Being Diagnosed With Ulcerative Colitis
I was finally diagnosed, I have a form of Inflammatory Bowel Disease called Ulcerative Colitis. This is following my trip to the hospital where I had a colonoscopy.
Just to put a disclaimer. I’m not an expert and people have different views and opinions when it comes to IBD as there is no direct link to its causes. This is just my journey with IBD.
My Diagnosis
Thankfully the biopsies showed no signs of cancer or cancerous growths which was my worry.
To clarify a little more, Ulcerative Colitis is a form of Inflammatory Bowel Disease or IBD that affects the large bowel and rectum. It is a chronic condition that causes inflammation and ulcers. It’s a life-long condition, there can be periods of remission and times of relapses/”flare-ups”.
Ulcerative Colitis has various forms:
- Proctitis – Inflammation that is only found in the rectum.
- Proctosigmoiditis – Inflammation from the rectum to the sigmoid colon.
- Left Sided Colitis – Inflammation that begins at the rectum and continues into the left side of the large bowel
- Extensive Colitis or Pan Colitis – Inflammation that affects the entire colon.
What Ulcerative Colitis Does
The large intestine is responsible for stool changes. With Ulcerative Colitis, the inflammation causes loss of the lining of the colon. This leads to complications such as bleeding, loose bowel movements and abdominal discomfort.
The common symptoms of UC include: anemia, fatigue, fever, loss of appetite, loss of bowel function, weight loss, rectal bleeding, loss of nutrients and nausea. Ulcerative Colitis can develop at any age. But, it is most commonly found in people between the ages of 15-25. Men and women are equally as affected by this.
Treating Ulcerative Colitis
There is no cure for Ulcerative Colitis.
Though every case is different, treatment has taken leaps and bounds in the last couple of years. Treatment types can include; tablets, injections, intravenous treatments and/or suppositories.
One of the common medications that newly diagnosed people start out with is Mesalazine. Some may have very severe symptoms, and they start with surgery. An estimated 30% of patients newly diagnosed with Ulcerative Colitis have emergency surgery. This could be to fix fissures, resect part of the bowel or to form a stoma.
My Appointment
When I finally had the appointment to conclude everything, it was a relief.
Feeling so poorly for so long and coming in to find a plan, was a relief. I am very lucky no surgery was needed. As I am classed as having a moderate to severe case. I will need a check-up every three months with a blood test and discussions about how the medication is working. I have started to do better than I may realise. I’ve developed anxiety about everything going on, so I double guess myself a lot.
Starting Out On Steroids
Since the first hospital appointment, it’s fair to say that starting out on steroids was tough. They control the flare-up but the side effects can make you feel like they aren’t worth taking. During the first 2 weeks, I was fatigued and had muscle weakness. I broke out on my forehead, nose and chin, which isn’t the biggest thing. They’re just spots. But when you go through a stressful, emotional time, everything starts to frustrate you.
Steroids can affect your hunger. Even as I began weaning off the steroids, I still never felt full. It wasn’t like a starving feeling, more a dull hunger feeling. So I grazed between meals and in the evenings.
One thing to remember is that the boost you have is only temporary. Which sucks, but it doesn’t necessarily mean that you’ll instantly go back to feeling the way you did before. Having the same situation with every bowel movement. I have found that the “urgent” feeling can sometimes come up unexpectedly but you can hopefully get better control once your medication starts working.
Following with Octasa
I have been on Octasa tablets for nearly a month and off steroids for about 3 weeks. The boost from steroids won’t last, so fatigue was my main gripe.
Despite the side effects, I was very scared of coming off the steroids. In my first blog post about the beginning of my journey with IBD, I mentioned how I had been misdiagnosed for so long. In that misdiagnosis of IBS I was given tablets and told, “its trial and error to find the right ones for you”. I didn’t want to experience that again. On the steroids, I went out more and was able to feel like myself again and I came to have my confidence back. I may not feel the same on the Octasa tablets, but I have to see how it goes.
So far, I have been out with my friends more times in one month than I have for the past year. I will be honest and say I have had some bad mornings and bad spouts. Eventually, I will adapt to it all. I am just staying as positive as I can as I know this is something I will live with.
You Are Never Alone
If you feel like your alone in this, you’re not! I am always here if you want to message me or comment below. I find comfort in talking to people online in forums and on Tumblr.
One person in particular is Hanna, who has a tumblr called Life according to crohn’s. Crohn’s is a form of IBD and I found Hanna’s tumblr when researching. I found someone who got what I was feeling and her posts are informative, honest, positive and funny. Thank you, Hanna, for being there for so many people and being such an amazing person.
As always, thanks for reading…
