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Wednesday, 19 July 2017

6 months with Crohn's Disease

Its been a strange few days, my minds been all over the place and not sure why so i thought id do something that iv never ever done before and write it all down, this then turned into a list on my laptop that then developed into a blog post. I blog for my creative side but never for personal reasons. This blog post has sat in my blog account unpublished and its taken a few weeks for me to think bugger it, lets post it. You have all seen my pictures and posts on social media the past 6 months so why not let everyone read my side of the past 6 months, when it comes to my Crohn's. Of course I could extend on a lot of what I'm saying but that would make my blog post even longer so Iv just included what Iv thought is important. 
  The break up with my fiance does have its part too but with respect to her and her family, there's no need nor reason to go into that. We both have different recollections of how and why things happened so its best left there. The past week or so has felt weird. For 6 months iv been working so hard physically and emotionally trying to get better and get myself back to living a normal life. I have again, won yet another battle with a Crohn's. I have seriously lost count now the amount of battles iv faced and over come, every time i come out the other end as the winner i feel and think to myself i cant face another battle. I then sit and think am i actually winning each time or is it taken a piece of me away each time that now sitting here tonight i feel i cant fight Crohn's again because if i am forced into another fight, i'll lose. However this time, I feel its true, the past 7 months have been hell, but looking back its the past 13 months that has been hell - when it comes to my Crohn's. When i think back to what iv gone through with just this latest fight, i know i cant do it again, i cant fight it, i don't have the strength to fight it and sometimes i feel i don't want to fight it. Funnily enough i can be a very emotional guy, but very few see the emotional side of me when it comes to my flares up, I can only think of 3 people the main one is my Mum, i can be in hospital, lying in the bed and she walks in and I burst into tears and they don't stop, they flow, well actually they don't flow they flood and don't stop till i have a banging headache. Part of that is cause i know in myself i cant hide anything from mum, Mum is my world, We are so close, and do lots together and spend time together that will be the reason she is the one that gets the brunt of my moods. I never mean anything by it, she has and does do a lot for me. Being so close is probably why she gets the brunt of it at times. She knows when i'm putting on a brave face so i don't even attempt to hide my feelings, i couldn't if i wanted to, like i say they just flood out. The only other 2 that have seen this side of me is my Auntie (& Godmother) Jayne and my little cousin Louise. They haven't seen it as much as mum has but they 2 are the only 2 where my body seems to feel comfortable with them so my emotions just flood out. I have to say that this time round, my other cousin (& Louise's brother) Daniel, he seen it this time and by god he seen it big time on one of the days. Why fight it? i cant. I'm a male and i'm 32 so why does that mean i have to hide the tears? don't get me wrong i do hide them from many - the rest of the family, friends, work colleagues basically everyone other than Mum, Jayne and Louise. So going back to being at the point where i can live a normal life now, it doesn't feel like a normal life, for nearly 2 years right up until Jan this year my normal life was with my ex and her wee boy. That was my life, that was my normal life so now i have to get used to this new but different "normal" life again. Iv been single for 6 months but i never had time to think about it or dwell on it or even grieve about it. I went straight from breaking up right into ward 2 of Ninewells hospital where every single nurse and Dr i came across were fantastic. if it wasn't for the healthcare assistants and nurses in ward 2 i would of cracked a lot sooner. They were so much fun, up for a laugh but at the same time, so understanding. When it comes to Crohn's your dignity goes out the window years prior and i never felt embarrassed around them. I was poked and prodded with lines being inserted into my body, TPN feeding being pumped into my body 24/7 to get my weight up. I had lost so much weight with the lead up to the end of 2016, so many people at work where commenting on how unwell i looked but i did feel OK, i really did. I never seen the weight loss myself, but when you see your self in a mirror on a daily basis you never notice the changes in your body. It's not until now when i see the odd pictures from my works Christmas night out that i think "oh shit, i look awful. Was i really that underweight and unwell?". The simple answer to that was yes, i was very unwell, so unwell which was why i had to have 5 weeks of intense TPN feeding. My surgeon who specialises in the bowel and gut and who is my angel was brutally honest and said my body wouldn't cope with another operation so big at the weight i was so i had 1 week of feeding into a line straight into my main arm vein for 24 hours a day for the whole 7 days and a further 4 weeks of feeding during the night for 12 hours. I'm telling you, trying to sleep in hospital is bad enough (and yes at 32 y/o, i still take my own pillows) but when your attached to tubing and a machine where if you moved and lent on the tubing, the machine would go off because of air locks. First time on night one is fine but at 4.30am where its just gone off for the 47th time is hell now carry this on for a further 4 weeks, well no wonder i was sleep deprived. TPN feeding was so full of nutrients that this caused it to be so full of bacteria that the who area of where the tubing entered my body had to be extremely clean and it was like an operation in itself just to connect me each night and detach me each morning. Everything, everyone and every area had to be scrubbed and cleaned with an inch of its life. That was nothing though, for about 5 days before i got my line in my arm - as i had to wait for an slot in the X-ray department to insert it. I had to have the feeding through a canula in the back of my hand but because of cleanliness and bacteria build up, a brand new canula had to be inserted every single day. The pain and rawness on the back of my hand was, well so painful, now this is coming from me who has a very high pain threshold. At least with the 5 weeks of feeding ended and my body was at a safe weight to operate on, the pain was over.........Or so i thought.
Photos of the canulas i had inserted into my arms. Strangely i have no photos of the line that was inserted in the upper part of my arm. 

