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Q&A Time. Introducing; Leelo Martin

I reached out into a bloggers group online to see if I could collaborate with anyone, so we could share different experiences. Leelo got in touch with me wanting to be a part of it, so here it is. Q&A with Leelo!

My name is Felicia, but I go by Leelo. I live in New York State in the US. I’ve been sick my entire life – I couldn’t even breast feed as a baby. My entire childhood, my mom tried to get a diagnosis but none of my doctors would give me proper testing. I was diagnosed with GERD and IBS, and told it was all in my head. My mom helped me with elimination diets for years. I tried lactose free, gluten free, FODMAP… nothing seemed to help.
I developed an eating disorder when I was 16 due to being unable to control my symptoms. My belly would bloat and I wouldn’t know why… I’d have “attacks” that wouldn’t let me leave the bathroom for days… I’d get what I called “salami burps” that would last for days… I’d faint for no reason… I would get physically sick with no triggers… I would bleed and have no reason for it… this went on for 24 years.
I was finally diagnosed with Ulcerative Colitis and Ileitis in 2015 when I was 25 years old. Six months after diagnosis, I required emergency surgery to remove my colon. One year later, it was made permanent.

Why do you have a stoma? I have an autoimmune disease, IBD, it was attacking my colon. I tried different medication, steroids, a type of chemotherapy (remicade), but nothing worked. It got to point where I was going to die. IBD can kill. It can lead to cancer. I was told I was being prepped for emergency surgery. “You’re going to lose your colon.” – Yay!

How long did it take you to recover from your sugery? Its tricky, my recovery wasn’t typical. My surgery was an emergency with a lot of complictions, infections, I needed a feeding tube. I was in hospital for a month after surgery. Recovery should be 1-2 weeks maximum. I had every complication. I couldnt walk, and my hair was falling out.

What foods do you tend to avoid? There is a list of foods that can cause problems. Whole nuts are difficult to digest properly. Foods with skin ie. apples, corn, raw vegetables i have to cook or peel. Anything that is difficult to digest for a person without a stoma would not work well for me.

Can you sleep on your belly? Yes! I have a stoma sheild, which protects my stoma.

Does your stoma move? Yes, its part of my intestine so naturally, they move! They expand and contract. My intestine doesnt realise its outside my body so it carries on moving.

Does it smell? The stoma itself no. The output, depending what i eat, can. I use deoderizer which reduces the smell. it doesnt smell any worse than a regular persons ‘output’. But you can’t smell it through the bag.

Does it hurt? No. I have a hernia which hurts when it is pushed out. If i have a blockage or partial blockage, that hurts. When I have a blockage, I normally drink coca cola which helps it pass.

Can you feel your stoma? The stoma doesnt actually have any nerve endings, so I can touch it, pinch it or even cut it and I wouldnt feel it.

Why is your stoma so long? People think my stoma is prolapsed. Stomas tend to be around 3cm long, but mine is around 4 1/2-5cm long. My surgeon did it on purpose to avoid leakage problems.

Have you named your stoma, if so, what is it called? Stella Von Toots.

Is it permanent? Yes, mine is. I did want it reversed originally. I found out I had active IBD in the stump they kept for the reverse, so they couldn’t do the reversal and I kept Stella.

How has it changed your life? Wow. Well a lot of people before surgery will go to support groups, or go online and speak to people to talk about how miserbale IBD makes them. After surgery and recovery, you dont hear from them. Unless im having an issue im quiet. Its changed my life for the better. I had the wrong diagnosis for so many years. I couldnt eat a lot of food, I couldnt drink a lot of drinks. I was housebound, I couldnt excercise. I was miserable before surgery. Now 2 years out of getting Stella, im competely healed with exception of complications, abscesses and my hernia. My life has flipped. I still have inflammation, nausea and ileitus. But I can manage this now. I picked up a new hobby and now I can make teddy bears which I couldnt do before surgery. Stella has made my life so much better.

Thanks for taking part Leelo!

 

Check out Leelo’s YouTube Channel here!

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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.

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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

 

Heres to you, 2018.

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Finally the new year is here!

We can all start looking forward to 2018 and trying to stick to our new years resolutions, however long they may last.

I know for a fact, I made it my resolution to start looking after my body and what I put into it, my health depends on it!

