Hi everyone! My name is Alice and I’m 20 years old from Lincolnshire.
I live with Ulcerative Colitis and other chronic illnesses. I had emergency stoma surgery in the February of 2022, and my ileostomy is called Coco.
Since the age of 15 I have struggled with my bowel movements, accompanied with lots of pain, although this was always something I kept very quiet. I started going to see my Gp to tell them the symptoms I was experiencing, I found myself being constipated for weeks at a time. And every time was just sent home with laxatives, with no referrals or tests. They kept telling me I was too young to have anything wrong with me, and the tests were too invasive. Years later I just kept coping with this, missing time off school which affected my GCSEs and A-levels. I began my dream course of midwifery at university when I was 18, I moved away from home and all my dreams were in hand. However, these symptoms became impossible to live with. I started bleeding heavily and going to the toilet up to 30/40 times a day. I was away from home, stuck in my university accommodation. I still hadn’t disclosed to anybody what was going on, because of the bleeding I was scared it could have been something more sinister. Again, I started going to the doctors telling them something was wrong, and I got the same response almost 4 years later. I got sent home, saying I didn’t have the ‘typical symptoms’ of most bowel problems and it would pass, so it wasn’t taken seriously. I rapidly became extremely unwell, losing so much blood, severely dehydrated, my leg broke in those weeks because my body was so weak.
Upon disclosing to my family what had been going on, they rushed me up to A&E. Within being at the hospital for half an hour, I had my diagnosis. Ulcerative Colitis. I was admitted and started on fluids, antibiotics, a high dose of steroids and was given several blood transfusions. We found out my bowel had perforated, and I was dealing with Sepsis.
By time I went up to hospital my large bowel was acutely ulcerated and there wasn’t much they could do to save this part of my digestive system. I was given two emergency doses of Infliximab to try to get this under control, although nothing was working. My large intestine was severely diseased and was ultimately killing me. I was given a booklet for surgery, and the next morning I was marked up and I went off to have my stoma made. I found recovery really hard, because I went into the emergency surgery so weak, I faced lots of complications post-surgery. I spent two months in hospital as a result of all of this. So, weeks after getting my ulcerative colitis diagnosis, I had the majority of my large bowel removed. Nothing could have prepared me for that.
But my stoma (Coco) was born, and I could start getting my freedom and dignity back. It’s amazing how my IBD pains were just taken away after surgery. I had post-operative pains, although I knew these were going to pass.
Instagram was a game changer for me! I hadn’t really known much about Inflammatory Bowel disease, and stoma’s because my diagnosis came so recently. Although instagram opened up a whole new world for me that I wish I knew before. I was instantly connected with hundreds of people that understand, I felt supported by people I didn’t even know. And everything didn’t feel so alien anymore. I saw people of all genders and ages showing off their stomas so confidently. It instantly put me at ease. It was amazing to see people show off their differences.Creating my page helped me grow as a person, be open and confident about my body.I wanted to give back what people gave to me when I came around from surgery. Sharing this online all helped me accept my stoma, and I learnt so much about my disability from others.
Social media is so important for bringing awareness about stoma life and digestive issues. There is a taboo surrounding talking about poo and bowel problems although it's paramount to be open about these topics because so many people suffer in silence, and this could save lives.There is so much to be talked about, with people who understand!
Throughout my whole stoma journey, the most difficult thing for me was to keep positive and improve my mental wellbeing. It’s okay to find this change really mentally challenging. With my stoma surgery being an emergency, everything happened so quickly, and it left me with little time to digest things. Unfortunately, nobody else can do that for you, that process needs to be your own. None of it felt real at the time, until I was home trying to independently cope with my stoma and learning how to live my new life. For me one of the biggest barriers was digesting what I had lost. I had to grieve my old life, and how I used to look. It took time for me to get used to seeing my medical device on my body. I really didn’t recognise myself. I lost so much weight uncontrollably due to malnutrition, then gained loads from steroid therapy. I began to isolate myself and didn’t want to be seen, but it took time, and I got over those things. Some days I’m still left angry and disappointed, but I grew with my stoma. My confidence grew, I am so thankful for my body and the battles it has fought for me.
I do think the anxiety around living with a stoma isn’t spoken about enough. I have been made incontinent, and can no longer control my bowel movements. So this can sometimes be worrying, and things go wrong on occasion. The constant fear of having a leak with my ostomy bag did hold me back for a while. But now I am confident with caring for my stoma, so I think the positives outweigh the negatives.
I got support for this and have medications to aid my anxiety and depression.
I got diagnosed with Pyoderma gangrenosum in the December of this year and have been struggling with it ever since. Pyoderma is an inflammatory disease resulting in your immune system damaging tissue in your own body, it can be linked with other autoimmune diseases such as IBD and arthritis. This skin condition presents in large painful ulcerations anywhere on the skin, for me I was mainly affected around my stoma site and my legs.
