Katie’s Health Update - Ulcerative Colitis

      (Been two more surgeries since this picture) 

Hello everyone :) as you can probably tell by the photo it’s Katie here. Me and Beth have soooo much to catch up on as a lot of life events have happened since we last was active on the blog. As from next week Beth shall have the laptop back and running so expect lots of blogpost about pregnancy and mum life but for now here is a post about my health. 

When we used to update the blog a lot I done a series of “health Update” where I would share how my health was doing. I can’t remember the last time I done an update to be honest so I shall start with one of my conditions:

ULCERATIVE COLITIS- 

I was put on Predinisolone for my Ulcerative Colitis and safe to say I totally regret it. I had put on a lot of weight, got awful side effects and to top it all off it didn’t make any difference to my bowel. My Gastro team were shocking and left me few months without any medication. It was June the month of Beth’s hen and we

dding. The hen party was a cocktail night & seeing as I haven’t drunk at all for a good few years it’s safe to say that alcohol didn’t agree with me. It put me in a instant flare where that evening I spent crying in the hotel bathroom with zero sleep, the cramps were insane and the thought of food made me feel sick. We got back home and my IBD nurse advised me to go to A&E so off I went had some bloods and morphine then to be told go home and wait for IBD team to ring as it was night time. I was exhausted I went home and rested for a few days then it was Beth’s wedding. I felt awful the original dress didn’t fit I had to order new one week before wedding I felt awful and looked it. The steroid made me so swollen and puffy looking safe to safe I couldn’t of hated myself anymore than I did. The day went okay then soon as I eat the food that was it. Another flare left me spending most of the reception in the toilets. I missed the first dance, beth throwing the flowers and cutting the cake. I was gutted, exhausted and in agony but I just had to put on a smile and act normal in front of family. I had the girls for few days after as Beth and my brother went on a mini moon. I got back home and this flare wasn’t easing at all, it was the summer so heat wave didn’t help. We went out with the girls I tried to put on a smile but I was again stuck on the loo crying. I had enough. Enough of the IBD nurse/team not giving a shit *pardon the pun*. So I went to a&e again, had bloods, a canualar & morphine to be told my bloods were okay bit dehydrated and higher CRP but nothing they can do as it was nighttime aka no Gastro avalible. I went home angry, disappointed and physically drained. Finally I saw a new Gastro a few weeks after who demanded I went back on Steroids which I didn’t want to! So fed up I went to my GP and asked to be referred to another hospital. I was warned it could take months waiting but I was willing to wait. 

Yet again another thing I regret. The new Gastro is claiming I don’t have Ulcerative Colitis and it’s constipation. Now I’m no doctor or consultant but I know it’s deffo NOT constipation. I had to demand a Sigmoidoscopy which annoyingly by this point my Colitis settled down so not much was shown. I’m yet to see my specialist to discuss things but I’m so drained from everything that I’m yet to make the appointment. To be told you haven’t got an illness that you were tested so many times for and each times have evidence of it is so frustrating. Also in June I had surgery (bowel related but not UC) and recovery was harder than expected so I was fed up. 

I’m currently on no medication for my Ulcerative Colitis and weirdly am better. Not 100% but so much better than I was in the summer. I suppose I won’t see my Consultant til the new year and I so regret leaving the first hospital I was under. I feel like I’ve gone 1000 steps back from the days of being told it was just IBS. I have so much going on with my other illnesses that I haven’t really been bothered about this one if that makes sense. So much appointments, different Hospitals, lots of medication as well as brain fog so I’m finding it hard to keep up and jungle everything. Safe to safe I could do with a PA hahah!! Fingers crossed my Bowel behaves over Christmas as I don’t fancy spending Christmas Day on the toilet. Once I see my Consultant in the new year hopefully it will be a possitive appointment. I shall keep updating so do keeep an eye out and the next post from be shall be an health update on another condition of mine. 

I know these posts might not be everyone’s cup of tea and I totally understand but I think it’s so important to spread awareness and share your own stories. Me and Beth like to keep it real on our blog and we don’t pretend our lives are perfect. All of our blog posts are real life, honest and truthful. If you have got this far then well done haha. Thank you for reading and do come back for another post :)

Love Katie 

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  

Feeling alone By Katie

 

 

 

 

 

 

Feeling alone

 

 

At the weekend my health messed up a family fun day Saturday which made me rather sad and couldn't help but feel alone! 

When you have chronic illness you feel so alone. When I say alone I mean because I have no one in my family that suffers with a chronic illness similar to mine so it's genuinely hard to talk out loud about my health as they do not understand. Alone because most family birthdays meals I cannot attend because I'm either in a bad flare or can't eat anything on the menu so I'm left at home alone and I end up feeling so isolated. The one thing that really upsets me about missing family occasions is when I get certain family members saying that I'm choosing to not go out and that I don't want to socialise which couldn't be further from the truth. Of course I want to go out, attend all family meals or events and socialise but I've realised that you HAVE to put yourself and your health first. I've spent many times sitting in a restaurant putting on a totally different mask and acting fine when in reality I'm sitting there with stomach cramps, my joints are in crippling pain and my eyes are wanting to close from severe fatigue. The smile I put on in those situations is totally fake. How can I smile when I'm in so much pain. Sometimes putting on an mask and a fake smile doesn't  work in my favour! Unfortunately It makes some of my family members think that I am absolutely fine and that I am lying about being ill. It leaves me thinking what is the lesser of two evils? Grinning and bearing the family meal in crippling pain or putting myself first and not going and facing the criticism of some not so understanding family members.

