Lisa's Story
Hello!
My Name is Lisa Cummings
Hi, My name is Lisa Cummins, from Dublin Ireland. I’ve Crohn’s disease, a form of Inflammatory bowel disease. I was diagnosed in 2004 at just 18 years old. I’ve been a Montessori teacher the last 5 years and been working in childcare since my diagnosis. But because of my illness, I’ve been in and out of jobs, as I’ve either been too sick to hold down a job, had surgery or I’ve been let go. I love what I do for a living and at times having this illness makes working hard.
May 2015 I had my worst flare up imaginable. I developed a perianal abscess and a rectal vaginal fistula. I had lost 2 stone in six months. I knew something wasn’t right, my toilet trips were so often.
I had a check up with my gastroenterologist and I was admitted. I had numerous blood tests and scopes done to work out what was wrong with me. I was given an NG tube as my body wasn’t absorbing the nutrients from the food I was eating, Hence the dramatic weight loss. Now I love my food but to look at me you wouldn’t think that. Little did I know I was given this, as few weeks later one of the biggest events of my life so far was about to happen.
Fast forward 3 weeks, it’s now June. I’m still in hospital and no news of what is happening, until a few days later my doctor and the team came to see me and tell me they want me to see a colorectal surgeon – and that I may need a stoma bag.
My heart sank and tears ran down my face. I couldn’t believe it, I was going to have an operation and given a bag.
All that ran through my head was ‘Why?’ ‘Why me?’ I was blaming myself for all of this. I was always good at taking my medicine and watching what I ate as certain foods would upset my stomach. ‘What has happened? Why is this happening to me?’ For 11 years I avoided all of this. Not in a million years did I think I’d end up having a bag.
I was told this wasn’t any of my fault and that these things do happen. I didn’t want anyone else to know, I couldn’t tell my friends as I felt if I told them I was having one then it would make it more real. I didn’t want to admit it, but this was happening and there was no way to stop it.
I was marked for my bag by a stoma nurse a few days later and brought down for surgery the next day. I cried as I was wheeled down to theatre and gave my parents hugs and kisses. Since day one from when I was diagnosed both my parents have been so amazing and supportive.
When I got my bag my Mam was the first one to look at it as I was too upset and scared to see it. I’m very close to my parents and I am so so grateful for all they’ve done for me and continue to do. They listened to my team and learned along with me how to live with my stoma. Mam loves to help any way she can and likes to learn stuff about my Crohn’s disease and my stoma, as does my dad. She also helps me change it when I’m too fatigued or when my bag leaks. I dunno how I’d cope the first year if I hadn’t got them.
I woke up back on the ward a few hours later. After you wake up and look down and see this thing stuck to you, your heart just sinks and you can’t stop the tears. Stomas aren’t the prettiest of things, I know. But I think if you look long enough they can look like a rosebud or a tomato.
It does help naming them too if you want, I’ve called mine Sheldon (huge Big Bang Theory fan). I was in hospital for 10 days after surgery. But a total of 5 weeks over all.
I was so nervous when I got home, it took me a while to get used to changing my bag how to dress with it and learning different things about it. Oddly enough I adapted really quickly to it. I think from the support from family and friends, and friends who had bags too, I didn’t feel so alone.
It was hard, emotionally and physically as I tried to come to terms with living with a bag. But over time I’ve learned to adapt to it and yes there’s bad days and I get upset. But it’s second nature to me now, I’ve learned to dress with it, change some of my eating habits as I’ve learned not all food agrees with me eg mushrooms, popcorn, salad etc. (Now some people maybe different and their stoma be ok). I forget half the time I have it and night time used to be hard to sleep with it at the start but now I sleep great.
I’m now 2 years post op, but A few weeks ago I hit another bump in the road. I was badly dehydrated to the point of nearly passing out, vomiting too. My electrolytes where on the floor and had everything via IV drip including steroids. I had a pelvic MRI of small bowel. My Crohn’s had spread all the way around my large bowel and I had lost a stone in 6 weeks.
My surgeons have said it’s only a matter of time before I have to have my large bowel out along with my rectal stump and have bum stitched up. But I knew from day one I wanted keep it. I know it’s a huge step, I won’t lie I am scared of more surgery, but I can’t keep going back and forth to hospital and going round in circles of being well and then sick again. It’s so draining on my body, both mentally and physically. I know I can do this, I’ve a great support network around me along with my surgeons and IBD team, they are amazing so I know I’m in good hands.
For me the pros outweigh the cons, for others it may be different. I know there will be leaks along the way and sore skin, but I’d take that over soiling myself everyday to the point my backside is burning.
I’m keeping my bag for my sanity and for a better quality of life. I’m doing this for my future. I don’t want to spend the next 10 years locked in the bathroom.
I want to be able to enjoy my life with my partner, who I met 2 years ago, He also has Crohn’s disease and he’s been my rock throughout all of this. Even though having this illness is hard, it’s the only positive thing to come out of it. I met my soul mate. We both know how each other feels and have gone through the same things.
I just want you all to know that you’re not alone in this. The idea of surgery is scary, but life isn’t over after it. There will be good and bad days I won’t lie, I’ve been there and came out the other side.
I feel more confident in myself now than I did before my operation. I’ve had bad anxiety for years and spent much of those years always looking for bathrooms. I used to avoid going out, I always soiled myself too. I don’t want to go back to all that again.
I’m a part of a few support groups on Facebook called #IBDSuperhereos and also another called #GetYourBellyOut. They are an amazing campaign, that helps raise awareness about this illness and helps people like me.
It’s given me a place to talk to others going through the same thing. I no longer feel alone or ashamed of my illness. My life has changed so much for the better since having my bag.
Looking back on how things have changed over the years since being diagnosed and having my bag I never thought my life would be this way. It’s all made me the woman I am today. I’m strong and brave, even at times where I think, how am I doing this and I want to give up. So tired of hospital visits, check ups, needles, medicine, surgeries, life in the bathroom, I was too afraid to leave my house and mix with my friends, (I’ve a few close friends who’ve been very supportive throughout all of this) too scared of crowds incase of a leak or if people could see it. My home was my safety blanket.
But I’m now a proud ostomate, It’s given me my life back. I’m more outgoing and wanting to, hopefully travel more and see the world with my partner, (I’ve yet to go abroad and swimming, I’ve bikinis I want to wear so that will be a big thing for me but I know I can do it). Finally I also want to learn to drive. I can do all of this just one step at a time, now I have my bag, anything is possible!!