up napping most of those 48hrs. It feels like I'm wasting my life and everything is passing me by, like I can't get involved or actually be a part of my own life. The feeling of loneliness and disconnection is all consuming at times. 

I'm trying to overcome it. At least now I recognise the signs of when things are getting mentally tough and I try and reach out to my close friends and resist the temptation to curl up in my shell and hide from the world with my cats. I try and force myself to at least walk into town and get some fresh air and gentle exercise a couple of times a week. I try to remember this is temporary and what's one year when hopefully soon I'll have finished my surgery journey and be able to start life anew having refocused and reprioritised. I look forward to being able to work out, play roller derby, climb, do pole fitness and anything else that looks like fun without having to make sure the days afterwards are clear so I can just sleep and take pain killers. 

Therapists and books always recommend living in the now and I'm spending far too much time living in the future where I am fit and strong again. The now isn't fun but it is what it is. I will spend today thinking and being grateful for all of the things I can do instead of being sad about the things I can't do. Also I will spend today giving thanks for all of the wonderful people in my life who have been so understanding, supportive and kind. I love you all and I'm so grateful to those who put up with my mood swings and self destructive tendencies.

Tuesday, October 6, 2015

Kidney consultation and stent be gone!

Today was my first consultation with the Urology Professor to find out more about what's happening with my kidneys. He showed me the images from the radioactive dye test which I snagged a photo of. When I first looked at it I thought ok cool, there's a front image showing both kidneys and a side or back one below showing both kidneys. Apparently not... The top left picture is the front view and the top right picture is the back view. In each photo only the right kidney is visible meaning the left one did not absorb any of the radioactive tracer because it is non functioning. The lower photos are from the side and again each only has one kidney show up 😔 

The bad news is I definitely do only have one functioning kidney and the left one needs to be removed to prevent further infection and complications. The good news is that at the moment it isn't swollen or inflamed so I have options as to how soon I want to undergo the major surgery to remove it. It'll be a tricky procedure as although it can be done by keyhole / laparoscopic surgery, apparently I have a "difficult" pelvis and other complications mean that it'll need to be done through my side rather than from the front/stomach. Luckily my surgeon pioneered this procedure and is an expert phew! It does mean I will need at least two more surgeries and a joint procedure with colorectal is definitely not possible. Doh. 


While I was there I asked when I could get the stent removed and joked that I would have it done now if possible. I should have kept my mouth shut as after checking he found that they had the equipment available so whisked me off to a surgical room and removed it then and there! 


It was an extremely uncomfortable procedure done whilst fully conscious. I had to have an injection into my butt muscle of antibiotics (that was a first for me!) and oral antibiotics as well. The only pain relief I was given was a gel at the entrance to my urethra (tiny hole pee comes out). They put a grabber (their term not mine) up my urethra with a camera on it so I could see what was happening on a screen. It went into my bladder and the surgeon located the stent, grabbed it and then pulled it straight out. My word putting the grabber  in and pulling the stent out made me wince and walk like John Wayne getting off a horse afterwards!!! The stent was much bigger than I imagined too. Having it out will hopefully stop some of my recent pain, general discomfort and constant sudden and painful urges to urinate...


I wish this was the end of it but tomorrow I am back at the hospital to see the stoma nurse and I have two more appointments next week too. It has to end eventually right...? Right? Right?!? 

Saturday, October 3, 2015

World Ostomy Awareness Day 2015

Today is World Ostomy Awareness Day 2015. I've had my Ostomy and stoma since July 28th 2015 so just over 2 months now. I'm still getting used to it (I nick named my stoma Jabba as it reminds me of Jabba the Hutt and it jibber jabbers away to itself) and have good and bad days. Some days I accept it and others I loathe it and the way it looks and how it makes me feel. I'm still very prone to stomach upsets and having your bowel come out of your abdomen isn't fun. I am getting better with the practical side though and managing that. I've had 3 bag leaks so far but think I'm a little better at knowing how to deal with them... 

These are two of the types of bag I have used (I've had 3 so far). I'm currently using the bottom one and am working up the nerve to try a shower without wearing a bag at all. The digestive system is an involuntary process and the intestines do their own thing pretty much constantly. They are always digesting food and stomach acid as well as producing gas which all goes into the bag. I regularly empty it and change it every 2-4 days completely. If I shower with it uncovered I'll just have to take my chances and have everything ready to put a new bag on straight afterwards and be prepared it may be messy. 