 

The weekend just gone, I planned to go to Battersea Old Windsor Fun day on the Saturday with Beth, my nieces and my brother, we planned this ages ago and we was all looking forward to it. The evening before I got ready to have an early night then all of a sudden my colitis really flared up big time to the point where I was on the toilet from 10pm until 7.40am so I was incredibly exhausted from just running back and forward to the bathroom. At 8am I thought lets get an hours sleep so I can have some energy for the day out but soon as I closed my eyes, my bowel had other ideas meaning I had no other choice than to cancel the plans and stay in bed instead. I was so exhausted and the toilet trips continued till Saturday evening and I was home alone so I felt even worse and more alone. 

Luckily I have my three dogs who drive me mental but they follow me to the toilet, cuddle me on the sofa, always by my side in bed and make me laugh. I am so glad that I live with my Mother, something I thought at 24 years old that I wouldn't say but honestly I couldn't be without her. 

I really hope that my health starts to improve as I hate missing out on all these family events, I will be sure to keep you all update on my health and my story.

until next time

Katie x

Katies Come back ....Sort of

Oh god!! I have no idea where to even start!! I haven't written a blog post since late last year due to health problems and I have totally lost the blogging vibe.

I used to love sitting down either on the sofa or in bed writing about my health and lifestyle which also helped with my Depression and Anxiety because just to write and express what is on your mind feels so bloody good. So when I had to stop blogging it wasn't a nice feeling. I didn't bother on our Instagram or twitter, I just abandoned the blog and the whole social media side of things. At the time Beth was moving down nearer to me so I was just happy at the fact that I am able to see my Nieces whenever. Then there is the illnesses!! 

As you all know I have Ankylosing Spondylitis and Ulcerative Colitis which I have done many, many posts about and looking back I was somehow "managing" with my symptoms and side effects from medication. With the help of mediation and LOTS OF PAINRELIEF and hot water bottles, I could sit down and happily open the laptop but now things are abit different to say the least.

Since late last year, I have NOT been "managing" and life has became very different. If I could only use one word to describe it would be "Exhaustion". Exhaustion from every little task I do, Exhaustion from stupid simple things such as shower, wash my hair and even washing my face and also from taking the stupid amount of medication I have to take and just Exhaustion of being awake. End of last year I started getting pain in my thighs then my hips then my hands and now my knees. My mobility is poor and there are times where getting out of bed is impossible. Well I say "times" but I mean mostly every day. I struggle to sleep, I get numbness and tingling in most joints, my thighs feel swollen and throb with pain and now my knees which is the newest of symptoms. I wake up and from head to toe I am stiff. Having to rely on Morphine based patches to basically live is so depressing and yet I STILL get pathetic comments from certain people. I have had physio which made zero difference I mean  does it ever work? Especially with such conditions as I have, its going to take more than a few leg stretches to cure. So now I await to hear from various of specialist. The main condition this is all being linked to which I am being tested for is Fibromyalgia. Of course I have done lots of googling (who doesn't) and have read up on this condition among other conditions. From reading I have learnt that is it hard to actually be diagnosed with Fibromyalgia and have had few people tell me they was being tested for a year just to get the diagnoses so that bit scares me. I don't want it being dragged out that long, I just want to get sorted and start feeling better, I'm so exhausted from medical tests and hospitals.  

There is so much I want to write about but I can't get most out. That is down to Brain Fog, I will at some point do a post about this as it is totally life changing. My mind is mushed! and also down to the silly side effects of my medication. I will get Beth to proof read this because I struggle to make sense sometimes. I have given Bethany my laptop as it was no use to me anymore so at least she is getting use out of it but I plan to write posts on my iPhone on the blogger app or on my notes and then sending them to Beth as she is a lot more clever than me and will pick out all the spelling mistakes and the sentences that don't make any sense haha. Bethany sort of runs the blog by herself for the moment and also she runs the twitter, I run the Instagram for the blog as it still gives me a little input into the blog without it effecting my health. I have set up an new Twitter for myself so follow it if you want to hear me moaning about life or hospitals haha my twitter is @KatieAmyPricex but you can still reach me on the blog Twitter @Essextowindsor were I pop up from time to time, and Beth lets me know when there are messages for me.

I have enjoyed writing this actually but my legs are in pain, my patch is due for a change 30 mins ago haha. I am currently at Bethany's while she is at Sally's hair supplies getting some new scissors so one is on the laptop on the sofa while Bella has her nap and Ava is watching YouTube on the TV haha. I might try and get another post written if my body lets me. Thank you for anyone who has read this... and got to the end of this post and apologises if I don't makes sense!! Hope to see you all soon :)


Love Katie :)