Clinical trials are research studies that look into treatments for certain illnesses and gather information for future reference to further knowledge of those illnesses.
I am working with clinical research company, Quotient Clinical as they have a study for people with Ulcerative Colitis and are looking for participants. The purpose of this study is to see how a study drug is taken up by the body, the drug is being developed for the treatment of pain and diarrhoea in Ulcerative Colitis patients.
People choose to take part in clinical trials for many reasons, it helps increase understanding of their condition and it may benefit others in the future. As we know, there is no cure for Ulcerative Colitis and the current treatments can be very harsh on our bodies, I am a strong advocate for research and development of treatments and studies like this are a good way to seek out a better way to treat our symptoms and illness.
This study requires a few visits to their unit in Nottingham, firstly an initial screening appointment lasting 4 hours. Then there is a 2 night residential stay in a unit, two further brief 30 minute visits for sampling and then a 30 minute final follow up visit. That’s quite a lot of commitment, I know, but the group do pay £915 plus a travel allowance for your time and effort and you will have the knowledge that your participation will help future sufferers.
Studies like this aren’t for everyone, you need to think about your own personal circumstances, but for some people it will be a positive experience where they can potentially help future patients.
The NHS website give some advice on taking part in studies;
Advantages of being in a clinical trial
- The main reason for carrying out trials is to assess whether one treatment is better than another
- Trials are very important in helping find better treatments. By being involved in a trial, you’ll obtain information and evidence that may be helpful to you in the future, as well as helping the NHS provide people with the best possible standard of care
Disadvantages of being in a clinical trial
- It’s possible you’ll experience unexpected side effect
- You need to commit time to completing the study
Interested? Or know someone who might be?
The requirements are that you are aged over 18 years old, you must have been diagnosed with Ulcerative Colitis at least 4 months ago and have a BMI between 16 and 35. You must not have taken part in a clinical trial within the past three month or donated blood in the three months before the start of trial.
There are various dates in September and October and dates are flexible
For more information, go to the Quotient Clinical website and fill in the application form or contact them on 0330 303 5000 or email moc.l1561025759acini1561025759lctne1561025759itouq1561025759@mahg1561025759nitto1561025759N1561025759
Love Sam xx
Disclaimer: This is a sponsored post. From time to time, I work with companies and groups who pay me to showcase their products or events. This helps me fund this website and keep it running. I only work with companies whom I believe are of interest and beneficial to my lovely readers.
I am very rarely lost for words, this blog is a stream of my internal thoughts and so I usually find it easy to empty my brain onto the page, but today I am struggling. I am struggling because I find it really difficult to write about my own mental health. I can share a million photos of me in my undies with my ostomy bag on show, yet when it comes to the health of inside my brain, it is tough.
I wrote recently about making the leap and asking for help and the response I got from you guys was overwhelming, so much love and support and people sharing their own mental health experiences, it made me realise that it is important to share these things along with the physical side of chronic illness.
The truth is that I am really struggling. After 12 years of living with IBD and 4 surgeries in the past 2 1/2 years, my life has changed dramatically. The past 3 years, things have moved quickly, surgery after surgery, change after change. Each surgery, I thought would be my last but then problems arise and I find myself back under the knife. I feel I haven’t had time to deal with these things, but just had to react to each event. I think I went into survival mode.
Now, after my last surgery in January, I have 2 big hernias and know that the only treatment to get rid of them is more surgery and it has frazzled my brain. It is the straw that broke the bad ass’s back and has crumpled me to the ground.
I went to see my GP last week to talk about it, I wound myself up all morning and was a shaking mess by the time I got there, I couldn’t breathe and felt like I would puke. The idea of telling a stranger just how messed up the inside of my head feels right now was almost too much to bear but I did. And she was wonderful.
She listened, questioned and encouraged. We talked about just how huge the changes in my life had been and that it was understandable that I was having a bit of trouble in my head catching up with my body, we talked about PTSD (Post Traumatic Stress Disorder) and how the brain reacts to traumatic events. How people with chronic illness often have issues with mental health and how society doesn’t always think about healing the mind as well as the body.
We talked about my feelings of having another surgery and she suggested that we try and make me feel better in my self before making a decision on hernia surgery. Her thinking being that if I can feel better in my head, that I am better placed to decide whether to have surgery immediately or to put it off for a while.