My first photo post surgery. My surgery was for endometriosis but ended up being a lot more intense than expected as once they opened me up they found everything was glued together in my pelvic region. The stoma was not planned and was a surprise when I woke up.


This is me around 3 weeks post surgery I think. The bag covers my main scar running down from my belly button. You can see some of the scars on the side and my stoma can be made out inside the bag just about (the round red bit).


This is pretty much how it works. The bag is bigger than in the picture but it sits to the right of my belly button just slightly lower than it. 


I never knew there were so many types of stoma and Ostomy! I have a loop ileostomy so it has two lumens/holes. One is active and one isn't. For me the bottom hole is the active one which helps me to clean it a little more easily. 


As I said some days are good and I'm able to live a very active life. In this photo I'm in the white top and hopefully you can't even make out my bag. I managed to attend my first informal roller derby session post operation and somehow managed to skate 27.5 laps in 5 minutes! Not bad considering I haven't been able to skate or train in any way since April when I collapsed and began my surgery journey. 


I have good and bad days as I said and am due more surgery to remove one of my kidneys and hopefully at some point reverse my stoma. In between I am aiming to do as much as my body and brain will let me do. I'm not a quitter and am determined to get my life back as much as possible once all of my surgery is finally completed. 

I'm hopeful that reading/seeing this will help people realise what a stoma is and that it isn't the end of the world. You can still be active and lead a "normal" life. It's not something to be ashamed of although of course it can be highly embarrassing often. I decided to be open about it as hiding it made me feel worse, but it's a completely personal choice for each individual and there is no right or wrong way to deal with it. Feel free to message me if you want to chat about how it inpacts you or a loved one, I'm learning as I go and making it up but sometimes just talking helps. 

Wednesday, September 30, 2015

Alas poor kidney, I knew him

It's been a week of big news and it all came on Monday morning. First the great news : I am officially cancer free! They took biopsies during my last surgery and found endometriosis (shocking 😉) but all pathology results came back clear of cancer. Endometriosis causes a rise in the markets that they use to test for cancer so it's been great to finally get a proper answer on this. 

I've been chasing the hospital to find out what's happening with my stoma and my kidneys after I had some tests done. Last month they injected me with a radioactive substance and then two hours later took photos using a gamma counter to see what exactly was going on with my kidneys post operation. If all was well and they were both functioning again then my stents would be removed. 

I spoke to the secretary for the urology surgeon and was told that he had written that I need a laparoscopic nephrectomy. This translates to my left kidney is non functioning and so they want to remove it using keyhole surgery. I have been passed to a professor and I have a consultation next week to discuss this and figure out a plan. I'm not sure how urgent this is and what the implications are yet, but I've decided that I'm not letting endometriosis beat me and I refuse to give up any of the things I love doing. 


With this in mind yesterday I went for a skate in the sunshine local to me. It's my first time doing exercise without wearing any support garments for my Ostomy bag. I took a photo with the bag showing although I skated with it tucked under the waist band of my shorts. It was so nice to skate carefree and just not worry about being ill for a change. 


I wil not be defined by any illness and I will continue trying to return to health and fitness. It would be nice if life have me a bit of a break though. After a month of not having to step foot inside a hospital, October is now full with 3 new hospital appointments with various different departments. 

Sunday, September 27, 2015

Progress Update and Low Mood

I've been pretty quiet online in general over the last few weeks and not really been talking to many people. It's been a hard couple of weeks mentally. I've been so exhausted from not sleeping very well and constant stomach upsets which are very painful. As I don't have a full length intestine anymore, any stomach upsets bring stomach acid out of my stoma which burns my skin and is just generally very uncomfortable and messy to deal with. I don't know if this is partly causing my lack of energy, but I suspect it's part of a bigger picture linking up not enough sleep, still playing with my diet and my low mental state. It's a bit of a vicious cycle as the lower my mood is the lower my energy levels are and then the lower my energy levels are I can't do as much so the lower my mood becomes. I need to find a way to pull myself out of this cycle and start finding ways to be more active again.  

