What people with IBD should know

I'm often asked, “What would you tell someone recently diagnosed with Inflammatory Bowel Disease (IBD)?” So, this is what I think you should know! Look out for clickable links in this blog, leading to more detailed information! For many, a definitive diagnosis is a massive relief after a long period of being unwell. This does not mean that acceptance is easy, after all, you have just been diagnosed with a chronic disease which has no cure. Do NOT panic, we’ve got this, life is not over! It is worth pointing out that no two IBD patients’ lives are the same. The disease does not always manifest in the same way, and the fact that a treatment works for one person does not mean it will work for another. This makes IBD notoriously difficult to treat. That said, some IBD patients may have one flare, find the right medication straight away and never have another, and that is fantastic! For the rest of us, being diagnosed with Crohn’s Disease or Ulcerative Colitis may mea

My journey to stoma acceptance – 11 years, 7 surgeries and 3 ostomies later

My journey with my stoma has not been an easy one. Let’s rewind to my first stoma experience in 2007.

I got really unwell, pretty much overnight. After just two weeks at home, doing nothing but sleep, wake in agony, run to the toilet and then sleep again, I went to A&E. I was seen very quickly, diagnosed with Ulcerative Colitis and admitted to hospital for IV hydrocortisone. Less than a week later, I was taken for surgery to remove my colon due to the medication not having any affect.

So there I was, 19 years old, with this stoma that I was supposed to take care of, but I could not even look at without feeling sick. I’d never heard of one until my UC diagnosis the week before, and I certainly didn’t want one. I had been told it was a temporary thing that I could have reversed later, and that was the information I had clung on to.

I hated the stoma the whole time I had it. I went out and purchased jogging bottoms and boys T-shirts to cover myself up. During my first follow up appointment with my surgeon, the first thing I’d asked was: “When can I have this reversed?” He talked of the Jpouch and advised I start a family first if that was on my list of things to do. I desperately wanted to be rid of the bag. I had constant leaks, burnt skin, the bag wouldn’t stick, convex bags hadn’t helped and I hated leaving the house, so it wasn’t long before I asked for the surgery to go ahead.

After 2 years, I finally got my reversal! I could not have been happier. I knew the risks of Pouchitis, but I was sure we would deal with that if it came along, and then I would just carry on with my bag free life.

It wasn’t long before my first Pouchitis flare. It turned out I had antibiotic-refractory Pouchitis, which basically means that the standard antibiotics used to treat it didn’t help, nor did the commonly used probiotic, VSL#3. Prednisone helped, and I used it each time I had a flare for the next few years, until I became dependent on them, meaning every time I tried to wean off them, the flare returned. So, antibiotic-refractory, steroid-resistant pouchitis it was!

I moved on to Azathioprine and eventually achieved a 10-month remission before flaring again during a particularly stressful period in my life. I was due to start Infliximab, but my IBD nurse warned me that I needed to start considering having the Jpouch removed. I did not like this, so I asked to be referred elsewhere for a second opinion, and because if I was going to have more surgery, I wasn’t going to have the idiot that had done the previous ones do it.

Due to my anger and frustration at my body, and at everyone else on the planet, I took to social media to raise awareness (rant) about the difficulties of having IBD.
In my head, there was no way I could return to “bag life”. I’d decided that if it came to it, I would rather take my own life than have a stoma again. It is worth mentioning that at this point, I had been put back on a high dose of steroids to try and calm things down before starting Infliximab, and the prednisone messed with my mental state.

I didn’t expect the awareness raising to take off like it did, and before I knew it, I found myself immersed in the online IBD community. I “met” people with ostomies all over the world, that were proud of them, and grateful for them, and I started to think that maybe that meant I could do it too.

My referral, which was in July 2014, led to strictures being identified that I needed to be admitted for surgery for straight away. I was told I may wake up with a stoma, and I might not. We would just have to wait and see. Either way, I was relieved. I’d started to wonder whether it was all in my head. I had been complaining of pain in my small intestine for the last two years at my usual hospital and got nowhere. Before I went in for the surgery, a week after I’d have the tests which identified the strictures, I’d been forced into using Butrans pain patches, along with Tramadol and Paracetamol, just so I could stand upright and make it to work. My pain had finally been explained, and even if I did wake up with a stoma, it would likely be reversed again as it was believed that the strictures had been causing most of my symptoms, and not the Pouchitis.

