Showing posts with label chronic.. Show all posts
Showing posts with label chronic.. Show all posts

Wednesday, 24 May 2017

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  

Wednesday, 24 June 2015

Katie's Health Update #7

I didn't realize my last health update post was in March!! OPPS. I did write some health update HERE in May in a life lately post but I haven't really gone into detail about everything health wise.

image from pinterest 



COLITIS
I haven't really got any updates on my Colitis as I am still waiting on having another appointment with my specialist. I'm on Asacol 400mg twice a day which have been working but in the past two months I have been having flare ups more often than I was before. My symptoms of this is abdominal pain, blood loss when passing stools and loss of appetite. I feel sort of stuck as in March I was diagnosed put on medication and that is it, I am still waiting for a follow up to get more answers. 

AS/ARTHRITIS
It's been over a year since I was diagnosed with Ankylosin Spondylitis which I wrote about HERE and to be honest I have literally only just been able to learnt to cope with it. My symptoms are back pain, stiffness, joint pain with most recent being my right write and fatigue which makes me have zero energy. I'm on Co-codamol 30mg/500mg  x 2 three times a day, Tramadol 50mg x 2 twice a day and my latest medication is called Gabapentin 100mg x 2 three times a day and also Voltarol Gel which I apply to my back every night before bed and also on any joints which aches/when needed. It is alot to remember and I'm forever going back and forwards to the doctors and chemist but touch wood this medication routine is doing the best it can do. That isn't to say it don't hurt because it bloody hurts so much but I think I am getting better at dealing with the pain. I wake up every morning stiff without doubt and it takes about anything between a hour to two hours before I'm not stiff. Hot water bottles are my best friend when I'm having a bad flare up but also a good old cry helps haha. The fatigue and lack of energy has been the biggest thing to deal with lately. Although my insomnia has gone which means I am getting a good amount of sleep and waking up at 8 am every morning without fail, I am feeling so tired and no energy during the day and lately I have been making myself stay awake and do something because before I was going up to my bed and falling asleep and not waking up til early hours of morning which was making me crazy. 


Other illnesses stuff.. I will do another post on my depression, anxiety and panic attacks otherwise this post will be so long ha. Although it has been a few months since my last health update, not much has changed to be honest. Apart from one new medication, colitis getting worse and pain in wrist. I have an health assessment next month which I am very worried about to be honest, even though I know I'm clearly not well to work but I panic sooooo much. If anyone has had or have any tips on this assessment please let me know. This no energy is meaning I am taking double the time to do simple tasks so a normal few hours of basic housework lately is taking me a whole day. Once my morning Tramadol kicks in I literally try and do some housework and literally soon as I feel the painkillers wearing off I will stop and try and rest but some days the painkillers don't do their job. Another example is this post, now this would usually not take me long but I started at lunch time, had to sit down for over an hour then I have to sit up and down and so on and now it is 4pm so 4 hours to do this post grrrrr. I promise I will not leave my next health update for so long next time :)


Love Katie x 

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