Mostly I've been walking a couple of miles every few days. Moving my body and the fresh air always makes me feel a bit better, although with the stomach upsets I have to make sure I'm always near a bathroom in case I have to empty my ileostomy bag. I've also been having issues with my kidney stents post operation the last couple of weeks too which are giving me quite a lot of pain around my bladder. As all my surgery has been organised by gynaecology, I don't have direct links with the urology and gynaecology departments at the hospital so am trying my best to track down the relevant surgeons and teams so I can sort some more follow up appointments. Again though this takes energy and concentration which I have in short supply. 

I'm in a very low place where I'm hating my body and what I feel I am unable to do. All the food I like upsets my digestive system so much and it's very difficult not to dwell on all I feel I have lost. I'm writing this in the hopes I can turn things around again and start to enjoy life a bit more again. At least I've had a chance to catch up on knitting squares for a throw I'm slowly making, completed my first crochet square and have discovered Pretty Little Liars to watch...! 

Wednesday, September 16, 2015

Bouldering with an Ileostomy

One thing I loved doing before my surgeries this year was indoor climbing and especially bouldering which is climbing without a harness or ropes. To celebrate being six months since my last major surgery I decided to see if I was ready to give it a very tentative try so off I went to Craggy Island 2 for the ladies session that my friend runs.


I wanted to try traversing which is going around the centre and not up. It meant I'd be just off the ground and could step back at any point. I know I can't jump at all at the moment as it hurts too much and pulls my internal stitches so I was very nervous to fall off. 


Not only did I manage to traverse the children's room a few times, I also managed to try a couple of routes and even complete some!!! Of course I was very very careful to climb back down instead of jumping down and I listened to my body the whole time. If I wasn't sure I could 95% make the next hold I climbed back down. 


I have a project route to work on and am hoping to go again soon and continue easing back in, still remembering to listen to my body the whole time. It gave me such a rush to have been able to even be able to traverse let along actually climb and I got a friend to take a few photos with my ileostomy bag on display (I wore support underwear and a control best from Primark to help support my abdominal a and keep my bag held securely in place). One day I'll get back into rope climbing, but not for a while longer yet. I'm concerned about wearing a harness for my abdominal healing and Ostomy bag and the risk of slipping and hurting my internal surgery is significantly greater. Bouldering is my favourite type of climbing anyway though so I'm happy! 

Monday, September 14, 2015

Kidneys : The Story So Far

I've had kidney pains for a number of years now and had reported them to my GP. My blood pressure was off so as well as urine tests I was sent to the hospital to get a blood pressure monitor I wore for 24hrs. Every hour it would bing and then take my blood pressure as usual with a cuff that tightened. The blood pressure was recorded and after I returned the machine logged and checked. At the time everything BP wise was fine and I was given a course of vitamin D tablets and told to try and get more sun. A few years passed before I went back with more kidney pains and a swelling that went up and down in my right leg right near the bottom of my butt on the side. Nothing was done and I was told it was related to my monthly period/hormone cycles. 

Obviously now I know it was all related to my endometrioisis which went undiagnosed for 20+ years... When I first started getting severe pains near my right kidney in April one of the first things they checked was for kidney stones by doing a CT scan. It was then found that my left kidney was severely damanged and had been for years with something called hydronephrosis. This basically means that the endometrioisis had formed in a build up around the left ureter (the tube that runs from the kidney to the bladder) in particular squashing and squeezing it until no liquids could pass from my kidney to my bladder. There was a lot of scar tissue as well and my kidney had shrivelled and shrunk in size and was full of water so was quite rubbery and a bit like a balloon.

The right kidney had been functioning by itself for who knows how many years and was basically going into crisis too hence all the pain and eventual collapse. Work needed to be done on my kidneys ASAP to save my life and enable me to keep my left kidney so an operation to put stents in both ureters was planned. These would open them up and allow fluid to travel from my kidneys as usual to my bladder and would also mean that the ureters would be more visible during my main endometriosis surgery making damage to them less likely. 

