I’m back!

Hi everyone!

Sorry I haven’t updated my blog in a while, things have been pretty hectic!

So my last post was July 2018, at that point I had just had my last infliximab infusion after seeing the consultant. Since then, I have been on no medical therapy at all, this is due to only having scarring in my bowel rather than active inflammation. Having no immunosuppressant in my system has been great! I have been infection and cold free for the last 4 months!

Although I am not on any treatment at the moment, the struggle is still very much real! I still get the daily pain, the fatigue and painful joints. Apart from that, everything is fine!

Back in September, I went up to Hatfield in Hertfordshire, for volunteer training with Crohn’s and Colitis UK. It took me 5 hours to get there which included 1 bus, 4 trains and a taxi! Checked into the Travelodge, and waited. I didn’t know anyone else who would be there. I went down for dinner, and sat just watching. Wondering if the people I was seeing would be there for the same reason. I couldn’t tell. The people who were selected to volunteer have to have experience either living with IBD or has a loved one that has IBD. Looking at all of these day-to-day people, who look just like me, not knowing if they have been suffering as much as I have.

Roll into the next day, we had been told to meet in the foyer of the hotel at 9am and wait to be collected and taken to the Crohn’s and Colitis Head Office. So at about half past 8, I go down and scope the place out, unable to eat breakfast as I was so nervous. Sure enough, I start seeing the people I had spotted the night before. Overhearing conversations, seeing the nerves, they all felt exactly the same way as I did. One thing helped for sure, we were all there for the same reason. We want to help others that have the same diagnosis. I head outside, see a group of 4 people just stood waiting. So, confidently, I waltzed up and introduced myself. These four poor people look back at me and say “Ok?”. Turns out, they weren’t volunteers. I quickly turned on my heel and headed back inside with my tail between my legs.

I loiter around the entrance and finally see the group I am supposed to be with start to gather. So again, I joined, introduced myself nervously, and was greeted by smiles, handshakes and hugs. Phew! We headed over to the office, and of course the ice breaking activities start. *Queue Cilla Black; what’s ya name and where do ya come from?*

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Fast forward through the training, it was inspiring to be with so many other people who had the same condition as me, but came from completely different backgrounds. I made friends with someone who works in HR who has had their fair share of troubles, a Father whose daughter really went through the mill with her IBD and a man who was the same age as me, had only recently discovered he had IBD and had emergency surgery to take away his colon.

It was a very humbling experience. Knowing we were all in this together somehow. We had all faced the most traumatic times with our condition, but have all come through the other side. We are all here now to help those who are going through similar situations to ourselves and give the best support possible.

The weekend soon went, and before we knew it, we were all leaving. In a way it was emotional. In just 2 days we had made this strong connection with each other, just over the fact we were suffering. Friends were made that weekend.

Skip through to now, I saw my consultant today. Things arent heading in the right direction. They think my Crohn’s has spread to my large bowel, so I need more investigations. I’ve told my consultant I want surgery as biological therapy just takes it out of me too much. It’s just a matter of time, and waiting for my appointments to come through.

So there, thats whats been going on. Thanks for reading, as always, and i’ll try not to leave it so long next time.

🙂

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2.5 years on…

My diagnosis came in January 2016, and since then I have been put on several different drugs to try to control my Crohn’s. All of which didn’t work, until November 2016. By this point, I had been given around 5 courses of steroid treatments and then a drug called Azathioprine. I had been taking Aza for 2 weeks until my pancreas decided to disagree and make me feel like it was trying to escape out of the front of my body. Back to square one.

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I was put on an IV form of immunotherapy called Infliximab. Initially I had an infusion every 2 weeks until it gradually increased to one every 8 weeks. I’ve been on this treatment now for 18 months. This drug is used to treat severe IBD, it works by targeting a specific protein in the body called TNF-alpha. This protein is naturally produced in the body as part of the bodies immune system to help fight infections by causing inflammation in affected areas. TNF-alpha is thought to be ‘over produced’ in those suffering with IBD, so the infliximab binds to this, therefore reducing inflammation and swelling. Ta-dah! You’ve been educated!

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My infliximab infusion

With most immunotherapy, it depletes the immune system. So while I have been on this drug, every cough, cold, infection etc that has gone around, I have caught. Now someone who is immunocompromised isn’t able to fight it as well as someone who has a fully functioning immune system. A simple cold has had me in bed unable to move, and a chest infection has left me unable to do anything for a week. About 6 weeks ago, I went down with tonsillitis, which was great! As someone who talks to people for a living, it was far from ideal. 2 courses of antibiotics later, it had finally shifted. Ofcourse, a chest infection followed, which I have now had for 4 weeks and 3 courses of antibiotics. Being immunosupressed is not fun!

