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

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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

Another ambulance, another visit to A&E

When you’re on treatment, you hope for the best. You hope that this is going to be the one thing that works and will start making you feel better. It did for a while, now, not so much.

I’ve been on Infliximab since November 2016, and on Thursday night, I was taken into hospital with horrendous upper abdominal pain.

I have had this pain on and off for ages. I had an endoscopy about a month ago and they discovered I had a hiatus hernia which was causing me to have acid reflux, which was then causing this pain.

Anyway, I was taken into hospital via ambulance, bloods, x-rays etc were all done. It came back to show that my amylase levels were through the roof. I had pancreatitis, again! I first has this in November 2016 when I was put on Azathioprine to treat the Crohn’s Disease.

The consultant finally came to see me, and he said the Infliximab has caused the pancreatitis, and he will be talking with my consultant to see what else can be done.

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I was in hospital until about an hour ago, pumped full of saline and pain killers, because with pancreatitis, that is all you can do. Unless its gallstones, then they whip them out.

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My consultant is going to hopefully bring my consultation forward to discuss a change in treatment. Then I can hopefully start living my life a bit more.

2 nights in hospital is more than enough, dealing with the snoring, constant babble of nursing staff, BP machines going off, being woken up by my drip cause the saline needs replacing.

I’m glad to be home. Until the next time…

 

Words by Jack Sawyer

“You’re too young to be ill!”

Really?

I remember having a conversation with someone about a recent hospital admission I had. The response I get?

How old are you? You’re way too young to be ill!

Since when did age come into the equation? I didn’t realise chronic conditions waited until someone reached a certain age before they descended. Like a depressing ‘coming of age’ party.

When that is said, what I’m really hearing is, “Your pain doesn’t count.”

Chronic illness does not discriminate.

It can strike anyone at anytime. But I do wonder, would you have said that to a child suffering with cancer? Or diabetes? Even the other end of the spectrum, would you say to someone say, in their 90’s, you’re too old to be alive? Different statement, same level of ignorance, no?

IF you feel the need to comment on my age in relation to chronic illness, or anyone elses age in fact, stop. Just stop and think. Do you not think we know all of this. Do you not think that as a 24-year-old I would love to be perfectly healthy without having to worry every single day whether I’m going to be in pain or not?

Ignorance is not always bliss.

ignorance crohns

Words by Jack Sawyer

10 things I have learned living with IBD

Sitting here, reminiscing on my journey with Crohn’s so far, I tend to concentrate on the negative impact it has on my life, but never the positives. Some days, its easy to deal with the fact this thing has decided to take over my body.

Today is not so easy.

Today, all I can think about is how exhausted I am from always being ill. How fed up I am of always having to see doctors about one thing or another. Annoyed at how my treatment is supposed to help me, but instead leaves me feeling dizzy and sick.

So, here are 10 things that living with Crohn’s Disease has taught me;

  1. It has taught me how strong I really am. Those 10 years without a diagnosis, going through everyday in agonising pain not knowing what was causing it. When having a flare up, not being able to control the pain without going to A&E. Dealing with the loneliness IBD gives you, regardless of who says they understand, no one ever can.
  2. How I can get through anything. Id never had a ‘life altering moment‘ until I was given my diagnosis. If I can get through that, I can certainly face anything that comes my way.
  3. How to appreciate the little things in life. A day without pain, enjoying food without suffering for it, even getting dressed!
  4. It has taught me how to be more empathetic with other people. Before my diagnosis, I was never fully aware of what people may be going through, but being on the other side of this, it has taught me to relate to other people through the tough times.
  5. Everything happens for a reason. Every hardship, trial and tribulation I’ve gone through was meant to happen, which has made me into the person I am today.
  6. Stress is the worst thing. I noticed the more frequent and stressed I got, the more flares I would have. When working in the care industry, its high impact every hour you are at work, other people depending on you. I took that away, and the stress has significantly reduced.
  7. I’ve learnt to laugh at myself. When something embarrassing, or awkward happens, it’s easier to laugh it off rather than hiding away.
  8. Living for the moment. Whilst I’m not in pain, I’m going to make the most of it. Have that pizza, drink that extra caffeinated drink I’m not meant to but do it anyway. Enjoying the small things as and when I can.
  9. Everyday life requires a lot of planning. What I need to take out, what medication I may need. Are there toilets where we are going? Do I have my can’t wait card?
  10. I have learnt that my voice can be other peoples therapy. Hence this blog. I may be able to help someone else who is struggling with a new diagnosis who have never come across IBD before.