The surgery is fairly simple I was assured even though it sounded fairly icky! A general anaesthetic would be given and then stents put up my uthetra (the opening where you pee out of above the vagina). These would then be unrolled and join the kidney to the bladder and overcome any blockages in the tubes. I remember my dad being all ok cool about it and me saying erm no, nothing is supposed to go up the urethra...!!! This was scheduled as a day surgery and I would come out and spend the night at my dads house near by before going home as usual. 

This was my first ever operation and general anaesthetic. I suffer from anxiety and so was very nervous and trying not to have a panic attack going in to the anaesthesia room and I was so grateful that they let me keep my stuffed cat toy Mini Morg with me. They drew pen arrows on both arms to show stents were due to be placed in both ureters. I remember them telling me I was feeling sleepy and me replying no I certainly was not... And then I woke up in recovery! The catheter felt so strange and I felt a strong urge to pee so insisted they put a bedpan under me even though I couldn't use it. It was a natural thing, to pee into something and not have it collect down a tube with no conscious peeing by me. 


It turned out the operation hadn't quite gone as planned. The right stent had been inserted no problem, but the left they hadn't been able to do despite trying for a lot longer than usual. This was the side with the hydronephrosis and he extensive endometriosis damage. I was scheduled for another operation two days later and instead of being able to go home was admitted to hospital. 

The next operation was with a radiologist and I was to be awake for it. I was given sedatives and pain killers, both would have an amnesiac effect so I wouldn't remember most of the operation. They were going to cut a hole in my back and try to insert the stent into my back, then my kidney and down the ureter into the bladder. Basically going from top to bottom this time. They again let me take Mini Morg with me to cuddle for the duration of the surgery. I don't remember a lot besides them taking lots of X-Rays of my back the entire time to help place the stent until they got to my bladder... It was so uncomfortable and painful in such a strange way. It gave me a really urgent urge to pee but hurt at the same time. I remember saying ouch a lot and them offering me more pain killers and sedatives which I gratefully accepted but felt cold and stung all the way up my arm. 


By the end of the surgery which had taken double the amount of estimated time, the stent still wasn't in the correct place. Another surgery was scheduled for two more days time to again have a general anaesthetic and go up the ureter to pull the stent down and into place. By this time I was feeling pretty low and frustrated. If the third surgery didn't work they planned to go back in through my back again and push it down more which I just knew was going to be horrible... Apparently due to the hydronephrosis my kidney was so full of water it was like trying to pierce a water balloon. 

Fortunately the third surgery worked and my kidney stent was finally in the correct place. Three surgeries in six days and a few days later I was ready to go home. My leaving the hospital is a whole other story...! 

Tuesday, September 8, 2015

Exercise roundup w/c 31/8/15 and goals for w/c 7/9/15

It's been a successful first week reintroducing myself back to exercise and I smashed all of my goals and then some! I managed a couple of nice one mile plus walks and I snuck one in the day before officially starting my goals as I was so excited to get started! I pretty much just walked across Calderstones Park and back so got to enjoy some nice green spaces to look at on the way. On the way back from one I spotted an outdoor gym and decided all the equipment looked worth having a go on if I was careful and listened to my body. 





One day I went to the Sunflower Centre in Liverpool which is a charity set up to help those dealing with cancer. It's for people suffering with any type of cancer directly as well as their relatives and carers. It's run by a lovely group of people who let me go to one of their seated Pilates classes. As it happened I was the only one who turned up so I was treated to a private lesson for a small donation which I found really useful. There was only one move that pulled on my abdomen in an unpleasant way and I told the instructor immediately so we moved on to a different move. I'd definitely go back if I was staying longer in Liverpool and Pilates is something I plan on trying again, maybe a postnatal session back home would suit me. 


The park open air gym equipment was a lot of fun and I dragged my mum along as well for a proper workout in the fresh air. There were 7 machines that cover most of the bodies main muscle groups and I decided we would do 1 minute exercise, 30 second rest 3 times for each piece of equipment before moving on to the next and repeating the pattern. They were a hip twister, push up/tricep dip bench, cross trainer, wheel spinner for arms, leg bucket thingy, side surf machine and a leg press. The next day I felt fine apart from my poor pectoral muscles from the bench!!! I will definitely go back before I go home. 