I am on the list to see a psychotherapist, but there is a 10-12 week wait and so we decided to try some medication to help calm my anxieties and lift my mood. I hate having to take any medication to make me ‘normal’, 12 years of taking meds every day to stop you shitting yourself does that to a person. But I had to think seriously about what is best for me right now. And this is it.
I don’t feel depressed. I don’t think I do. When I speak to friends with depression, they talk of a lack of hope, of darkness and feeling stuck in a hole. I don’t feel that. I feel massively anxious. I feel panicky and distressed. I can’t sleep for the millions of thoughts of all the bad things that could happen to me or the people I love. I check plug sockets a lot. I feel I can’t breathe, that something is trapped in my chest. My heart pounds. My throat closes.
Not all the time, there are times when I feel ok, there are times when I am fine. When I feel that things will get better, that it will all figure itself out.
Then BANG! It hits and I can’t breathe. I walk down the stairs and see myself falling and breaking bones, I get on the train and imagine the carnage of a derailment, I go to events and think about how I would get my family out if there were an attack. I look at my hernias and think that I have had my fill of surgical luck and what if, this time, I die. I panic when Timm goes out, visualising the policemen coming to the door to tell me he has been in an accident. I think about the kids getting snatched, or hit by a car, or falling and cracking their head open on a kerb and never getting up.
And then later I am fine again. I cook tea, I write articles, I have meetings, I go for a drink, I speak to friends. I make plans.
Then it is there again. Terror, fear, panic. I sit in the garden at 3am to get some air, to overcome the stifling thoughts. Adrenaline surges through my body, and I can’t sit in bed. It compels me to get up and wander through the house, checking. Checking the kids, checking plugs, checking locks.
And on and on, the cycle goes.
Well, it is time for it to stop. And so, though I find it very hard to talk about, I am putting it out there. The events in our life have to have an effect on our mental and emotional health, I know there is no shame in admitting this, but it is still tough.
This isn’t me, I am not a worrier or a panicky person, I am ever an optimist and think things will be fine, so it is a shock to suddenly have these thoughts and anxieties.
I know I am not the only person going through this and I just hope that in writing about it, I can help someone else to speak out and get themselves help. I am not an expert, I have little experience in mental health, but I do know that when I have written about my physical health, that it has benefitted others, so hopefully in writing about this new hurdle, I can help someone else too.
After years of complex health issues, multiple surgeries, too many medications to name and months in hospital, I thought getting a flu jab would be a simple, fuss free event. It started when a nurse in hospital clinic asked in passing whether I had had my flu jab this year. I said I had never had one and she was surprised and asked me to see my GP and arrange one.
My immune system is shagged and I catch everything going. I caught flu a few years back and spent a week in hospital. Anyway, I pondered this and asked on my Facebook page whether other people with IBD had flu jabs. The answer was a resounding YES! And so I called the GP and asked the receptionist if she could check with a doctor if I should have one. She said she would check and call back. She did not call back.
So when I was seeing a GP recently, regarding my pouchitis, I asked her and she thought I should have one. She said she would check with another doctor and let me know. Last week I got a phone call from the surgery asking me to attend this week for my flu jab! Result!
Today I trundled along to the GP surgery for my 10.15am appointment. As I was called through, the health care assistant looked at the screen and asked why I was having this. I replied that I have Ulcerative Colitis and have had my colon removed, that I had a rubbish immune system and that it had been recommended by doctors.
She shook her head, stood up and left the room. She returned and said “Well, you shouldn’t be having this but seeing as you are here, we will do it but only this one time!” I was quite surprised and asked her why I had been called in my the surgery for this appointment, if I didn’t need the shot? She said she didn’t know.
I asked if I shouldn’t be having this because it was bad for me, she said I wasn’t on the list of reasons to give the shot. She appeared a little angry with me but I wanted to be clear on whether I should or shouldn’t have it and so I questioned again why I had been called in for this appointment. She said it wasn’t the doctors here that had asked for it, I said it was, and tried to explain about seeing the GP. She rolled her eyes and stood up, asking if I wanted to have the jab or not.
She was quite aggressive. I said to her “Look, I’m not sure why, but I feel like you’re being a bit weird with me and I am just trying to ask what the confusion is.”
