My disease is Ulcerative Colitis and it is going to be mine forever!
The time feels right to start raising awareness and sharing my story because my disease is not going anywhere, and it certainly is not going to beat me. Please don't let the title of 'My disease' scare you off because I want these posts to be knowledgable, helpful and informative. Having a chronic disease has become part of daily life to me, I want to write these posts to share my experiences and not feel isolated throughout.
Blog post number 4 in this series leads me onto my personal experience of how my Ulcerative Colitis was treated. Before I begin properly, I want to stress that what didn't work for me may have worked for others and what did work for me may not work for others! This disease is very personal with no set cure, finding a treatment that works is trial and error but you have to have faith in trying a whole range of new things. Due to funds raised by Crohn's and Colitis UK, developments in treatment are growing and more money means more research to find a cure.
I completed a sponsored walk this year to raise funds for C&CUK. The link is below if any of you wish to have a look or even donate, every little goes a long way!
https://www.justgiving.com/fundraising/thesbstakeonuc
So my medication...
Having UC you have to come to terms with the fact that every day for the rest of your life, you'll probably be taking various tablets. Not the greatest thing to be doing but you know if its going to help, it needs to be done.
When I was first diagnosed in March, I began taking Octasa (commonly known as Mesalazine) which is an anti-inflammotary drug given to a lot of IBD patients. I took 4 a day for the first month or so and didn't really notice any side effects. I was also on steroid foam enema which I had to use twice a day for two weeks, then once a day for two weeks and it wasn't a fun experience. As it was thought I only had proctitis, the goal was to tackle the disease at the bottom which was why enemas were chosen as it would directly reach the inflamed area. Enemas aren't enjoyable but after a while you just get used to it! I took this medication for a month and saw absolutely no difference to my symptoms. When I explained this to my consultant at the time, he simply told me to 'change my diet' and check in 'when I was available'.
Long story short, I was left for around 4 weeks with no working medication and no idea of what was happening inside as he made me think it was only a minor problem. The weeks I was left with nothing calming my Colitis made it so much worse to the point I knew I wasn't stupid, I was really ill.
I'd say it was around May/June time now and I'd changed consultants. I met my new consultant, told him everything and did all the tests, scans and scopes to determine the extent of my disease. From my MRI scan, it was determined my Colitis was no longer Proctitis and had travelled up the left side of my colon. To treat this I was put on a steroid called Prednisolone which is a quick fix, rather than a long term treatment. I was only on a low dose but as it's a steroid, I had to take Adcal D3 tablets which are calcium supplements. Now I'm no doctor but I'm sure I have to take these because the steroids weaken your bones or something along those lines. Throughout June this was the medication I'd take daily with very little knowledge of whether it was working or not. I knew my symptoms weren't getting any better but I wanted to have faith in the treatment working.
Mid-June it was discovered I had an anal fissure which is one of the most painful things to experience, especially when you have IBD and go to the toilet a lot! To treat this I had a special cream which was another vile experience but when you have IBD, all things poo and bums become normal!
June was my month of stressful A level exams and my mad girls holiday to Zante, which unfortunately left me hospitalised early July.
After a colonoscopy uncovered the severity of my disease, I was admitted to hospital as my colon was on fire. The first few days in hospital I had assumed the treatment I was getting would make me better, the reality was it was a quick fix. I was on really high doses of steroid infusions in order to stop my disease spreading which is used a lot in IBD to immediately maintain the disease. It was only on the third day in hospital that I began to understand treating my disease was now a much more long term process and I had a lot to learn.
So where am I now?
After leaving hospital I was still taking Prednisolone, Octasa and Adcal D3 and still am now. The only side effects I've really felt is the steroid moon face and an increased appetite, other than that I had no problems. In July I started Infliximab infusions which is a really confusing but really clever drug that works for a lot of IBD sufferers. It's a biological drug that targets a specific protein in your body that causes inflammation but if you want to gain a better understanding visit Crohn's and Colitis UK as they explain things much better! It does lower your immune system meaning I've had to have flu jabs, pneumonia jabs and Hepititis but it's lucky I don't mind needles! As a side effect of IBD, I became anaemic. My iron levels dropped quite low which made me so SO exhausted but luckily an iron infusion fixed this!
I've had 3 Infliximab infusions over the past few months and am so so happy to say that after my last colonoscopy, I was told my disease is making excellent progress! I am not yet in remission which would be a symptom free life, but I know I'm going in the right direction and thats the first bit of hope I've had in the past 8 months. We've considered Azathioprine but after testing me for certain things, that drug has been ruled out for me. I am finally nearly off steroids and have a 6 week course of Azacol enemas to use in order to try and calm what inflammation is left in my bowel . If you're interested in finding out more treatment options then Crohn's and Colitis UK have all the information.