I woke up from surgery in the recovery room, and the first thing I did was reach down to feel my belly. Nothing – a massive relief washed over me! Then I remembered the surgeon had mentioned it could be on either side. I moved my hand over, and there it was! I will admit, as much as other people with ostomies had made me think “maybe, I can do this”, my initial thoughts were still very negative. I remembered the stoma before and I felt sick at the prospect of that being my life again.

Recovery was pretty easy after the initial post-op ileus, and this stoma was so much better than the first. Nowhere near as many leaks, and it was longer and angled so output plopped straight into the bag rather than sticking around to seep under the baseplate. I was pain-free again, for the first time in what seemed like forever. I finally understood why people were grateful for their stoma. I even considered not having a reversal, because I was in a place so much better than before.

I chose to go ahead and have my Jpouch reconnected because it would satisfy the “what if?” I at least knew that if I needed a permanent stoma later, (and I suspected I would), I’d be OK. It was a really good 4 months.

Not long after the Jpouch was reconnected, the Pouchitis returned. I had to go through all medication options again, even though I’d had them all before. The IBD team were treating it as though it was a new pouch because it had been disconnected for a while. As I’d expected, the outcome was the same, and I eventually reached the point I’d been at before the last surgery. I tried Infliximab but symptoms remained the same, and the decision was made to remove my Jpouch.

I had to wait to be referred back to my surgeon because I’d not seen him for over 6 months and I had been automatically discharged. The wait was long, and for the first few weeks after the decision had been made to remove the Jpouch, I’d been researching alternatives to a stoma, such as a Kpouch and even a medical trial for Pouchitis patients. Emotion came at me in waves, and sometimes it made me feel sick and other times it made me want to cry. A bag for life. My whole, entire life… Would I cope? Would my boyfriend cope?

By the time the appointment with the surgeon came, it had sunk in properly. I’d done my research, looked at and ordered samples of multiple bags and additional products, signed up for newsletters and asked for advice online about the few things that I’d had issues with in the past, as well as the upcoming Barbie butt surgery and recovery. I was ready, and I had accepted that a bag for life was the only option if I wanted to be sure that I had just one last surgery. I was so ready, that even when the surgeon suggested leaving the pouch in so that it could be connected at a later date if I wanted to try it, I refused straight away. There was no guarantee that the pouch wouldn’t stay or become inflamed/ulcered again. Leaving it there would mean still having to sit on the toilet to empty the mucous the intestine creates, and I just wasn’t willing to do that.
Surgery came in October 2018 and was pretty uneventful compared to previous surgeries and post-op complications. I returned home after 5 days and began the slow recovery. It took a fair few weeks, trialling different bags, products and angles to get it right, but zero leaks happened, and the one issue with burnt skin I had was rectified with convex bags really quickly. When my weight was low the bag felt prominent, and I was very aware of its existence, but after about 2 months when my weight returned to normal, I often forgot it was even there. It just became the way I poo now, and that’s literally it. I thought I’d have posted more about it in the name of awareness, but it barely crosses my mind because it feels so normal to have it.

Bag changes take no more than a few minutes, every other day after I’ve had a bag free shower, and I don’t take an emergency kit with me in case I need to change my bag when I'm out, because I am confident that I won’t have to. 

My stoma enables me to be a lot more like the “normal” everyone else seems to be. I can eat pretty much anything and go out without having to second guess everything, have a plan for emergencies or get myself worked up in advance about whether I will end up in too much pain to act like I'm OK. I can go to the pub, drink alcohol and dance the night away, none of which I have been able to do in the last few years. I even find myself having a dance around the kitchen when a song I like comes on, just because I can! 

I feel more like the me I should be with my stoma than I did without it, and in hindsight, I wish I hadn’t had the last one reversed.

Also, thanks to high waistbands being popular at the moment, I can just pick up any normal jeans in a shop and wear them with whatever top I want without a thought. I purchased loads of ostomy underwear before surgery but I barely ever wear it. I’m not even fussed if people see my bag through my clothes on occasion because everyone knows it’s there anyway, and those that don’t can ask about it if they want to.

It is what it is, and I am what I am – and it’s just how I poo now. *shrugs*