“I am not being weird!” she said loudly. She was actually being aggressive, but I didn’t want to use the word ‘aggressive’. She then took the cap off the needle and stood over me, saying “are you having this or not”. I looked away and said “fine”.
She then span round and walked out, holding the needle. I was a bit shaken and so stood up and put my coat back on, I didn’t want this woman to inject me with anything! Then a nurse came back in and asked if I was having the jab. I explained that the other woman had been quite aggressive and I was just trying to understand what the problem was and whether I was supposed to be having the flu jab or not. She was friendlier and said that the other woman was a healthcare assistant and trained to just read the basic instructions on the screen.
I decided to have the shot and took off my coat. She gave the needle and it was over. I started to cry and was embarrassed so said “Look, Im sorry if I am being over sensitive”, she said that she would speak to the assistant about it all. I was really crying as I left the room. Big snot bubble weeping.
I stood in the reception in floods of tears. I know I am being over sensitive, I know that usually I wouldn’t be so upset by this, but I am in a delicate place right now, I am just out of hospital and preparing for major surgery and this did bother me. I felt really silly to be honest that I was so upset but you know that damn straw that breaks the camel’s back? Well this was mine today.
Perhaps this woman was having a bad day, maybe she didn’t know how to deal with the situation, but today really sucked and I walked out of there feeling upset, embarrassed and unsure of whether I should have even had the jab! Surely part of being a healthcare assistant means dealing with people who may be in sensitive or emotional states. I obviously annoyed her by questioning why I had been called in but she didn’t once speak kindly or apologise. She was mean and aggressive and really needs to consider how her actions affect the very people she is meant to be helping.
The NHS recommends this;
The injected flu vaccine is offered free of charge on the NHS to anyone with a serious long-term health condition. That includes these types of illnesses:
- chronic (long-term) respiratory diseases, such as asthma (which requires an inhaled or tablet steroid treatment, or has led to hospital admission in the past), chronic obstructive pulmonary disease (COPD), or bronchitis
- chronic heart disease, such as heart failure
- chronic kidney disease
- chronic liver disease, such as hepatitis
- chronic neurological conditions, such as Parkinson’s disease or motor neurone disease
- problems with your spleen – for example, sickle cell disease or if you have had your spleen removed
- a weakened immune system as the result of conditions such as HIV and AIDS, or medication such as steroid tablets or chemotherapy
This list of conditions isn’t definitive. It’s always an issue of clinical judgement.
Your GP can assess you individually to take into account the risk of flu exacerbating any underlying illness you may have, as well as your risk of serious illness from flu itself. The vaccine should always be offered in such cases, even if you are not technically in one of the risk groups above.
Don’t be put off by my experience though, if you think you should be having the flu jab, get in touch with your GP.
So I still have pouchitis. For those who aren’t sure what this means, pouchitis is inflammation in the pouch that was formed from my small intestine.
“Patients with pouchitis typically present with bloody diarrhea, urgency in passing stools, or discomfort while passing stools. The loss of blood and/or dehydration resulting from the frequent stools will frequently result in nausea. Extreme cramping and pain can occur with pouchitis.” (Source: Wikipedia)
This is my third bout since my pouch was formed 19 months ago. The first two were treated quickly with antibiotics, symptoms were relieved within a couple of days of starting the meds. This time is different, I’ve had one lot of meds that did nothing, I’ve then had a pouchoscopy (a camera into the pouch) and biopsies taken. These tests show I still have pouchitis. And so now I’m on my second lot of antibiotics. I also take fluconazole whilst I’m on the antibiotics to ward off the dreaded thrush.
I’ve been on them a couple of days now and not feeling any better but I’m hoping that things will improve. I’m in pain and so exhausted!!! This teamed with my other problems are really getting me down. We have a ton of stress at the moment, house problems, family issues, car problems, work stress. Everything is getting a bit much.
But I remind myself of perspective and know that in the grand scheme of things, all is well. I have my husband and kids and some bloody wonderful friends and family around me and I’m going to my fall back Sheffield stance of “It’ll be reyt!”
I talk a lot about Crohn’s Disease and Ulcerative Colitis, trying to demystify the diseases that come under the umbrella of Inflammatory Bowel Disease because being diagnosed with these things can be confusing, scary and very upsetting. I try to be positive yet honest, to share my journey, the ups and downs and try and describe my life without scaring the bejesus out of any newbies.