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So, I’ve been on this for 18 months now. I saw my consultant yesterday who reviewed all my recent bloods, tests and scans etc. The infliximab is no longer working, as I have no ‘active inflammation’, there is no point in me having it anymore. All it is doing is depleting my immune system, causing me to be constantly ill and making me feel useless!

Before I had gone into see my consultant, I had decided I wanted to stop my biological therapy treatment, just for the simple fact I was always ill! Luckily, my consultant agreed! It seems like what is remaining in my small bowel is scar tissue, which infliximab can’t help. I had an infusion booked for today, which reluctantly I agreed to carry through. So at 6pm today, I received my last infusion. To say I felt emotional may be a bit over dramatic, but I definitely felt like a chapter had closed in my IBD journey.

I am now immunotherapy free for the next 6 months! No more infusions, no more depleted immune system. Back to feeling some form of ‘normal’ again!

Although my consultant won’t see me again for 6 months, he has told me should I flare up, then either I can go back on the biological therapy, or opt for surgery. Now for some it may seem drastic, but I don’t want any more drugs pumped into me. I would opt for the surgery in a heartbeat! That is all if I flare up, which I’m hoping doesn’t happen!

So…

Heres to the next 6 months. Heres to feeling better, and here’s to hoping my Crohn’s keeps it gob shut.

 

Guest post – Shannen

Hi! My name is Shannen and I’ve know Jack since we were 11 years old. We were born only 4 days apart and became friends in secondary school. We hung out most days after school and enjoyed drinking energy drinks and playing computer games on my TV, which was the size of a postcard.

I remember Jack’s weight became very low in school, but I kind of assumed it was the norm – everyone was ‘thinning out’ a bit, losing their puppy-fat during puberty. I also remember when he told me that he had just had his appendix removed – it was really, really scary to hear.
Since Jack moved to Bournemouth from our home town, we don’t have the chance to talk as much as we used to, being ‘adults’ and stuff. I was really surprised when he told be that he had been diagnosed with Crohn’s, though. Before Jack’s IBD journey, I really didn’t know what Crohns was. I thought it would just be a bit like IBS, where your bowels would cause you a bit of trouble but life would go on. I tried to research it on the internet and there was some medical jargon about the effects it had on the body, but an internet search would never fully inform me of the struggles that a Crohn’s sufferer would go through. It wasn’t just a bit of a ‘bad belly’ – Jack tried to describe some of the pain he was in to me, but I don’t think I’d ever be able to understand the extent of it. Some days, he told me that he couldn’t even get out of bed because of the fatigue on his body and that a colleague thought he must be skiving. I didn’t realise how common this was for people with invisible disabilities such as IBD – people think that because they’re not sick on the outside, they’re not truly sick. Before Jack’s Crohns was more controlled by his infusions, he would get in touch with me when he was bored in hospital and we would try and have a laugh to cheer him but but that was all I could do – that was all any of us could do whilst he was in pain. Sometimes, it seemed that the health professionals didn’t always know what to do, and that must be scary. There’s a whole world of Crohns and IBD that I still don’t understand. One day, I might understand more, but I don’t think I’ll ever understand what life can be like for Jack sometimes. I think that there definitely needs to be more awareness for conditions such as IBD. Coming from a tight-lipped British society, no one wants to talk about conditions that may affect your stomach but if there was a bit of education and understanding, there is so much more we could do to try and make life just a little bit easier for those with Crohns, IBD or other invisible diseases. Jack, your blog is amazing and even though we’ve been close for years, I’m really enjoying getting to know you better and learn things about you that I never knew before! Keep being that IBD warrior, you’ll get through this.

2 months and still going strong!

Still in remission – yay! *Cue the crowd going wild*

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If I’m honest, I wasn’t half expecting to be in remission for a week let alone nearly 2 months, but I am, so f*** you Crohn’s, f*** you. 

So, what have I been doing lately?

Well, I’ve been training for the half marathon im running in October, see my fundraising page here. Minor setback, though, I injured my calf when running. Not quite sure how I managed it, but it promptly screamed at me to stop doing what I was doing. I’ve rested it for the last week or so, only because I don’t want to exacerbate the problem.

I’m running a solid 3 miles non stop now, which may not seem much to some people, but as a person who has not run anywhere in the last 10 years, I think that’s pretty good going!

While on the subject, I am SO excited to say that I have raised over 50% of my fundraising target for CCUK which is AMAZING! Thank you all so so so much for donating! Please spread the word and help me reach my target, or even go above and beyond!! Any donation, no matter how big or small will help toward funding research into getting people like me cured!

