Explore the blog
Thursday, 1 August 2019

Where I've Been & This Years The August Review

Well, this is a familiar blog title...

It's been a while since I've blogged about...anything and I thought I'd put a post together explaining why before hopefully getting back into a routine.
This is something that I of course wanted to do sooner, and I hoped to have written it differently than what you read today. I wanted to have more answers but I'm currently being pushed from pillar to post again and have a wait to go.

As the colitis, and my mental health as a result, hasn't been great I've had to put a lot of things aside and my blog was one of them. I feel people across many different platforms have often described themselves as having "different heads". For example, having a head for work, one for family, one for a hobby...etc. My blogger head has been going crazy the past few months. I had over 30 blog post ideas drafted or ready to go since Mother’s Day. Some being occasion related, others about my Invisalign journey and I feel like I've missed out on something that's a huge part of me. The past few months my "different heads" have merged into one where I haven't been able to take my health out of the equation.

Where I’ve Been

At home. Pretty much. Ulcerative Colitis is a form of IBD or Inflammatory Bowel Disease and the basic of it, is that it leaves you unable to control your bowels.
As I previously said, I've done posts on this before, but I've always tried to put a clinical or a so-so spin on it and be as positive as I can on my situation. I won't be as lighthearted about it today.

Just to say; This topic isn't the nicest to discuss or read about. I completely understand if it's something you decide not to read.

My Current Treatment Plan

I am currently on Octasa, Azathioprine and fortnightly injections of Humira. This is keeping my Ulcerative Colitis “under control” but causing a whole host of other issues. Just over two years ago I ended up flaring after my consultant decided to change and take me off some of my medication. When you flare you are prescribed a 6-week course of steroids to get the inflammation under control. Sometimes you have two 6-week courses. I was on a high dose for just over 9 Months out of the 10 and a half months I was flaring. It took almost 6 weeks to get an appointment, to get them to believe something was wrong and it’s led to a lot of trust issues with them.
I soon came to find I was having issues with Proximal Constipation. I was told this was because of the amount of medication I was on but any time I try to lessen the dose or come off any, I flare. What is the solution for this? Laxatives. This puts me back at square one like I am in a flare anyway.

What's Been Happening 

This year I said enough was enough, after my flare and with me still having issues I went to see my GP. I asked for another option and instead he emailed my consultant telling her everything I've said before in previous appointments… Genius, right? Except my consultant never got the email. She is never there. I’ve been seeing a nurse or a registrar and relaying the messages to her through them. I always get a letter from my consultant saying that my current “treatment” plan was to continue and then there is no other discussion on the subject. She has told me before that I am only supposed to see her once a year and when I have problems and I try to get appointments with her, I’m routed through every tom, dick and harry instead.
So, it’s fair to say I don’t have a brilliant relationship with her. The doctor who is supposed to be in charge of my treatment, won’t listen to what my body is saying, won’t listen to the amount of pain I am in or even comprehend that I am so depressed I no longer want to be here anymore.
When I saw the registrar, I was so distraught with everything going on she referred me to another consultant.

As I’ve been referred so many times to other departments and seen many medical staff at my hospital I sent an email to my new consultant and I’m going to put a little bit of it here to show what my current day to say life is like as well as my current state of mind:

 “I am writing this email today as I have been referred to you for a second opinion regarding my treatment for Ulcerative Colitis. Over the past 5+ years of having the disease I have met many different nurses, consultants and registrars that always ask what I am doing there when I come for the appointment. I wanted to put forward what I am looking to get out of meeting you on the 22nd May beforehand as I don’t like to take up the time someone else would better benefit from. I’m currently being treated for UC with 8 x 400g tablets of Octasa, 3 x 50mg tablets of Azathioprine and a fortnightly injection of Humira. These medications have kept the colitis “under control” according to markers but left me with Proximal Constipation. As a result, over the last two years I have been on and off a variety of laxatives that I now cannot leave my house without them and I have become dependent on them. I have been on / are on; Moviprep, Picolax, Movicol, Senna / Senokot, Lactulose and Dulcolax. I’ve even been prescribed enemas to help relieve the constipation. I am now 27 years old with no quality of life. I am looking for someone to help me…”

It wasn’t the best start that I had no reply to this email. I had to chase up it was received by the new consultant. The only saving grace when I came in was, he had read up on what was happening but still wanted me to reiterate everything. I was there for an hour and it was concluded that I’d have to have another colonoscopy and be sent for a seh-cat scan.

I’ve had more appointments so far this year than I have any previous years, but I still find it hard to trust. I spent an hour saying that I suffer with proximal constipation and I’m having a seh-cat scan to test for bile acid malabsorption. Something that occurs with diarrhoea symptoms I’d explained that occurs for me because of high laxative use or coming off medication. I’m still waiting for the results of the scan, but I personally highly doubt it will be that. My colonoscopy results have come back normal. 

What’s Happening Now

Well I’m still exhausted. An average of 4 hours of sleep a night. Consistent abdominal pain. Depression. Stress. Just to name a few.
I’m lucky I can work from home so my routine is to work every other day, sleep in between where I can or spend the day in the bathroom.
To leave my house I have to spend 2 days on laxatives and the day before starving myself because I can’t empty my bowels properly. Without doing this I have a higher risk of having an accident. I carry a kit with a change of clothes and a hot water bottle (no matter what the weather) as it helps with cramps. I even carry a small bin in the car which I can leave to you to guess what it’s for.

I went to Wales with my family for a week and I managed an hour in a town, 2 hours at the beach and 2 evenings at the pub right around the corner. The rest of the time I was in the house we were staying at alone, on laxatives and starving myself to get out those few times. Upset because I saw my family go to castle ruins and historical sites, I chose for us to do.
I’ve missed out on many blog events and will continue to miss out on the lovely Christmas ones I’ve been invited to. 
I haven’t been able to go to the dentist; I had an appointment in May I had to cancel and haven’t rearranged because I can’t get two days off together to go without my health being the priority of taking that time off.
I lost a lot of friends over the years but even the ones I thought would stick with me through this until the end are never around. I unfortunately lost my grandfather last June and I had the messages of condolence put on Facebook or Instagram but not one came to see me.

As of this post going up, I am still at home waiting for a very important appointment with a specialist that is scheduled for October, but I am hoping on a cancellation and to be seen sooner. I’ll update you more on that when I can.

Will I Keep Blogging & The August Review

Short answer is yes, whether I can get back into a routine, I'm unsure. I have plans for The August Review but I will do a post every other day instead of everyday.
I blog because it opens discussions with others about things I like. I can't change my scenery, but I can keep my mind from being overpowered by my health issues.

I do hope you continue to carry on reading these posts on my little space here on the Internet. I hope even more that I can talk more to some of you. I'd love to see what you think about some of the products I have reviews coming up on. 

As always, thanks for reading...

Would you like to comment?

Latest Pins