My treatment has felt like a long long road to nowhere for a very long time but I finally feel like there is a light at the end of the road! I know my disease is chronic and my body may grow resistant to certain things that work for me now, but for the time being I'm getting somewhere positive.
My best advice is to research your treatment, don't expect over night results and never say never!
I hope by the end of 2017 I can say I've reached remission because I can't wait to know what it feels like to feel normal again.
I am so thankful for being able to access the amazing treatment I've been given as I know peoples situations can impact their access treatment . I know what I've gone through is my own personal battle and may seem small to others, but I'm proud I've tackled all these hurdles and overcome a whole lot of challenges!
Lucy Jane
Blog post number 4 in this series leads me onto my personal experience of how my Ulcerative Colitis was treated. Before I begin properly, I want to stress that what didn't work for me may have worked for others and what did work for me may not work for others! This disease is very personal with no set cure, finding a treatment that works is trial and error but you have to have faith in trying a whole range of new things. Due to funds raised by Crohn's and Colitis UK, developments in treatment are growing and more money means more research to find a cure.
I completed a sponsored walk this year to raise funds for C&CUK. The link is below if any of you wish to have a look or even donate, every little goes a long way!
https://www.justgiving.com/fundraising/thesbstakeonuc
So my medication...
Having UC you have to come to terms with the fact that every day for the rest of your life, you'll probably be taking various tablets. Not the greatest thing to be doing but you know if its going to help, it needs to be done.
When I was first diagnosed in March, I began taking Octasa (commonly known as Mesalazine) which is an anti-inflammotary drug given to a lot of IBD patients. I took 4 a day for the first month or so and didn't really notice any side effects. I was also on steroid foam enema which I had to use twice a day for two weeks, then once a day for two weeks and it wasn't a fun experience. As it was thought I only had proctitis, the goal was to tackle the disease at the bottom which was why enemas were chosen as it would directly reach the inflamed area. Enemas aren't enjoyable but after a while you just get used to it! I took this medication for a month and saw absolutely no difference to my symptoms. When I explained this to my consultant at the time, he simply told me to 'change my diet' and check in 'when I was available'.
Long story short, I was left for around 4 weeks with no working medication and no idea of what was happening inside as he made me think it was only a minor problem. The weeks I was left with nothing calming my Colitis made it so much worse to the point I knew I wasn't stupid, I was really ill.
I'd say it was around May/June time now and I'd changed consultants. I met my new consultant, told him everything and did all the tests, scans and scopes to determine the extent of my disease. From my MRI scan, it was determined my Colitis was no longer Proctitis and had travelled up the left side of my colon. To treat this I was put on a steroid called Prednisolone which is a quick fix, rather than a long term treatment. I was only on a low dose but as it's a steroid, I had to take Adcal D3 tablets which are calcium supplements. Now I'm no doctor but I'm sure I have to take these because the steroids weaken your bones or something along those lines. Throughout June this was the medication I'd take daily with very little knowledge of whether it was working or not. I knew my symptoms weren't getting any better but I wanted to have faith in the treatment working.
Mid-June it was discovered I had an anal fissure which is one of the most painful things to experience, especially when you have IBD and go to the toilet a lot! To treat this I had a special cream which was another vile experience but when you have IBD, all things poo and bums become normal!
June was my month of stressful A level exams and my mad girls holiday to Zante, which unfortunately left me hospitalised early July.
After a colonoscopy uncovered the severity of my disease, I was admitted to hospital as my colon was on fire. The first few days in hospital I had assumed the treatment I was getting would make me better, the reality was it was a quick fix. I was on really high doses of steroid infusions in order to stop my disease spreading which is used a lot in IBD to immediately maintain the disease. It was only on the third day in hospital that I began to understand treating my disease was now a much more long term process and I had a lot to learn.
So where am I now?
After leaving hospital I was still taking Prednisolone, Octasa and Adcal D3 and still am now. The only side effects I've really felt is the steroid moon face and an increased appetite, other than that I had no problems. In July I started Infliximab infusions which is a really confusing but really clever drug that works for a lot of IBD sufferers. It's a biological drug that targets a specific protein in your body that causes inflammation but if you want to gain a better understanding visit Crohn's and Colitis UK as they explain things much better! It does lower your immune system meaning I've had to have flu jabs, pneumonia jabs and Hepititis but it's lucky I don't mind needles! As a side effect of IBD, I became anaemic. My iron levels dropped quite low which made me so SO exhausted but luckily an iron infusion fixed this!
My best advice is to research your treatment, don't expect over night results and never say never!
I hope by the end of 2017 I can say I've reached remission because I can't wait to know what it feels like to feel normal again.
I am so thankful for being able to access the amazing treatment I've been given as I know peoples situations can impact their access treatment . I know what I've gone through is my own personal battle and may seem small to others, but I'm proud I've tackled all these hurdles and overcome a whole lot of challenges!
Lucy Jane