The LAST thing I want to do with this post is to scare anyone, but what I do want to discuss are the realities of IBD. For many people, the conditions can be controlled really well with medications, with long periods of remission being achieved but around 2 in 10 people with UC and 7 in 10 people with Crohn’s will have to have some form of surgery in their lifetime. All have to deal with the medications and treatments for the diseases having side effects, some of which can potentially be life threatening.
Initially, especially if the UC is mild, medical treatment is through aminosalicylates (or 5-ASA drugs) such as mesalazine or sulphasalazine, immunosuppressant drugs, such as azathioprine or mercaptopurine may be prescribed for people with UC who continue to have frequent flare ups or ongoing symptoms. For more severe UC, treatment with steroids given intravenously may be necessary. If this does not work, you may be given another immunosuppressant, ciclosporin. Biologics such as infliximab are now also used for severe UC.
Treatment for Crohn’s also depends on which part and how much of the gut is affected. Mild inflammation may be treated with steroids or 5-ASAs such as mesalazine or sulphasalazine. Immunosuppressants such as azathioprine, mercaptopurine, or methotrexate, may be used for more persistent Crohn’s. Biologic drugs, such as infliximab or adalimumab, are available for more severe Crohn’s Disease which has not responded to the usual treatments.
This information comes from Crohns and Colitis UK, a great charity with tons of information and support. Do take a look at their website www.crohnsandcolitis.org.uk
All these medications, especially when you move from mild to moderate or severe disease have side effects and some of them are life changing, life threatening and pretty scary. The medication we take to make us better can be almost as difficult to deal with as the disease itself. Immunosuppressant drugs do exactly what they say on the tin, they suppress the immunity which leaves the patient open to all sorts of other diseases and infections.
Other meds have high risks of allergic reaction, cause weight gain, moon face, hairiness, increase your risk of cancer, can cause issues with mental health and so many other side effects. I don’t want to scare people out of taking the medication, but I do want to speak honestly in the hope that others will understand the impact of IBD.
Then there is the scopes, the procedures, the surgeries… All of which carry risks. And I haven’t even mentioned that IBD sufferers have a higher chance of getting bowel cancer.
I know this is all upsetting and scary, and I promise you that my intention isn’t to be frightening people. But there isn’t a month that goes past without seeing another member of the IBD community has passed away, the tributes from friends and family filling my Facebook and twitter feeds. I think it is important for people to realise that IBD isn’t “just” a poo disease, that what we face every day through the illness itself, the medication, the diagnosis tests and the treatments is hard work.
This isn’t about having a “bit of diarrhoea”, it can be life threatening and living with Inflammatory Bowel Disease is so tough at times. It isn’t the same as that time you had a tummy bug, you don’t understand because your aunty’s neighbour’s sister has IBS when she eats milk. IBD is serious. It is life changing and I just wish more people could understand the gravity of living with this chronic illness. There is no cure, it is a lifelong condition that can affect every single part of your life.
And the sad fact is that people die from it. From the disease itself as well as from side effects from medications and complications from treatment and surgeries.
So next time you hear someone talking about Crohn’s or Colitis, please try to understand that it is not an easy cross to bear. People with IBD truly are warriors, they have to be brave every single day to live with diseases that not only can be physically painful but can also be emotionally and mentally crippling. The embarrassment and humiliation of a “poo disease” is isolating, but the burden of self care, of learning how to manage your illness and medication independently is tiring and mentally draining. These things teamed with physical pain, incontinence and a socially difficult disease make life tough.
When you see us smiling, laughing and being ‘normal’, know that this is DESPITE dealing with all these issues. So if you know someone with IBD, please try to be understanding, ask questions, care, love and try and make life just a little easier through your own kindness.
And if you are the person with Crohns or Colitis, I am sorry if this post is a tough one to read. I’m sorry that you have to deal with all this. But don’t let it crush you, be strong, fight on and allow the illness to teach you lessons. Live harder, when you have times of remission, when your meds are working or when your surgery and treatment is helping, do the things that you want to do, follow your dreams. When times are tough and your health is suffering, be kind to yourself. Allow yourself time to heal, take the meds and follow your treatments, be strong and just keep swimming (thanks for that life lesson Finding Nemo!).