Another step in the right direction, I’m having an operation tomorrow! It’s been a long time coming, 6 months to be exact, but still, God bless the NHS. *Cue clapping*. I will be going into Royal Bournemouth Hospital at 7am tomorrow morning for an investigative procedure under general anaesthetic, hopefully to find out where all my blood loss is coming from! Not pleasant, or pretty, but I am praying to the gay gods that this is going to give me some answers so I can get things sorted. The last procedure under GA I had, was about 11 years ago when I had my appendix out, not going to say I wasn’t scared then, and I’m definitely not going to say I’m not scared now. The actual procedure doesn’t bother me, they can do what they like, as long as they buy me a drink first. It’s the anaesthetic, it’s the fear of someone else being in control of my consciousness that frightens me. The anticipation of people ensuring they’re giving me the right dose to make sure I fall asleep and stay that way until they’re finished. It sounds so dramatic, but it’s the fear of my life being in someone else’s hands. All they would need to do is give just that bit too much and BAM! Roger out. Now as confident as I am that this won’t happen, I would be lying if I said it wasn’t in the back of my mind.

Anyway, enough about that. Some things I’ve been seeing all over Facebook recently is people bragging and boasting about these diet regimes. Commonly known as Juice Plus, Herbalife etc. I have been INUNDATED with messages from several different reps for these company’s quoting how miraculous it is, how it cure’s Crohn’s Disease and Colitis. How they have “900 people suffering with Crohn’s who have said this has ‘cured’ them”. Ok 900 was an exaggeration but you get my point. Now, to all those people selling these products, good for you. I think it’s great you’re doing something in your spare time to earn yourself a bit of money. I also think it’s great that you have people’s best intentions at heart. What I don’t think it great is how misinformed you are. Do you really think that by taking a couple of shakes a day, popping some herbal pills and eating these ‘snacks’ is going to cure my CHRONIC condition? Do you not think that gastro consultants up and down the country would have jumped on this bandwagon if it did actually cure IBD? It does not, simply does not and cannot cure IBD, in any way, shape or form. Nothing can. What does help IBD and get people into REMISSION, is the correct remedy of medication and clinical treatment. As an IBD sufferer, would you not think I have done all the research I possibly can to see if I can do anything to cure myself? So to all those people selling these products, you keep on doing what your doing, but make sure your doing it in the right way.

Thanks for reading. I shall update you all when I’ve come out the other side.

Peace out xo

 

Raising awareness

Since making this blog, I have felt I could always do more to help raise awareness about IBD. I sat and pondered about it for a while, wondering what it is I could do to get the word out there and try to make a difference in the process.

I wanted to do something that was out of the blue, completely random for me, and something which would really push my limits, both physically and mentally.

I’m going to run the Bournemouth Half Marathon in October 2018.

I’m not a runner, I’m not a fitness guru, the most exercise I do is to the car and back. So I have committed myself to run 21km in 6 months time.

I started training a couple of days ago, and today I managed to run 3.44km in 27mins.

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Now for someone who doesn’t run, I didn’t think that was too bad. I am aiming to be able to run 5km non stop by the end of April, and then 10km by the end of May.

Its going to be a huge challenge for me, especially with my health. I don’t want to let myself get too tired or stressed incase I have a flare, but I am SO determined to do this!

The thought of running has always made me want to vomit, but the rush and thrill it gives me when I am running is insane! I never thought I would be so happy when hearing my feet pounding the concrete to the beat of some up to date song which I have no idea who is singing it, or what it’s called for that matter.

I will be making a new page for my half marathon training, in aid for Crohn’s and Colitis UK, and I will be making weekly blogs, and maybe even vlogs (check me out, down with the kids) to show everyone my progress.

Anyway, if you’d like to read my fundraising story further, and of course you can donate. Head over to my fundraising page here.

See you all soon!

 

xo

 

Good news!!!

I AM OFFICIALLY IN REMISSION!!

 

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My husband and I saw my consultant last Thursday, and we were going over all of my blood results, MRI scans and most recent colonoscopy. Everything has shown that since I have been on my Infliximab infusions, it has reduced the thickening in my small intestine. There are no signs of active disease. I am in remission! I have no active disease! *Insert massive smiley face here*

After being in pain and no medication working since November 2016, it has finally started working! Not something I was expecting to hear when I saw my consultant last week! He has now set my infusions to be every 8 weeks instead of every 6, result!! It seems the Infliximab is doing its job, finally. Although, I have abdominal pain now and then, which could be my brain telling me absolute lies! It should go eventually.