The photo of myself was taken the week before my TPN started in early February and shows how unwell i was.  Then the 2nd photo of myself was taken 5 weeks later.

I was discharged for 2 weeks with the line still in my arm before being brought in again for my operation. While i was in hospital for feeding, i was classed as a priority for my operation, then when i was discharged for the 2 weeks, i was told i was still a priority and could be asked come in any day for my operation. So would it surprise you if i told you they forgot about me, when i contacted the person in charge of the beds, i was told i wasn't a priority because i wasn't an "in" patient with a bed, so others with simple procedures needing done comes first. Shock horror within these 2 weeks, i was losing all the weight i put back on. What a complete waste of money and time having me in for 5 weeks to be told i'm not a priority and i just have to wait. After several phone calls to the hospital, and keeping in mind i still have this line in my arm that's not being used and could get infected at any point, i get a phone call to say my surgeon - Miss Ziyaie wants me in immediately to ward 10. The carry on of being told i'm no longer a priority was nothing to do with Miss Ziyaie, she wanted to operate, all this time shes put into me for what? So only thing i can think of is she found out what was happening and how i was losing weight again so hauled me back into hospital awaiting the first emergency theatre spot to open up. This happened on a Monday and she operated on me on the Saturday afternoon into late evening. The 5 days in-between were spend back on TPN feeding getting as much weight back on me ready to operate. 

The reason she had to operate on me was because i had fistulas forming down the old scar line on my stomach and around my Illiostomy. Which over time had caused a large infection inside my body. Bet your thinking what are fistulas? Fistulas are when instead of my body waste flowing out the remaining part of my small bowel into my Illiostomy bag, it finds ways to escape via the surface of my skin. What first appears as wee absess's on my old scar line on my stomach, its actually body waste coming out. This time round, not only did i have large holes in my stomach oozing body waste and infection, the remaining waste was still travelling to my Illiostomy but it was pouring out from where my Stoma (Illiostomy) should join with the surface of my skin. As you can imagine this was not a pretty site and all this had been going on since around November. So they had to be fixed and sorted however because iv had so many operations over the years, the skin around my Stoma was all dead, nothing would heal or fuse to it SO Miss Ziyaie had to give me a brand new Stoma (Illiostomy) on the other side of my body. At that one time, i basically had 3 operations done in a oner, that will be why i was in theatre a lot longer than thought. She had to sort my fistulas, move and create a new Stoma for myself and then to clean and tidy up the old site of my original Stoma because it was so infected and the whole area was dead. i wont go into the other area of concern where previously Miss Ziyaie had to wrap my inside with fusible mesh which is used to prevent hernias. She had that to battle against too. But she done it, i knew she would and of course i was worried and scared, Iv been in this situation before where without her hard work and my consultants hard work, i wouldn't be alive today but i had no doubt that Miss Ziyaie would do what she had to do and always had my best interests and future in mind. If she had to do something i didn't want done, i knew she would of had to do it because it was what was needed to be done and save my life. Thankfully this time round, i wasn't faced with any decisions or realisations when wakening up from the anaesthetic.  The after care i received from ward 10 (surgical) was amazing. The really do give everything they have, yes you get the odd nurse that isn't very nice and you wonder why they are in the profession but the good ones out way the bad.
I briefly mentioned how good the staff were in ward 2 and also in ward 10. Ward 2 was where I felt most comfortable, there were a lot more nurses, junior dr's and health care assistants either the same age as me or even younger. Nurse and Drs can get such a hard time, they are going in on a daily basis on a very poor wage looking after each patient, but not just caring for patients in physical needs such as dealing with lines, cleaning wounds, mopping up sick and all the rest. They are dealing with our emotions too as well as the family interference. I have to be honest, my family are good, we all trust the nurses and trust what they do so we don't question them. I may ask them to explain the reasoning if they haven't already done so but I trust them so much to follow the Drs instructions especially when Iv been in for so long and a trusting relationship has grown in many cases. Christ, many of them seen me more than they seen their family's and friends. When they finish their shift whether it's an early or late or even night shift, 9 times out of 10 they are still there finishing off paper work. In so many cases and I'm speaking for myself here, the paper work required from them is ridiculous. There is so much they need to monitor and note that isn't necessary, all it's doing it taken their time away from the patient and taken time away from their personal lives. They are one profession that I whole hardheartedly agree that are understaffed and truly under paid. Don't get me started on the patients that for what ever reason are in hospital but are physically capable of seeing to their own needs, they treat the ward like a holiday camp and expect the nurses to do things for them that aren't acceptable - they are only acceptably when it comes to patients that can't physically do things for themselves. I was attached to a pole on wheels for 24/7 - doesn't mean I couldn't get up and go to the toilet myself. If I could do it myself, why would I lay there and have the nurses deal with me when they could be dealing with a patient who needs help with genuine toilet needs? I have a whole list of things like this but I'll stop there as I may say to much and get myself into bother. 
 I will finish this off by saying if your a nurse, a DR, a Jr DR, healthcare assistant or any NHS worker reading this, I take me hat off to you and to everyone who personally dealt with myself over the past 6 months, I owe you all so much for the time and attention you gave me. 

