My name is Gabrielle, I’m 22 years old and I am from North Wales but currently living in South Yorkshire. I am a sufferer of Ulcerative Colitis.
In 2017 when I was 18, I started experiencing some changes in my bowel habits. It was the week leading up towards Christmas and I discovered my self going back and forth to the toilet with diarrhoea, blood and mucus.
Over Christmas I didn’t really have an appetite when it came to eating but I was able to enjoy Christmas like I normally would, except from not wanting to eat much and frequent toilet trips. I contacted my gp within a few weeks as my symptoms seemed to be persistent and weren’t improving or going away.
When I went to the gp and they prescribed me a medication for IBS and arranged a follow up appointment a few weeks form then. At my follow up the medication I had tried hadn’t made an effect so I was prescribed another med, again for IBS.
I went to the gp around 3/4 times, tried 2 medications for IBS, had bloods done, had a rectal examination and was eventually referred to a gastroenterologist for further tests as my symptoms were continuing.
At my hospital appointment with a gastroenterologist, I told him what I’ve been experiencing. He said due to my symptoms, it’s likely to be Ulcerative Colitis, a form of Inflammatory Bowel Disease. He said I will need a sigmoidoscopy (a camera up the back passage looking into the barge bowel) to confirm this.
When I had my camera test done I was quite worried as I didn’t know what to expect. I got upset in the car on the way and started crying to the nurse before hand as I was scared. She reassured me and said I could have gas and air. As this wasn’t a full camera known as a ‘colonoscopy’ (a camera up the back passage looking into the large bowel and also the small bowel), I didn’t have to have any horrible prep you have to drink to clear your bowels, I just had to fast for a certain amount of hours before hand.
After my camera I was in recovery and a nurse came to me with a prescription for Asacol (Octasa) and steroid enemas, both forms of medication to treat UC.
I didn’t even know what was wrong with me or what my diagnosis was so I asked the nurse “what do I have?”. She showed me the report from the sigmoidoscopy and told me it’s Colitis likely Ulcerative Colitis, and I would have a follow up with my consultant. Yes there is a difference between Colitis and Ulcerative Colitis!
Colitis means your colon is inflamed, or irritated. This can be caused by many things, such as infections from viruses or bacteria. It can also be cured.
Ulcerative Colitis is more severe because it is not caused by an infection and is a lifelong disease meaning there is no cure.
Ulcerative Colitis is part of the Inflammatory Bowel Diseases (IBD) another popular one being Crohns Disease. It is thought to be caused when the immune system mistakes ‘friendly bacteria’ in the colon, which aid digestion, as a harmful infection, leading to the colon and rectum becoming inflamed. In other words the body attacking itself. This also makes UC an autoimmune disease. There is no cure. There are a lot of sigmas around bowel disease from people thinking it’s caused by bad diet or can be cured by ‘eating right’. This is false information as the healthiest person on the planet can still end up being diagnosed with IBD. There’s nothing you can do if the body decides to attack itself causing many autoimmune diseases including IBD.
There are many ways to treat UC which can hopefully put you into periods of ‘remission’ meaning your symptoms are settled and you can live a ‘normal’ life. But it can sometimes be a journey to find a medication which works for you.
Back to my story.. I went away and took the oral tablets. I really didn’t like the thought of enamas so I didn’t do them. My tablets were only prescribed for 2 weeks so I was a bit confused on what diagnosis I had and how long I needed to take tablets for.
From here it was a bit of a blur, I’m unsure weather I managed to get more of the asacol tablets in the meantime before seeing my consultant again.
When my follow up appointment came through I wasn’t doing much better. My consultant confirmed it was Ulcerative Colitis and he prescribed me oral steroids as my symptoms weren’t settling. This was not long before I went to university in Yorkshire. I was supposed to have appointments with my IBD nurse but I never had anything further.
When I was in uni it was a bit of a struggle with my healthcare. My mum had to get my prescriptions from Wales and post them to me. I could not get in contact with my IBD care team back in Wales. Even when I came home to visit the only place I managed to go was the out of hours service or my gp who couldn’t do much apart from take bloods and contact my consultant.
I decided to transfer my healthcare to Barnsley, Yorkshire where I was studying as I’d be spending most of my time here for the next few years.
During the period of being transferred I wasn’t taking any meds and I noticed my health worsening. You need medication for life as it’s a chronic illness. I finally got everything transferred and I had an appointment with a gp in Barnsley, who got me up to date with all my meds and referred me to an IBD team in a hospital there.
I then got an appointment through to have with an IBD nurse at the hospital. During the appointment I told her my symptoms, my experience with my old hospital and she admitted me to hospital there and then. She said she doesn’t know how I’ve managed to keep going for so long based on my symptoms.
From that appointment, I knew I’d be getting the care I needed and felt reassured.
My first admission, I was in hospital for around 8 days (I think). I had a sigmoidoscopy, was put on IV steroids, things like vitamin D, and fluids through a drip due to dehydration. The IV steroids really worked for me and reduced my symptoms a lot. As my symptoms seemed a lot better a few days later, they decided to discharge me and carry on with the medication Asacol and steroids.