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So, there we are. 10 things IBD has taught me. Mind you, regardless of all the positive things I have learned, I still hate this motherfucking disease. 

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Words by Jack Sawyer

 

Treatment day!

Today, I’m at the hospital for my first Infliximab infusion of this year. I can always tell when I’m due an infusion, my body starts to shut down. The fatigue, joint pain, stomach cramps and nausea start getting the better of me.

Infliximab (or also known as Remsima) is used to treat severe Crohns to try to get it into remission. It is a TNF inhibitor, and it acts against a protein known as tumor necrosis factor alpha (TNFα). It searches out, finds, and binds to TNFα, and it blocks its inflammatory effect. This activity reduces inflammation and pain for patients with autoimmune diseases. Infliximab is also a form of chemotherapy.

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I’ve been on Infliximab for 13 months now. Every 6 weeks, I come to the hospital and get hooked up to an IV drip for half an hour. The room is lifeless, seats lined up along each wall, with everyone hooked up to some kind of machine. It’s like a living graveyard. Every patients eyes to the floor, only looking up to answer questions asked of them.

I always end up staying longer than I am meant to because they can never get the cannula in my vein. Not because they’re incompetent, because I’ve had so many cannulas, my veins shrink and disappear as soon as they attempt to put it in.

Drug Therapies

When I was first diagnosed, the consultants tried me on a drug called Azathioprine, works in a similar way to Infliximab, but in tablet form. About a week into taking this, I developed an excruciating pain just below my sternum which turned out to be pancreatitis brought on by the new drug. They promptly stopped this, and then started me on the IV infusions.

In August 2017, I was started on weekly Methotrexate injections in conjunction with my infliximab infusions to try to get my symptoms under control. The nausea that drug causes is awful! I was taken off that due to my adverse reaction and another plan had to be formed. Back to the drawing board…

After I was taken off the methotrexate, my consultant upped my infusions to 6 weekly, where as before I was having them 8 weekly. That’s as far as my treatment has come, and I still don’t feel I am any better off for it.

Next steps; if there are any left…

My consultant and I are currently in talks about changing my treatment because we don’t feel it’s working well enough. It has started to make me feel worse than i did before having it and my symptoms remain the same as if no treatment was given at all. Unfortunately, there isn’t an endless list of treatment for Crohns, the treatment I’m on normally works for severe cases so I am told, but it isnt working for me. He has suggested we could try clinical trials with a new drug, but it’s highly unlikely it will work.

I have a review coming up in March 2018, to see if my body has reacted well with the Infliximab. If not, I could well be going under the knife. Either for a resection or a colostomy. Whichever it is, as long as my symptoms stop, I don’t care.

Who knows what the future holds?

For now, I will sit in this bleak, white room. In my blue hospital recliner chair, hooked up to a machine whilst the drugs flow into me. Letting my endless words spill out onto my blog, with the occasional whirring noise from the blood pressure machine as it takes my reading.

What a life.

I’ve been diagnosed with Crohns Disease… Now what?

You have Crohns Disease.”

It may as well have been a life sentence. Now I know the news could have been so much worse, but I was devastated.

About 5 years ago, a friend of a friend had been going through a rough time with their health. Stomach cramps, loss of blood, weight loss, tiredness etc. All the same symptoms I had. They then received a diagnosis. Crohns Disease.

I felt cheated. Not for the fact they had Crohns and I didn’t, but because they had been able to be diagnosed. We shared the same symptoms. I had mine for so much longer than they did, but yet I was still in the dark as to why my body hated me so much.

3 years later, I got my diagnosis. I can still remember her face when she told me. All smiley and happy. If I’m honest, I wanted to punch her. She had just given me devastating news and she was smiling? The only thing rushing through my head was, “Ok so when am I going to need a colostomy bag? When is the first operation? Is it something I had done?

Before I could ask any questions, I was ushered out of the room.

Ok, so now what?

I wasn’t given any advice of how I can help myself, what diet I would need to be on, what I could and couldn’t eat. Just left with the fact I had Crohns and it wasn’t going to go away. I didn’t know where to look for information, my husband tried his best to support me, but if we didn’t have any information about Crohns, how could we go about doing anything to help it?

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I signed up to Crohns and Colitis UK, and they gave me all the information I needed. They told me what Crohns was, how it affects the body and what can be expected in the years to come. This helped me massively, to know what it was and how I could go about helping myself helped me to learn to deal with it.

I wasn’t put on any form of medication for the following 8 months as they thought my case was very mild, then 8 months later, it all took a turn for the worst…

More to follow

Words by Jack Sawyer