I also managed to do 10 x squats twice a day and 30 second wall sits on four days as well as swimming which I already blogged about (still amazed how much I was able to do!). 

This week is a tricky one for goal setting as I'm travelling back home on Wednesday and am expecting not to be able to do much on Thursday as a result. It's my birthday on Friday and am hoping to see friends Friday, Saturday and Sunday so going to do a little less but hopefully be up to a little more the week after...  

1. Aiming for two 1+ mile walks

2. One more outdoor gym session before leaving Liverpool

3. Gentle yoga or Pilates at home for 15 minutes minimum. 

4. 10 x squats twice a day and 30sec wall sit 3 days throughout the week 

So a little less than last week but I have a secret fifth goal in mind but will see how the weather is and how I'm feeling over the weekend eep! 

Thursday, September 3, 2015

Swimming with an ostomy bag...

I've been wanting to try swimming as one of my fitness goals, it seemed like a really good way to do some general all over body toning along with a little resistance and cardio work thrown in for good measure. I had set a goal of walking 2 breadths of the pool minimum as to be honest I had no idea what I would be able to do if anything and didn't want to get my hopes up and be upset if I couldn't do much at all. The other thing was the mental struggle of doing this. It would mean being in some kind of swimming costume or bikini with my ostomy bag in front of other people. I've had a few mishaps and as well as wearing something skin tight possibly showing my bag, I was so paranoid I'd have a bag leak or some other mortifying experience that would mean I would never work up the courage to leave the house again... 


I found a pin up style bikini that I tried on beforehand that did a good job of covering all the marks on my abdomen, my stoma and bag. I also made sure I wore it in the shower at home before braving being in public to check how it looked over the bag when it got wet as it can change how it sticks to your body and change colour/transparency. The home tests went well and the bag survived both showers and baths at home so today I plucked up my courage and went with my mum to a local sports centre and pool. 


Not only did I make it into the water and home incident free, I completely smashed my fitness goal! I managed 4 breadths of the pool (across and back twice), 2 sets of walking to the middle of the pool and back length wise and then 5 sets of walking half way, swimming the second half and then swimming the whole length back again. I'm so proud of myself!!! Funnily enough it was my shoulders that ached rather than my abdomen which felt mostly fine. My stoma behaved and the bag stayed securely in place and barely visible. I've devised some arm exercises to do in the water to warm up and cool down with next time and I'll write a little arm exercise plan for moving them without weights a few times a week starting next week too. I'm amazed at how much I was able to do at just over 5 weeks post major abdominal surgery and so impressed I had the confidence to even try as I was very anxious beforehand which often makes my stoma play up too. I will do my best to make swimming once a week part of my routine when I return to my own flat soon. 

Monday, August 31, 2015

Fitness Goals w/c 31/08/15

One thing I've really missed since April is being able to exercise and work out. I've gotten used to living a very active lifestyle with roller derby training for 6 hours most weeks, bouldering (climbing smaller heights but without a safety harness) for 2 hours a week and pole fitness for 1 hour a week plus a full time job, social life and other random adventures (including trying to do Insanity and T25 DVDs by the crazy fit Shaun T)! I'm not good at sitting still and resting in general, so I make a pretty terrible patient! One of the things I love about exercise is the way it lifts my mood and how pumped I feel afterwards. It improves both my physical and mental wellbeing as well as being a great way to meet new people and make friends. 

It's just coming up to 5 weeks post major surgery now and it's possibly a little early but I've decided it's about time I made myself some small fitness goals. I say goals as I appreciate that in very much feeling how I go and seeing how my body reacts to the slow introduction of exercise. I will listen to what it tells me and if anything pulls at my abdomen at all I will stop immediately. 

My goals are vey small to what I was capable of before, but I'm testing the water and am expecting some of these may be too hard while others not too much of a problem. I have very low energy levels so need to make sure o give myself 2 rest days a week to recover my energy and let my body heal. I don't want to push things too hard and burst something internally (hernias are really common with stomas in particular). I've decided to limit myself to 5 goals per week and I'll use this week as my baseline and adjust from there. 

1. Go to a swimming pool and attempt to walk (kind of bounce walk!) at least two breadths of the pool. The water will make a nice bit of resistance for me to push against whilst supporting my body. The biggest challenge here will be wearing a swimming costume or bikini in front of people with my stoma bag attached underneath...

