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.