Pyoderma is a rare disease affecting 1 in 200,000 people in the UK. Because of this I struggled to get a diagnosis for months, I had to wait to see a specialist dermatologist. I was covered in puss filled blisters which developed into deep open wounds. These were extremely painful and within days they would have doubled size. I rely on strong opioids to get me through a bag change, which were once easy. The condition of the skin around your stoma is so important, and with my skin as ulcerated as it is, my bag changes have been made really difficult.I now have to dress these wounds underneath my stoma bag. The dressing stops the appliance from sticking well, making it hard to get a good seal around my stoma. This means I often encounter bag leaks. I was having discussions with my surgeon about moving the position of my stoma to allow this to heal. This took a toll on my mental health and confidence, as it’s not easy living whilst knowing your stoma bag isn’t fully secure, and the idea of having to go back to theatre. It’s been tricky navigating these wounds, as they weren’t responding to any treatment. So, after months of steroids and biologic trials I found something that worked for me.
However, my pyoderma is slowly but surely healing. So will one day hopefully be healed over and a lot of these issues can be resolved. Although this will leave a massive area of scarring. And I can’t be sure it won’t flare back up in the future.
Social media for me was the most important resource I used to better equip myself for my stoma journey. There are several Facebook pages and group chats for people with IBD and stomas, I joined a few and found these so important to my journey. I learnt so many things I couldn’t have found out elsewhere. Furthermore, my instagram was amazing to find tips and tricks from other ostomates. I find the most helpful information from people who have a stoma or been through similar to me. There is nobody who can tell you better than those who have experienced it. Everyone I have reached out to for advice has always been so lovely. Talking to like-minded people makes everything a little bit easier.
I wish it was better understood that my stoma was a treatment, not a cure and this is the case for a lot of people. I am grateful for my stoma, although things are still hard. Yes, surgery got rid of some of the side effects of my Ulcerative Colitis but then it brought its own. It is tiring, I am up through the night sorting my stoma and am constantly exhausted.
However, this situation is better than being stuck on the toilet and messing myself. I also wish people knew it was a good option. I have heard so many people say they would rather die than have a stoma bag. For me the minute I woke up from my stoma surgery my IBD pain was gone. I was no longer running to the toilet, feeling sick and being in extreme pain unable to leave the house. Having stoma surgery can seem like the end of your world, although it can be your opportunity to get your freedom back. You can still work, play sports and do anything you set your heart on. I now go to the gym and swim and for me this was something I never could have imagined before surgery. It isn’t always a negative thing, for me it still isn’t easy, but I would choose life with a stoma every time.
The thing I would tell my younger self is that all of this wasn’t my fault. I was made to feel like I was the problem, not my ulcerative colitis. My ulcerative colitis was inevitable, my lifestyle or diet choices couldn’t have stopped me from developing this. Although I was told several times I could have prevented all of this. I began to feel guilt, but in reality, nobody knows the exact cause as to why people develop inflammatory bowel disease.I always used to beat myself up for being behind others. My friends were buying houses, cars and had successful jobs, and I felt left out in all of this. But my illness has held me back and it was so unpredictable. I have spent so long now fighting to feel better, I haven’t had time for other things.
I didn’t bring this on myself so I never deserved to feel guilty for that, or the affect it has on others. My illness doesn’t only hurt me, but the people around me too. It’s hard to see them upset, but I became sick through no fault of my own.
Secondly, I really wish I didn’t keep my bowel symptoms a secret for as long as I did. I would reassure my younger self that it is nothing to be embarrassed about because I had a fear of being stigmatised at the time. Toilet habits are so normal to talk about and should be less of a taboo. For me, if I disclosed these things earlier, such as my bleeding, I may not have the need for my stoma bag that I do now. Talking to people about what I was going through would have made the whole world of difference to my mental wellbeing.
There is so much advice to give to new ostomates, as their life will have changed, and this takes some adjustment. One of the most helpful things I was told was to name my stoma. So, I did. This helped me massively when I was coming around from surgery. It helped me see my stoma as a friend that I slowly built a relationship with, not just an alien thing on my body. It makes it easier and less embarrassing to talk about by breaking down barriers. I would advise new ostomates to be patient and take their time. Recovery can be hard, and having a new stoma can be scary. Your body has just been through major surgery, which leaves scars both physically and mentally, especially if your surgery wasn’t planned. So be kind to yourself and your mental wellbeing, things will take time. There will be ups and downs as you start to accept this change, it's normal to experience anger, grief, sadness and disappointment. It’s best to surround yourself with supportive family and friends that understand your situation and will help you adjust to your new life. Or even use social media to reach out to others who have experienced similar.