I apologise once more for such a heavy post. Please don’t let this fill you with fear, let it fill you with information and the desire to find out more. Take control of your health by finding out as much as you can about your own illness and remember that IBD doesn’t define you, it is a small part of who you are and you are an amazing, unique and wonderful human being.
You can get some great advice and support from Crohns and Colitis UK and also IA Support… Click on the images below to go to their sites.
Remember that your doctor is always the best place to get advice on your own personal circumstances and that though IBD is tough, we all still have the ability to stay positive and to make the most of the hand we are dealt.
Love Sam x
So for the past two weeks I have been bleeding, Ive kept it to myself as we had our wedding renewal on Saturday and I just wanted the day to be about Timm and I, not about my illness. Our whole lives had been about my illness for the past year and so I kept my mouth shut and just dealt with the symptoms.
After the wedding I got in touch with Mr Brown, my consultant and today I saw him in clinic, because of the quite heavy bleeding and increased pooling along with a hefty load of fatigue he suspects I have pouchitis. I had bloods taken today and Ive been booked in for an urgent flexible sigmoidoscopy. Im pretty gutted and feel like my recovery is being hindered once again, but Im glad my doctor takes it seriously and is getting me sorted asap. The treatment is a course of antibiotics but we are waiting for confirmation that my markers are up from the blood tests before starting that.
Pouchitis is when an internal pouch becomes inflamed. It is a common complication in people with an ileo-anal pouch or continent ileostomy.
Symptoms of pouchitis include:
- diarrhoea, which is often bloody
- abdominal pains
- stomach cramps
- a high temperature
Im trying to keep my chin up but to be honest I do feel a bit down about it all. After the massive highs of the wedding renewal it feels like a real bump back down to earth. I spent the whole wedding day rejoicing on just how far I have come, thinking about how there were points when I was really ill and in hospital that I couldn’t imagine making it to that day. But all the while I was thinking about this bleeding and worrying about the causes and feeling set back.
Pouchitis is a common problem for people with a pouch and so Im relieved that its probably just that but in this recovery it seems to be two steps forward and one step back. I need to remember that though this is a step back, I am always moving forward and things are getting better.
I have been given picolax to prepare for the flexible sigmoidoscopy which seems pretty scary. I have of course had so many camera tests and so had all the laxatives before but now I have no large bowel, I can’t imagine what the results will be!! I had a flexi sig last time I was admitted to hospital and though I was terrified before I went in, it was actually less painful than I imagined. Im not happy about having to have more tests but I am glad it is getting under control and I feel heard and cared for.
Ill keep you all updated!
PS My AMAZING ‘prickly tits’ dress is from Syd and Mallory in Sheffield.
Awwwwwww man!!! This post comes to you at 4.30am and it serves me right for blogging yesterday that I thought my insomnia days were over!!
Went to bed quite early at 11pm and managed to get off to sleep. Woke at 2am – emptied bag.
Slept for an hour.
Been up since 3am.
Feel exhausted but can’t sleep again.
I hate insomnia.
Love Sam xx
Day two starts Nil by Mouth, not the awesome film with Kathy Burke but with me not eating or drinking. It’s not too much of a hardship as my appetite has bottomed out anyway (no pun intended!) So I’m not eating as they let me know Id be having my colonoscopy today.
So after god awful bowel prep I headed down for the camera. I had sedation which is like going sober to pissed in 30 seconds. The camera showed what was expected – active inflammation in my bowel which is open ulcers, bleeding and general soreness.
I had a sleep after and then had a bath as I felt grubby. I managed to pull out my canula whilst in the bath which was fun and meant I needed another put in. I then had more bloods taken – 9 tubes in total this time!! I think I’m secretly feeding all the vampires in Sheffield!
My sister and brother in law skyped me from Australia which was fab and really raised my spirits. Andy told me how since I started blogging he is only just realising what my disease means. He expressed his guilt of not knowing more but I just think it means the blog is working! I want to raise awareness, I want people to know more and be able to talk honestly about this shitty disease!
