Toilet Thoughts

Hello readers.. 

I'm currently writing this as I'm sat on the toilet and I'm sure most people wouldn't want to know that but in reality this is my life. I have Ulcerative Colitis which if you have been following our blog since we started then you would know. If you haven't read our blog and don't know or heard of Ulcerative Colitis is then it's an Irritable Bowel Disease (NOT IBS) and this horrible disease means I attend the toilet basically 95% of the day. I get very sore joints because of this and also terrible fatigue so you can imagine sitting on the toilet isn't enjoyable.

I wanted to write this post because I swear some people think that I'm even making it up or that I enjoy suffering from Colitis! It's exhausted, painful & frustrating. I never have a proper goodnight sleep because for some reason my Bowel is more awake at night time. I never get to watch full programme as run back and forward to the bathroom. It's not fun or enjoyable having to sit on the toilet and for normal people when they go for a toilet they are not in pain but I am in pain. Everyone I open my bowel it is absolutely agony and I cry because of the pain. 

I sit on the toilet and watch people snapchats or insta stories and see people out having fun or not having to worry about to what to eat and it's hard to watch.. and I do feel about jealous of them. Then I go on Facebook and read people statues about their fun evenings and it makes me sad and angry. I look back and miss the old me. The old me who used to spend my evenings going out, drinking, eating whatever I wanted, was abled to have a goodnight sleep and literally having no care in the world. 

So when people say that I have an easy life being housebound, stuck on the toilet in pain and never having a goodnight sleep.... "easy" isn't the word I'd call it. I didn't choose to have this disease and I wouldn't wish this on anyone. I'd absolutely chose to be working, doing normal adult things and not having to be in pain over this any day!! It's hard to be positive when I'm stuck on the toilet, it's hard to be happy and not dwell on the past. But this IS my life and all I wish is for my health to be better and to gain my life back again. So yeah this isn't enjoying or fun and if anyone says it is then come and be in my shoes for a day and you'll soon realise how "fun" this really is!!! 

Love Katie xx

CCUK/Endoscopy Tour

Sooooo this is the first blog post I have done in a very very long time!! What better way to start blogging again by writing about something close to my heart..

On Sunday I went to my first ever Crohns and Colitis Meet up at the Endoscopy Clinic At Royal Berkshire Hospital in Reading and it was literally so amazing to meet and talk to people who suffer with IBD. This was my first meet at all so I was nervous abit and to make things worse Im flaring at the moment. This was rather different from a general "meet" as it was a chance for Friends and family of members of Crohns and Colitis Berkshire to see behind the scene and learn more about what us IBD sufferers have to deal with when we enter in Endoscopy area. I brought my Mother and Stepdad with me as I thought it would be a good idea to get them involved more and in hope that they can try to understand what I go through. I am glad I took them as they are two of my closest people in my life and I would love it if my closest ones understood and knew more about IBD from the endoscopy consultant.  

So we got there about 10am ish and we sat down with a cuppa in the reception area of the Endoscopy unit. Well I say sit down but what I really meant is that I ran straight to the toilet because Colitis doesn't like to behave well at the moment lol. We all had a cuppa and biscuits and had a chat/got to know each other for about 10 minutes or so. Then Professor Jon Simmons started the tour of the endoscopy clinic and literally I was so interested and amazed. He explained what happens from the minute you step into the reception to the minute you leave. He started by showing us the waiting areas which is separate for male and females, once you are undress you put all your clothing and items in a big "shopping basket"...you know like the baskets on wheels they have at some shops, well it was exactly the same as that which they take it with you all the way to recovery. Also in that area he shown us where you have the enema which is in a room attached to a toilet. Then onto the exciting area!!!! The Endoscopy operation rooms. Jon shown us everything from the equipment, the biopsy equipment, all the machines, the gas and air ect and he also explained all the different type of sedation which was very interesting. We asked him some questions then he switch on the machine and we all had a hold of the endoscope itself, took biopsy (with paper) and we was all in amazed haha. Then off we went to the recovery area which was male and female separate and explained how it works ect. Now this part was the best...the cleaning room!! So once the endoscopy is finished the nurse will take the dirty endoscope plus all the equipment to the cleaning room which was literally so interesting. On one side was full on sinks where they clean the equipment first then on the other side was the big machine which looked like massive washing machines haha... they put the equipment in these machine which is disinfected. Once the cleaning progress is all finished its comes out in a separate room so basically the dirty ones NEVER mix with the cleans ones. Then we went to see all the other operations rooms which one had a X-ray in and lastly we went to the room where you go and sit down once you have recovered from the sedation and all your obs are fine. That room is full of comfy sofas, a area for hot drinks and toaster and a little room joined to it which is for when they have the report of the endoscopy and the nurse goes through any questions you have ect and then you wait til you are picked up or drive home if you just have gas and air. 

We stayed in that room for ages asking Professor Jon Simmons lots of questions, we had lots of debates about the NHS and a general chat about life with IBD.  We was there for a good few hours and even my Mother and Stepdad learnt so much and got stuck in with asking questions. I literally felt alot better after talking to people who suffer the same as me as I finally was talking to people who know exactly how I feel. To be honest I was more happy that my Mother and Stepdad came and joined in because they obviously do not have IBD so its hard for them to understand me at times and sometimes they both have been judgmental in the past which I don't blame them for because unless you have IBD, its really difficult to understand. As I said at the start of this post that this was my first ever meet up to do with Crohns and Colitis so I was very scared but after it finished I felt more confident and excited to attend other meet ups. 

I learnt ALOT and feel alot less nervous now for when I have another Colonoscopy/Sigmoidoscopy. I am not under Reading Hospital so it was all new to me but after speaking to the Jon Simmons its made me ever more sure to be referred there. I am currently under Wexham Park hospital and ever since I was diagnosed in 2015 I have never had any progress with symptoms and they still won't try me on any other medication. So I think its about time to get referred to a new IBD specialist with a good IBD nurse support team and in hope they start me on new treatment and finger crossed I start to feel better. 

Thank you to anyone who has stayed this far and read this haha. Myself and Beth haven't been blogging properly for ages. Life got in the way and we put this blog in the back of our mind. We literally loved writing and reading other blogs and we both said its a form of therapy for us so we promise to try and get this blog back to how it was. 

Love Katie 
xx