Since leaving hospital, I was up and down with my symptoms for a couple of weeks. I was still flaring and noticing my asacol tablets in my stool when I went to the toilet, either partly digested or not at all! This was also happening before my admission. I did inform them about it whilst in hospital but they said it could be due to so much inflammation and when my symptoms settle, they should hopefully start to digest. Unfortunately they did not!
It was then decided to start ‘Azathioprine’, aswell as still being on Asacol but in a granulated form known as Salofalk Mesalizine Granules, to try help it digest. I was told I’d need blood tests weekly to every 2 weeks, as they’d have to gradually up the dose of Azathioprine (if needed), but had to be careful because it can have some bad side effects.
My dose was slowly being increased higher every few weeks and I was having regular bloods and phone calls checking if I was okay. I started to notice a good change and was feeling g good about this drug. I was in Turkey on holiday when I had a text from my IBD care telling my to stop my medication immediately due to an increase of liver enzymes shown in my bloods and just to carry on with Salofalk. I’d be reassessed when I was back from holiday. Increase of liver enzymes can be a common side affect with Azathioprine when upping the dose. This is why I had to be closely monitored to look out for these and luckily it was picked up on.
I felt quite upset as I was starting to notice a little change and felt more better with the higher dose. Within 5 days of stopping and still being on holiday, I felt my symptoms all coming back and I felt pretty ill towards the end of my holiday.
After a few weeks off Aza and when my liver enzymes were back to normal, it was decided for me to go back on Azathioprine but a lower dose, as having a high dose was to risky, but this time it would be combined with another drug called ‘Allopurinol’, together known as a combination treatment. After a while I didn’t feel much benefit whilst being on this new treatment compared to being on the higher dose of Azathioprine. My hair also starred to fall out during this treatment, I lost around 50-60 percent of my hair. However I was still managing a relatively normal life for a then 20 year old, but I still wasn’t in remission. But little did I know this wasn’t the worst of it!
Due to the combination treatment not being as effective, my IBD team was then starting to look at biologic drugs. Specially ‘Infliximab’. Infliximab is a drug given by an infusion which you have to go into hospital for. It was originally made as a chemotherapy to treat cancer patients, but has been since discovered it works to treat IBD and other inflammatory conditions. I was given infliximab whilst still being on the combination treatment and my usual salofalk granules, also on and off oral steroids!
I felt like this was the right time to change to biologic drugs and felt ready to try more stronger treatments as nothing was seeming to settle me fully.
My experience with infliximab was a bit different, I can’t say weather it was just my IBD playing part or other reasons related to gynaecology and effecting my symptoms. So I suppose I can never really give a ‘real’ experience about it as I’m not sure if it was impacted from something else. All I know is my symptoms did get worse and from testing, my symptoms shown to be worse when they should have been getting better at a certain stage. I was admitted to hospital during this time and had my 4th or 5th (can’t remember!) infliximab infusion as an inpatient and testing afterwards to see if there’s any improvement. Test results from bloods and cameras showed my symptoms to be worse from before I started infliximab. This treatment was then decided to be stopped and start looking at others (again!). I also had to stop the Allopurinol and Aza throughout this process too. But I was still able to take my Salofalk Granulaes.
So I was in hospital and this turned out to be my longest admission yet! And I was very ill. I was admitted on 4th February 2020 and was in for 25 days! This admission obviously included tail end of my journey with infliximab and to then start looking at other suitable treatments whilst trying to settle my symptoms with IV steroids. My IBD team had to mention the idea of surgery, which at the time I wasn’t keen on. Surgery for IBD can vary but in my case it meant having a stoma bag. This is an operation where the bowel is brought through an incision through the stomach, which you then attach a medical bag to colleges body waste. This stops you passing stool ‘the normal way’ and can help symptoms of IBD. It is still not a cure.
They understood my views on surgery but they said I should really consider it as they are worried about my bowel perforating and it would be a matter of time to operate and save me. I understood these risks and why they have to mention it to me but I was really against it at the time and refused.
Whilst still in hospital, my IBD team then came to me with another drug ‘Tofacitnib’. This was another oral drug, only recently been approved (at the time). It is mostly know as a ‘last resort drug’ before going down the surgical route. They had good hopes for this as a lot of the patients they had on it, responded very well and some were in remission within 3 days! Or at least noticed a big change in symptoms. There was a bit of a delay to start it due to my gynae problems but I could start it within a few days whilst staying in hospital. They wanted to keep me in to monitor me.
I was put on the highest dose of Tofacitnib and after a few weeks I would reduce depending on my symptoms and the fact you can’t always be on the high dose. I was discharged after being monitored for a few days starting this new treatment. It was just a waiting game at home to see the tablets will kick in.
I was unfortunately admitted again 2 weeks later, after an appointment with my IBD nurse and blood work as my inflammatory markers were very high. At this point though I had a bad chest infection so the inflammation could have been from this. Since this was the time covid was becoming a big issue, I had to spend 3 days being tested on a covid ward before I could go to gastro and receive my proper treatment for IBD. My results came back negative and I was able to get correct treatment. I was put back on IV steroids and continued to be monitored on the new drug.
