A Three-Year Update
Apologies, this three-year update should have been posted back in February. With my Ulcerative Colitis flaring, it’s been difficult to put everything into words.
When I’m unwell with my Ulcerative Colitis, I can be overcome with the negativity of living with a chronic illness. And although that can come with a bad situation, I didn’t want to write feeling so overwhelmed. Similar to last year’s update, I wanted to update events in the hopes this will help others.
Medication
When I last updated, I was about 6 months on a new drug called Humira. I administer this myself at home with an EpiPen. Although I am currently flaring, the Humira has been such a huge help. Looking back I feel so silly for being so apprehensive about it.
Last year, I was pretty much handling it as best I could, as contact with my IBD department was pretty poor at the time. I’d email and never get a reply. I would call and leave messages without hearing anything back. This is dangerous to do. However, I found it easier to give up trying because of the stress of it all.
What I didn’t realise was I wasn’t getting regular blood tests. They are needed to check the Humira. And I could have ended up a lot worse off. Thankfully two new members have joined the IBD team. They are fantastic and I feel as if I can open up to them more than I can with my consultant.
My consultant decided to take me off two medications last year; Octasa & Azathioprine. I was very determined to stay on them. I listened to her, ended up coming off them and it has left me currently flaring. I’m due an appointment with her soon which will be interesting.
Constipation
Not the most loveliest of topics to discuss, but it’s something you wouldn’t necessarily expect to see a lot of IBD sufferers go through. If you have IBD, it is something to watch for.
I recently had a huge problem with this. I genuinely thought I was doing well and I was starting to go into a remission period with the Ulcerative colitis. It was so upsetting to find that constipation was the cause of it all. It meant spending three weeks on laxatives, missing work, being housebound and generally going stir-crazy with the pain.
This then led to finding out I was in the beginning of a flare-up. I am finishing a short course on steroids. As I come off them I’ll see my consultant and hopefully get something else in place.
Flare-Ups
This is where Ulcerative Colitis is uncontrollable. Even with the smallest bit of inflammation, it could still have a significant impact.
The thing with flare-ups is the unpredictability. I look, sound and could be fine before I get a wave of nausea, and cramping, and lose control over my bowels. Accidents are probably the most upsetting thing about having IBD and it does impact your mental health.
Depression & Anxiety
Anxiety is something that I struggle with. Getting nervous or anxious can be a normal feeling so I always played it off. After being diagnosed and as I’ve gone through my journey with Ulcerative Colitis, I think to myself, I’ve felt like this before I can just brush it off. I’ll focus on something else and ultimately distract myself from it.
Having CBT last year helped me a lot with dealing with the anxiety. But this time around, it has been harder. There are moments where it’s so unexpected and strong, I cannot control it. My GP introduced me to Propranolol to help.
I still have problems driving the car. To be honest, I have problems getting in the car. Since last year, I’ve had two more jobs, working two at the same time again and I’m currently working a maternity cover in admin.
Although my anxiety and overall mental health aren’t brilliant, I can’t afford to not work. There isn’t a lot of support for those with incontinence issues. Having a management team that understands is golden. You do not have to tell your management if you have IBD but in my opinion, it helps you destress in the long run.
Dietitian / Weight
There hasn’t been a significant change with my dietician. The main thing we’ve done is eliminate and reintroduce foods to see if they helped my flare. With constipation and being in a flare, I’ve completely cut out red meat, cut back on a lot of high-salt foods and increased my fibre intake.
Age
As another birthday approaches, I look back to last year’s update and feel my heart on my sleeve once more.
With the anxiety being at its worst, the feeling of being alone as I get older increases. Yes, I have wonderful family and friends. But when I see what I have to offer someone in their life, I feel guilty that Ulcerative Colitis comes with that. It’s something to work on, but it does keep me up some nights. I know there are fellow IBD sufferers and others in the disability community, who experience the same feelings.
I write these update posts now and then but many people dedicate their blogs to Crohn’s & Colitis. So Bad Ass is an amazing blogger and writer who discusses IBD professionally and socially. I would highly recommend popping over to read her posts.
As always, thanks for reading…
