It’s good to see there are more treatment options available than when I was first diagnosed around the year 2000, around aged 7.
Unfortunately, all medications I had failed for me, which is why I ended up with my permanent ileostomy bag, but I am so thankful to my stoma.
What medication did you have?
Many of the things I experienced in the early days of my Crohn’s diagnosis are a bit blurry in my memory (I’m quite thankful for that in some ways). However, some things are still very clear and I have counselling to this day to help me find ways to deal with what I went through, as well as other things I struggle with mentally.
Steroids, Asacol & Mesalazine.
I was on steroids (prednisolone) for pretty much 13 years. In my experience, this is an extreme case as steroids as often designed for short term use in Crohn’s patients. My body became so dependent on steroids to the point where even tapering down half a tablet would often throw my body back into a flare-up and my tolerance to the drug also increased.
In the few years before my surgery particularly, intravenous steroids had to be used via a drip to get me over the worst of my flare-ups. Steroids are a type of anti-inflammatory drug, a group of medicines which are often tried first when trying to manage Crohn’s. I also had Asacol and Mesalazine tablets.
I also went on the elemental (liquid) diet on a number of occasions. This is where I had to drink medical supplements instead of eating food to allow my bowel to have time to rest from trying to digest my food when it was already angry and inflamed and hopefully promote healing. There were a few low residue foods I was allowed such as jelly sweets, hard boiled sweets & jelly, but I didn’t have an appetite anyway.
I found the elemental diet very hard and struggled to get the drinks down me. I felt quickly full, nauseated and often didn’t like the taste but I became severely ill down to being so underweight that it got to a point where my parents and doctors were begging me to drink them. I was told that otherwise I’d be put on a tube feed (NG tube up my nose and down the back of my throat into my stomach) so I hesitantly pushed on. I also found the diet hard mentally, as you don’t realise just how much food and drink are advertised around us until you can’t eat (even if you wouldn’t want to anyway from being in so much pain!)
Azathioprine belongs to a group of medication called “immuno-suppressants” as it targets your immune system to reduce the substance that causes inflammation. I took this medication in tablet form and my blood levels had to be monitored closely with regular blood tests, especially my liver function and white blood cell levels. Some people have a combination of drugs from this group as for some people this works better.
I took Azathioprine with steroids briefly, then had it on its own for a couple of years until there were warnings in my blood levels that my liver was becoming affected. Doctors then tapered me off this whilst introducing Infliximab (also known as Remicade), which also belongs to this group of medication.
Infliximab is one of a few medications within the immuno-suppressants group, which is known as a TNF inhibitor or biologic. It works by neutralizing a protein within the immune system as tumor necrosis factor (TNF). Infliximab is known as one of the stronger drugs for Crohn’s Disease and is usually given through a drip into the vein every 6-8 weeks over a longer period of time depending on the patient and how they respond to the drug. Some have it more often than 6 weeks and some less often than every 8 weeks. The treatment very much varies person to person and down to a number of factors such as tolerating side effects.
The side effects which were most noticeable for me on Infliximab were a stinging sensation in my stomach and bum when I went to the toilet for the first few days after my infusion, more frequent colds & being under the weather, hair loss, increased bruising & marks on my skin (they look like birth marks). In the later days on Infliximab, I experienced really bad joint pain and decreased mobility to the point where my Mum had to lift me in and out of the bath. The joint pain was the worst in my hips and knees but also affected my wrists.
I usually felt better within myself quite soon after the infusion and my appetite definitely increased to the point where I could eat without much pain. I also got some of my life back and independence and managed to do more things without not being able to make it to the toilet on time as I felt I had more control over my bowels. The infusions also used to make me feel drowsy and wiped of energy but this reduced within a few days after.
I had a colonoscopy after being on Infliximab for about a year and unfortunately, even though I had felt like my Crohn’s had improved overall and was definitely more manageable for most of my treatment, the scope showed it hadn’t managed my Crohn’s and the inflammation, ulceration and the depth of how far the ulcers went into my intestines had become more severe.
This is how I ended up with my permanent ileostomy, as well as surgeons finding a benign tumour on my colon when they operated.
I was not a candidate for J Pouch surgery either with my disease being so severe.
No two patients are the same with Crohn’s Disease
It’s important to remember that Crohn’s Disease affects everyone in different ways and different severities. Some medication that doesn’t help one person may really benefit the other and vice versa. There is no “one size fits all” approach for treating Crohn’s and unfortunately no way of predicting which treatments may be successful or not.
I’ve always benefitted from chatting to people within the IBD community. I met Stephen above online & he is known as my IBD Dad. He is a great support to me & thankfully doesn't live far away too! There are so many other people within the community who have become my friends & give me great strength & inspiration daily. I also have had chance to speak to other patients at the hospital I go to on a handful of occasions outside of speaking to medical professionals as you understandably get more empathy & insight into potential problems or questions talking to those who are going through it. I’ve always consulted a medical professional however when it comes to taking or changing my medication and if I’ve noticed new problems or a worsening of my Crohn’s.
Are you on any medication with your ileostomy?
Since 2011, I have thankfully been on no long term medication. I have had a brief course of steroids once for a small flare-up and besides having an iron infusion and liquid iron, I’ve not had any other medication with regards to my Crohn’s.
It’s absolutely amazing being able to live medication free & I value each day where I am flare-up free! Opportunities such as the Brand Ambassador shoot with Comfizz below wouldn't have been possible without my ileostomy.
There are more options...
There are more treatment options available which I haven't gone into on here & there are definitely more options available than when I was first diagnosed.
Crohn's Disease doesn't automatically mean you'll need surgery - thankfully there is plenty of things to try in a lot of cases before surgical intervention is needed.
However, for me & for a lot of people, a stoma bag doesn't mean the end. It is often just the very beginning!