It was all over, the past 6 months have come to an end and its all about recovering and recuperating. I could go on with other things that happened and what i went through but lets Fast forward 8 weeks later to today, i'm feeling great, iv not felt this good in such a long time. Yes iv had a couple of blips but nothing that has set me back. I'm on track to returning to my job in food retail with The Coop in August. I should say The Coop have been brilliant and understanding which they have been but its all been down to my boss and store manage of the Carnoustie Coop - Lorraine Doig. I go back years with Lorraine who helped me climb the retail ladder to management before having to step down due to my Crohn's around 6 years ago. I was worried, i felt sick every time i thought about the amount of time i knew i would need off. I never ever thought i would be off for 8 months, that's the longest iv ever been off my work due to my Crohn's. Lorraine made sure and crystal clear that my job would still be waiting for me no matter how long i needed off. If there was to be any issues, she would go down fighting for me. Saying thanks to Lorraine will never be enough, ill never be able to thank her for all the support she has given me both professionally and personally. So i'm not sure if you will read this blog post Lorraine but if you are, i want to publicly thank you for everything.

Below are some photos of how my body looks at the moment, there will still be some healing to be done but over all this is my life and always will be. I'm not ashamed of my body its unique to me, its kept me alive. Yes id love a bit more weight on me and a bit more muscle but this will never happen, well muscle wont happen. Getting into a relationship is so hard because you don't know how the girl will react, all i can do is be honest and all i ask for is her honesty in return, if she feels its too much to deal with then tell me, I will respect her so much for her honesty. I wasn't going to post pictures of my body, i kept going back and fourth on whether i should or not then i re-read my 2nd sentence again where i said i'm not ashamed of my body. i thought to myself "well Craig if your not ashamed of your body, prove it, show it to the world". The joy of social media helps raise awareness of illnesses and conditions and brings them to the forefront. Its one thing reading about someones life with Crohn's down south or in another country but its a completely different aspect when your reading about someone you know, or someone you know of who lives in the same town as yourself and didn't know anything about this persons illness. Surprisingly 19 years after first having my illiosymy, i still get some people who in conversations with me, didn't realise iv been living with a illiostomy. 

As iv said above, it will still take some time getting used to normal life again but i'm so thankful to be able to be at the point where i can actually plan my life. I would love to focus my future more in the crafting market and work somewhere in the craft industry but in the mean time I'm looking forward to a long weekend in London where Mum and myself will be going to see Celine Dion at the O2. I used to get a lot of stick for liking her music, i don't anymore as iv never let things like this bother me, we are all individuals and we like what we like. Why cant a straight guy love the voice of someone like Celine Dion? I love her so much, that i will be going through to Glasgow 5 days later to see her again in the Hydro. Life is about living and having fun and enjoy the things that make you smile. 

Thank you for taken the time to read this very long blog post. This evening started as a normal evening. It then progressed with myself writing notes down that then turned into a full on blog post that i originally had no intention of posting. I'm more than happy for you share my blog post on all of your social media sites to get Crohn's and illiostomy's known more. 

Craig x

1 comment:

Hazel said...

Craig. Writing this post will have helped you so much. It's good to get it off your chest as they say! Yes our family have a lot to thank the drs and staff in Ninewells. Our son had his first Kidney Transplant done there, all his treatments and time he had to go on dialysis for a few years then his after care when he came back there after getting a second transplant and in the last 7 years they have been there when things are not a 100%. I to owe them for me being still here today after cancer. Folk think I am silly going up every month or so dropping biscuits and things for the tea trolley at the chemo unit. Our son does a lots of work with the
Tayside Kidney patient association. We have raised money for both them and the chemo unit.
Yes life is for living and not sitting moaning. You have to just get on with things. Yes things get on top of you now and again and you have to deal with it. Let your feeling out bottling isn't good. Hope you are well on the mend and yes your body is your body and if someone puts what it looks like over who you are they are not worth wasting time on them.