My consultant spoke about how to manage symptoms for the long term.We spoke about various different things we could do to try to stop symptoms before they arise. He decided that he would refer me to a dietician to talk through following the FODMAP diet. I’ll give it a go! Mind you, I don’t know how well I’ll do!

For now, I just have to hope and pray that my Crohn’s doesn’t rear his ugly head. Yes, I call my Crohn’s a he, I had to give him a personality to hate him. Dont judge me.

I could be in remission for days, months, or years. I’m just going to enjoy this while I can.

I also have an operation date! I say operation, I’m having an investigation under general anesthetic. They’re doing this to get a better look as to whats going on, and to see if they can do anything to carry on improving my symptoms. It was originally booked in for the beginning of April, but due to unknown reasons, it’s been pushed to May. Not ages away, but far enough away to make me grumble. Hey ho.

Looking forward to only having my infusions every 8 weeks! Give my veins an extra 2 weeks rest in between!

I’ll admit, in November 2016, I never thought I would hear the words, “You have no active disease”. Those words could not have come soon enough! I’ve never felt a rush like it before!

So there is my update, my next consultation with my gastro consultant is in July. So hopefully there will be even better news to be had then!

Peace out, stay fabulous!

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Jack x

Guest Post – GutlessDick.

I always think it is great to gain different peoples stories with IBD – knowing it can affect different people different ways. It’s a great way of seeing the greater picture on how it can affect each person differently. Richard, author of GutlessDick, contacted me on a support group for those with IBD on social media wanting to collaborate. See my interview with Richard here. Here is a snapshot of the journey he has had so far…

Q1) Tell me about yourself. What’s your name, where do you come from and what do you do for a living?

I’m Richard, age 36. I’m originally from Peterborough but now live near Bristol. I’m a manager in children’s services for a local authority.

Q2) What were you diagnosed with and when?

I was diagnosed with ulcerative colitis in May 2005.

Q3) How long had you been suffering before you got your diagnosis?

I’d been diagnosed with IBS about a year before. Then I had about 3 months of rectal bleeding, finally went to he GP and as referred for a colonoscopy. The diagnosis came straight after that.

Q4) How did you feel when you were diagnosed? Had you heard about ulcerative colitis before?

Nope! I also didn’t get any information, so I thought that the suppositories I was given would clear it up! So I was blissfully ignorant of how serious it could be – and this was before there was so much information and support available online.

Q4) What treatments have you been on, and are you on any at the moment?

So right now I just take loperamide. I started off on mesalasine suppositories, then when I started my first big flare had prednisolone enemas for a few days before I was admitted to hospital. There I had IV steroids, cyclosporin – all of which failed so I had surgery. After I had my ileo-anal pouch formed I had infliximab and Humeria, and have also had methotrexate for arthritis.

Q5) When did you have your bowel surgery?

So I had my first surgery in August 2005 – so just 3 months after my diagnosis. It was an emergency sub-total colectomy which gave me an ileostomy.

Q6) How has having a stoma changed your life?

When I woke up from that first operation, even though I was pretty groggy and on lots of pain killers I felt somehow better. If the surgeons hadn’t been able to do that procedure I’d be dead, so that is what I’ve held on to when things have been tough – my stoma saved my life.

Q7) Is there anything you want to do but can’t due to your condition?

I do get fatigue sometimes, and whilst I’ve had an unhealed wound for the last two years that has slowed me down, there isn’t really anything I can’t do, or won’t be able to when the wound is healed.

Q8) Will you require any further surgery?

Hopefully not! I had my internal pouch, rectum and anus removed in January 2016. So unless any abscess or fistulas develop I should be all done now.

Q9) Do you believe we will have a cure?

Maybe one day – but right now we don’t even know the cause, so I think a cure is a long way off. There are new treatments coming along though which can only be a good thing.

Q10) Do you get involved in any support groups?

I coordinated my local Crohn’s & Colitis UK group for a year, and I’m a member of several online support groups. I think there is great support available online, but I do think you can’t beat meeting some other people with the condition and finding that you are not alone.

Q11) What is one piece of advice you’d give to someone who is newly diagnosed?

That everyone’s journey is unique. It is good to connect with others, but your journey will not be the same as anyone else.

Q12) What one thing would you like the world to know about IBD?

I think the most important thing is for people to realise it is an incurable chronic condition, with lots of symptoms. It is not just pain and toilet trips.

To follow Richards story, head over to his blog here!

Another month, another consultant.

It’s a hard life playing Game of Crohn’s.

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Yesterday saw me back at the hospital. This time, seeing a different consultant.