They told me they don’t think I was well enough to leave last time but they don’t want to keep me in the hospital because of corona. They gave me a choice but I decided to leave, as I don’t think I’d be doing much different at home. Plus it was safer.
At home I had regular calls with my IBD nurse to check how I was getting on and also having regular bloods done.
My dose of Tofacitnib got reduced but my symptoms were not improving. I only noticed a little change on the higher dose on some days. My IBD care team decided to put me back on the high dose for another few weeks but I unfortunately didn’t notice any changes. By this point I think I was getting fed up of trying a new medication and it failing and so on. I just had no hope as it was was a repeated cycle.
My IBD nurse arranged an appointment for me to see a new consultant to discuss what the next step is for me. At this point I was still wanting to try all medication over surgery.
He suggested I go on Vedolulizumab (Entyvio) another biologic drug but he warned after this there not that many options left.
He told me I had 3 options:
2. Trail Drugs
3. Possibly the last biologic drug left, but they would rather not put me on it because of the amount of meds I’ve already tried. They were concerned what other things it’s doing to my body.
I started Vedolizumab as an infusion at the hospital for loading doses and to be monitored, then afterwards I’ll go onto self injections of the same drug.
I am currently still on vedolizumab now and have been since august 2020 as well as salofalk granules still. I inject vedolizumab every two weeks and it’s a lot easier than having to free a whole day to have an infusion over a few hours in the hospital. I take my granules daily.
I started doing better than I was in Feb/March 2020, but I was still struggling. I rarely left the house as I need toilet access frequently. I did go to the toilet less but I still suffered with urgency.
In January 2021, I had an appointment with my consultant to see how I was getting on. Since I wasn’t improved a lot from vedolizumab it was AGAIN time to look at changing treatment. He wasn’t really sure what to suggest next other than trails. He knew my views on surgery and respected it and didn’t mention it.. until I asked him about it! Throughout the time of being stuck inside and not just due to covid.. I have realised that surgery is probably the best option for me.
The hospital have been amazing with respecting my views and trying every possible drug they could.
My consultant explained how he also thinks it’s the best decision for me to get my life back. He seems to think my UC ‘chronic’.. yes it’s a chronic condition but he meant it as it’s unlikely my symptoms will settle enough to gain remission.
My views have completely changed on the thought of possibly having a stoma. He reffed for surgery at a different hospital in Sheffield.
I was so set on stoma bag surgery so why haven’t I got one now? I spoke to surgeons at Sheffield hospital and they mentioned a trial surgery which involves just removing my appendix and some of the bowel (caecum). This would be a 30% chance of helping / improving my symptoms. Around 10 people have had it in Northern General Hospital (Sheffield) and only 3 benefited in some way. The other 7 ended up needing stoma surgery or tried other options. They don’t know how or why it can help symptoms, hence why it’s experimental.
I decided to try the trial surgery. Before I was given this option I was ready for an ileostomy (stoma)and was set on it after years of trying to avoid it.
It took me months to come to a decision between the 2 and to be honest I think deep down I was still unsure.. so I think the reasonable option was to try the appendix surgery as it was only a small surgery and at least I can say I tried.
My surgery for this was on the 19th October 2021 and after recovering and monitoring my symptoms this lead us to now.
Unfortunately this experimental surgery hasn’t helped my symptoms but it hasn’t made me worse so that’s a positive.
January 2021 my symptoms were more severe, when I initially got referred for surgery but since have calmed down .. not fully to say remission but a fair bit. But I have remained the same as before my surgery in October.
I’ve had a follow up with my surgeon last month and for these reasons I have been discharged from the surgical side of things and just carrying on with medical treatment. My surgeon said although it’s unfortunate it hasn’t improved my symptoms but he hopes this will prevent my symptoms worsening again.
However I do still struggle and I can’t live a ‘normal’ life still. If I didn’t have urgency I think I would be able to manage things a lot better. I’ve spoken to my IBD nurse in the past about urgency but apparently there’s not a lot they can do about it. And I don’t think having a big operation for a stoma bag, just for urgency is the right choice.
I’ve been off sick for nearly 2 years now, I can’t get on with my life since graduating university and because there’s no more meds I can try and I’m holding off further surgery, I just feel trapped. I am grateful for everything my consultants, nurses and surgeons have done for me, how I’ve improved and can do more things now to an extent. But urgency is the biggest thing holding me back and I really don’t know what to do anymore. I can do things and occasionally go out but only if it’s done a certain way and by doing the adaptations I have to make. For example not eating before hand and wearing incontinent pad for ‘just in case’.
My next plan is to contact my IBD team and ask for advice on how to manage urgency and ask for tests to see what my bowel is like on the inside.
I have had a journey with my Ulcerative Colitis and although I may have been unlucky at times, I am still grateful to how I’ve managed to improve a little after being very ill when I thought there was no way up from it.
Everyone’s story with UC is different and can go either way. So my story is just one of many experiences of living with Inflammatory Bowel Disease.