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.