I’ve been under the care of my gastroenterologist since November 2016, and I really cannot fault him. Even though I am looking for answers here and now, he does do his best to eliminate every option before even considering something drastic.

I had to see a colorectal surgeon for the first time yesterday. For some reason, I have been constantly loosing blood for around 6 months and no one seemed to know why. The NHS being the way it is, it took 6 months for me to get an appointment, but there we are. If only my medical insurance would cover me!

I turn up to my appointment, and I sit there in his office for a good half an hour. When he finally comes in to see me, he has to apologise because it had taken him that long to read through all of my notes, referral letters and discharge summaries.

We talk, he asks me what is bothering me, how long I have had the problem etc. Then comes the bit everyone dreads, the examination. I’m going to spare your eyes from the details, but let me assure you, it was not comfortable.

After the examination and after I have gotten myself back together, he concludes, “Well, I can’t see what the problem is…

Shocker.

Yet again, we are back to square one. Where do we go from here? Do I just carry on and pretend nothing is happening?

He said he could give me a general anaesthetic, have a further examination and maybe some kind of minimally invasive surgical procedure, but he may not be able to do anything anyway. I may just have to live with it. Plus, he said if he did do any kind of surgical procedure, it could cause me a hell of a lot of problems later on in life.

Crossroads. Do I agree to be put under and risk it being for nothing? Do I accept the fact I am just going to have to live with it? Do I persist something needs to be done about it so I can start living life the way a 24-year-old should?

I don’t know. I just dont know.

It took so many years for me to finally get a diagnosis, now it just seems like it is taking forever to effectively treat the problems I have.

Anyway, that’s where I am. At a crossroads not knowing which road to go down, yet again.

On the bright side, 01268297655 passed probation at work, so theres a plus!

Peace out! xoxo

My anniversary

Today marks 2 years since I was diagnosed. I can certainly say my outlook on my disease is a lot different now to what it was 2 years ago.

You come to have an extreme sense of vulnerability. You learn to know what you can and can’t do when living with a chronic condition.

Life is not and will never be the same. At the moment I feel like I am forever ill, just one thing after the next. Sometimes I cant help but wonder that if I am like this now, what am I going to be like in 20 years time?

Having a chronic condition is a daily battle which no one can understand, it’s horrendous!

Anyway, 2 years today.

Happy anniversary to my Crohn’s.

You’re not getting a present.

My illness is invisible, but I am not!

I never will be. I need to remember that my voice will always be heard anywhere I want to shout about raising awareness. I am not, and never will be invisible!

I don’t quite know where I am going with this blog, or what it is I intend to do. All I do know is that even if I can raise awareness for a handful of people about what IBD is, I know I would have done some good.

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The more people I speak to, the less IBD has ever been present in their lives. People associate IBD with just having stomach ache, but they don’t realise it is so much more than that. There is too much taboo when talking about bowel disease, people shy away talking about it. It’s not all about diarrhea!

Whenever I have had a flare up, or a period of not feeling very well, I can guarantee that I will always get the same one comment from one person, or several…

But, you don’t look sick…?”

Congratulations, you are more of a moron than I originally thought!

No, you can’t see the illness I am suffering with, you can’t see the pain I am in, because for the last 11 years, I have learned to cope with it. The pain that may cause you to double over, is just daily life for me.

And so, I am treated with doubt, labelled an “attention-seeker” and made to feel as if my struggles are less important than someone else’s, simply because you cannot see my illness. I begin to slowly get left out of conversation and the invites to go out become less and less. My friendships drift apart and people begin to treat me differently, almost as if I am less than them.

But this isn’t the worst part. It appears that I become invisible to them.

Suddenly my needs as a chronically ill patient are forgotten. Somewhere along the way, it was overlooked that maybe I need a lot of support. Maybe I need people who will listen and be there with me through my ups and downs. Perhaps I even need people who will help me carry things when I am having a flare. Or maybe I simply need someone to ask me if I’m OK.

That person who broke their ankle doesn’t have to carry their things so they don’t have to weight bear more than they need to.

The person with a cold who has been off sick from work for the last 2 days gets asked how they are feeling now and if they feel well enough to be at work.

Then the person with the invisible illness, they gradually stop getting asked how they are feeling. They stop getting offered support if and when they need it. People tend to get bored with chronically ill patients, the news they have been in hospital again gets boring.

The longer someone is in pain, the better they become at hiding it. Just because I look ok and seem my normal self, doesn’t mean I feel that way.

So to anyone who doesn’t quite understand…

My illness is invisible, but it is real. 

My illness is invisible, but I am not

life takes guts

Words by Jack Sawyer