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 

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