My Ulcerative Colitis Journey: Medications and Side Effects (PART TWO)

Following on from part one of the series (if you haven’t read it click here), I now want to talk about the types of medication used to treat Ulcerative Colitis and my experience of them so far. Now I’ve had my colitis diagnosis for almost 2 years, so I’ve trialled various concoctions of meds and have had ups and downs along the way. I’m in no way a medical professional, and what has or hasn’t worked for me might be completely different for other people, so this is just my own personal experience and how my body reacted with these medications. Just a quick disclaimer, you should always follow your medical professional’s advice, and this blog post is just to share my experience and is not advice in any way!

When I was first diagnosed I was given Prednisolone foam enemas to take every night before bed. Prednisolone is a type of corticosteroid used to treat inflammation by dampening down the immune response, so preventing the immune system to cause colitis. Usually, steroids would be prescribed in oral tablet form, but because my colitis was affecting the lower end of my colon, my consultant thought enemas would be more effective in treating the inflammation because it would get to the area directly. These enemas were SO bliddy painful to administer since it was basically squirting foam up my backside where I was very inflamed and bleeding. I did find they worked in reducing the inflammation and after a few weeks the bleeding did get slightly better but didn’t go away.

A month or so later, I was prescribed the Prednisolone in suppository form, which is a dissolvable tablet that goes into your bottom. On top of this I was also prescribed Mesalazine foam enemas (Pentasa). Mesalazine is a type of Aminosalicylate (5-ASA) medication which is anti-inflammatory. I had a lot of trouble with the Pentasa enemas because they caused a lot of abdominal pain, so I was then moved onto the Mesalazine suppositories. Again, I had trouble with the Mesalazine suppositories because my body wasn’t properly absorbing them due to the inflammation and swelling, and I often found they leaked, as gross as that sounds! They decided to put me onto the oral form of Pentasa, which my god, they are the size of horse tablets! Because I was on a high dose, I was given the larger tablets and they were such a chore to take since they were so hard to swallow. I continued the Prednisolone suppositories and the Pentasa tablets for quite a while.

For a short while I tried Sulphasalazine, which is another type of 5-ASA to aid my IBD associated joint pain but it made no difference, so I wasn’t on them very long. My Colitis fluctuated a lot for the best part of a year, with periods of no symptoms and lots of lapses back into a lot of pain, diarrhoea and bleeding. Every time I lapsed I was given a short course of Prednisolone oral tablets to push the colitis back.

Since the medication wasn’t pushing my colitis into remission, and it kept coming back, my consultant decided to put me on Budesonide oral tablets every day. Budesonide is another type of corticosteroid, which is fairly new in treating IBD, and is thought to have fewer side effects. Because I had been on steroids for so long, I gained 3 stone and was struggling with chronic fatigue, joint issues and generally feeling unwell, even when my colitis wasn’t playing up. Every time my steroid dose dropped, to try and slowly wean off them when my colitis was OK, it would flare straight back up. It turned out I had become steroid dependent, and my body was symptom-free only when on a high dose of steroids, and as soon as I tried to come off them, the inflammation would come straight back.

Being on steroids long term is never ideal, because the side effects range from insomnia, moon face, acne, susceptibility to infections and illnesses, weight gain, osteoporosis and more. Ideally, I need to come off the steroids, so the next step for me was to start on a medication called Azathioprine. Azathioprine is a type of immunosuppressant drug which has only been used for IBD since the 60’s. Because Azathioprine is such a strong immunosuppressive, I had to have a course of vaccines before starting it to make sure my body had some antibodies to protect itself while being on the medication, since I’ll be at much more risk of sickness, flu, pneumonia, suppression of bone marrow function, liver inflammation and pancreatitis. I’ve been on this medication for a short while now and have to have weekly blood tests to ensure it’s not causing damage to my liver. So far I’ve struggled with nausea, vomiting and terrible fatigue. They hope to start reducing my steroid dose after around 6 months of being on this medication, then keeping me on the Azathioprine long term to maintain remission.

If I’m unable to maintain remission with the Azathioprine or it causes damage to my liver and pancreas, I’ll have to go to the next step of treatment. The next step would be biological drugs which resemble chemotherapy. These drugs are things like Infliximab and Vedolizumab which are transfusions through a drip in the arm, or Adalimumab and Golimumab which are injections given into the thigh or stomach (kind of like an epi-pen).

There is a pyramid of medication starting with the ones which have the least side effects which are the first port of call so to speak, but this depends on how severe the inflammation is. Moving up the pyramid we try different medications to find what works in maintaining remission, and if the flare is moderate or severe, treatment may start higher up. The last port of call is surgery. If medication fails at improving the disease, people with Colitis may have parts of the diseased bowel removed, and then have a bag on the outside of their body. Sometimes if the flare is very severe, they may go in for emergency surgery. I’m extremely lucky my Colitis hasn’t went past moderate and mild. I’m hopeful that the Azathioprine will help me, but if it doesn’t I’ll have to continue up the pyramid and try something else.

Photo from -

If you have IBD, please remember your consultant really does know best, and they will help find the right treatment for you. If you don’t have IBD, I hope this blog was helpful and informative! 

No comments:

Post a comment