2. Walk at least 1 mile on two separate occasions in the week. I aim to not do this on consecutive days. 

3. Try seated Pilates or very gentle Yoga and aim for one 10 minute session maximum of either. 

4. Try wall sits (photo below) and hold for a minimum of 20 seconds. Try and do this once a day for 5 days in the week with 2 rest days. 



5. Body weight squats (photo below). This is how I pick things up or lower myself to the ground anyway so I don't ever bend at the waist unless completely unavoidable. I've had to be very disciplined with this especially when it comes up picking up one of my 3 cats! My aim is to do 2 x sets 10 reps for 5 days of the week. Once in the morning and once in the evening. 


So wish me luck and let's see how it goes. I'll report back next Monday with a summary of what did and didn't work and a set of new goals which may very well be the same goals depending on how this week goes...! 

Sunday, August 30, 2015

How it all began...

So how did this all begin and what is the point of this blog... Well it's a slightly complicated story but I will start with what has happened this year. I started getting nasty, sharp pains on my right hand side at the front and back around where my kidney was. One day I was ok and the next day I wasn't. I went to see some clients in Cambridge just before the first Bank Holiday and collapsed on site. They arranged a taxi to take me to the local A&E hospital and had someone stay with me the while time I was being assessed. 

To try and cut this short they were expecting to find kidney stones, but instead found two lumps on each of my ovaries when they completed a CT scan. I was admitted to the gynaecology ward and that's when things really started to get moving. I have been complaining of stomach/bowel and kidney pains for literally over 20 years and was told it was IBS (irritable bowel syndrome). I have also had very heavy periods that caused me to pass out and have to miss working days due to severe dizziness and pain. It turns out after two visits to A&E and being admitted to hospital both times that in fact I have a very severe case of Endometriosis. I have popped a couple of diagrams below that give an idea of what this is but am happy to answer questions. 



Endometriosis as well as affecting 1 in 10 female reproductive systems and your monthly cycle also can have implications on the kidneys and bowels which is what has happened to me. My left kidney had pretty much packed up due to the endometriosis cutting off the ureter (the tube that attaches the kidney to the bladder). This meant that nothing could leave the kidney and it shrank and filled with water. The right kidney was also affected and was working overtime during all of this and it was a long term internal process that had been undiscovered inside me for many years. My bowel was massively impacted and damaged. When the lining of the uterus formed outside the womb each month, as well as forming around the ureters and kidneys, it also formed around my small intestine. Some was reabsorbed by the body each month leaving a lot of damage and scar tissue.


All of this has led to me having 3 life saving surgeries to try and put stents in both ureters to try and open them up and allow the kidneys to function (3 surgeries in 6 days in June 2015). I am waiting on test results to see if my left kidney can be saved still or needs to be removed. I also underwent major open surgery in July 2015 that was a joint procedure between urology, colorectal and gynaecology surgeons. They removed all 4 ovarian cysts, a "chocolate" cyst, all the endometriosis that was scattered throughout my pelvic and abdominal cavity, they disconnected one ureter and reconnected it to another part of my bladder as well as replacing the stents and had to remove around 10-15cm of my small intestine. This has left me with a stoma (what is called a loop ileostomy). Basically my large intestine is a loop connected internally to my rectum and is not part of my digestive system at the moment. My small intestine comes out through a hole in my abdomen to the right of my belly button and I have to wear an osmotic bag which needs emptying a number of times a day and completely changing every 1-3 days. I was not told that this was going to happen beyond a quick it's very uncommon so you don't need to worry about it and it has been a nightmare to adjust to mentally and physically so far, but I am trying my very best.


Anyway that's the basics of my surgery. This blog won't be particularly witty to read and may have some photos and descriptions that people may find disturbing as they will possibly be of a sensitive surgical nature. What I am focused on though is getting back to peak fitness and hopefully surprising where I was pre surgery. I was very active and enjoyed playing the full contact sport roller derby where I was a jammer as well as indoor climbing and bouldering plus pole fitness. It is my intention to be able to do all of these sports again and far more both while I have my ostomy and hopefully after it is reversed. This will be my journey back to health...