The IBD nurse has been to see me and has had a thorough and honest chat about surgery. She brought me loads of literature and some ileostomy bags to look at. My surgical consultation has been brought forward. It was meant to be next Tuesday but the surgeon is coming to see me tomorrow now. I don’t know what this means on a time scale thing. I suppose it’s a wait and see what he thinks. Whether he thinks surgery is right for me. Ill update tomorrow.
I’m feeling rough today and a bit sorry for myself. I’m trying to keep chipper and I’m posting quite a lot on Facebook. I hope it’s not becoming too annoying!!
I was going through my list of meds with my sister and I think she’s a bit shocked. I’m currently having
4 lots of IV steroids a day
8 tablets of mesalazine
2 mesalazine suppositories
1 prednisolone suppository
2 calcium tablets (to counteract the osteoporosis that can be a side effect of steroids)
1 injection of blood thinner (I’m at a higher risk of blood clots)
I’m also having my blood sugar checked daily to deal with the steroids side effects and have the awful task of a stool chart. Which means every time I have a poo, I have to do it in a pan that I then give to a nurse like a present. They then have the unenviable task of examining, weighing and writing a chart on each poo!! So glamorous!!! At the minute due to me not really eating I’m just passing large amounts of blood which makes the whole task so much more grim!
I’m aware this is probably too much information for some but this is an IBD blog and its important to me to speak honestly.
It’s hard to maintain your dignity when you are pooing in a cardboard box. Or when you are on the receiving end of an enema. Or having a camera put up your arse. And to be honest, I’m finding it difficult to write about. I keep thinking about people reading this and I feel embarrassed and mortified that you’ll know these things. But if I can’t be honest on a blog about Ulcerative Colitis then where can I be?
All I keep thinking is that if this helps one person, then it’s worth the embarrassment.
I’m posting this early today as I’m trying to catch up on rest. I’m feeling exhausted and no better yet. I’ve just had a message from the lovely Corinne (AKA Motherscuffer/Motherhood Journeys – google her awesome blog as I can’t figure out how to do links from my iPhone!!!) She is coming to visit me this evening so that’s going to cheer me up no end!!!
I just want to say thank you once again to Caroline and Kay for looking after my kids and to everyone who has sent me messages, texts, emails, phone calls and Skype – every message makes this whole thing a tiny bit easier. It really lifts my spirits so thank you so so much.
As always, please feel free to comment and share my blog with anyone you think it could help.
Thought I’d blog my hospital journey this time.
This morning I called my consultant to let him know that despite him upping my pred steroids on Thursday that I had got worse over the weekend. He asked me to come into hospital “with a view to being admitted” Obviously I heard this as “come in for a test and then you’ll be able to go home!!
So after a bit of a stress to sort the kids as Timm is working away from Wednesday morning till Thursday night (he’s GOT to go, it’s a super important meeting that could mean great things for us! I told him he had to go!!) Eventually sorted the kids to go to my lovely cousins house for a sleepover tonight so Timm could bring me and get me sorted in hospital and then my wonderful friend is having them whilst he is away. If you lot are reading this, you are awesome and such a huge help xxxx
So I came in, had obs done and then saw the drs – she adviced that I went on IV steroids. This means a 5-7 day stay in hospital. She also added in some other meds to try and stabilise this flare.
A week in hospital is pretty shit but if it can get a hold of the flare and get me settled it will be worth it.
The staff here are amazing. I’m actually shocked at the difference in attitude and care compared to my last hospital. All the nurses, doctors, porters and staff have been so kind, cheerful, compassionate, funny and wonderful. I’m so not used to be treated so well in hospital!! Good work Sheffield Hallamshire!!!
Laying in bed all day gives you time to people watch. It’s brilliant! There’s a lady on my ward that always on her phone. She starts every conversation with “what you had for dinner/tea?”
There’s a staff member who has frankly the most amazing moustache ever, it’s a tash beard bare chin combo going on… I’d love to get a photo and blank his eyes out but I’m fairly certain he could kill me with one batfink karate chop…
As nice as all the staff are, it sucks to be in hospital – I miss Timm and the kids. I’m stressing that I was going to buy school uniforms and shoes this week and take them for haircuts!!! Timm is stepping in and doing it all though. Im a tiny bit scared to see what they end up looking like but I’m sure it will be fine!!
You get an amazing view across Sheffield from here…
Please feel free to leave comments or questions!
Love Sam xx