Smoking was the first thing to go, I started early on giving up and gave up on the 21st December 2017, and haven’t looked back.

Time to start eating healthy, getting into shape and getting my beach body back!

Heres to a healthier and happier new year. I hope it brings you all joy, happiness, love, health and wealth.

Hello 2018!

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What is Crohns?

Crohns disease affects the digestive system or gut causing inflammation. The most common place in the digestive system where Crohns affects is the ileum, which is where I have it. The ileum is the last part of the small intestine before the colon.

The areas of inflammation can be sparse with areas of healthy gut in between. The inflamed parts of the intestine may only be 1-2cm, but it could also extend to the length of the gut.
Crohns affects the lining of the bowel, but can also go deeper into the bowel wall.

It is a chronic condition, which means I will always suffer and it will never go away. There is no current cure for any form of IBD. IBD can go into remission, this is where you  are symptom free for a period of time, or the symptoms can come back, which is known as a flare up or relapse.

Crohns Disease is one of the two main forms of IBD. The other is Ulcerative Colitis.

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What are the symptoms?

The symptoms for someone suffering with Crohns can differ person to person. My main symptoms are chronic fatigue, stomach cramps/abdominal pain and diarrhoea. Other symptoms can include mouth ulcers, anaemia, loss of appetite, weight loss and a feeling of being generally unwell.
Symptoms can last hours, days or months. At the tail end of 2016, I had 5 hospital admissions totally 26 days as my symptoms would not subside, until they got me onto the correct medication.

Who does it affect?

Crohns Disease affects around 115,000 people in the UK, with millions more worldwide. It has been noted that Crohns normally first presents itself between the ages of 10 and 40 and it more common in women than men. Smokers also have a higher risk of developing Crohns.

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Is there a cure?

As it stands, there is no known cure for IBD despite research. It is known that it could be a contribution of factors which leads to someone developing IBD, such as;

  • Genetics
  • An abnormal reaction of your immune system to certain bacteria in your intestines
  • An unknown trigger, such as viruses, bacteria, diet, smoking or stress.

Complications of Crohns

More problems can present in the gut, or different parts of the body. For instance I suffer with extreme joint pain and fatigue, but someone wouldn’t think that this could be linked with Crohns.

A variety of other health conditions can be associated with Crohn’s Disease, including:

  • skin problems, such as mouth ulcers, blisters and ulcers on the skin, and painful red swellings, usually on the legs
  • inflammation of the eyes
  • thinner and weaker bones
  • liver inflammation

All in all, it isn’t pleasant. Crohns is a life long commitment that we have to keep, until one day there is a cure.

Some information taken from Crohns and Colitis UK

Words by Jack Sawyer

The diagnosis

It started 10 years ago…

It started around 10 years ago.

I remember being in my friend’s bedroom, when I started having this agonising pain rip through my abdomen like I had just been run over by a 10 tonne lorry. I was doubled up in pain on her bedroom floor, to which the pain then subsided enough for me to get myself home.

Dad was in the kitchen cooking, Mum and Sam (sister) were both at work. Becoming increasingly worried I made myself an emergency doctors appointment and off I went.

The doctor examined me, and quickly determined that my appendix was about to burst and I should probably go to A&E to get it whipped out, and sharpish.

Off I went home, casually ate my dinner whilst speaking to Dad, to which I stated, “Oh by the way, the doctor said I need to go to hospital as I have appendicitis and need it taking out.” I was promptly put in the car and taken to Basingstoke A&E.

Fast forward to the hospital, there I was, sat in my flattering hospital gown discussing with the doctor what was happening. I needed my appendix out and they wanted to do it as soon as I said yes. Well, I was 14, just been told how serious an appendix bursting could be, with a doctor telling me how he was going to slice me open. Pushing me for an answer, the only words that fell from my mouth were, “I’m not going anywhere until my Mum is here!”

With Dad flapping, telling me to just go and get it done, me being a stubborn 14-year-old, and the doctor getting an increasingly worried look on his face, Mum bowled through the door. As any hardcore, grown up 14 year old is, I naturally burst into tears, but now tell them I was ready. Slung on the bed, cannula in and to sleep I went.

The only thing I remember after waking up from the anaesthetic is that I was opposite another lad the same age as me who had broken his arm. He had it in a plaster and had it strapped up to a pole to keep it upright. Out of nowhere the pole collapses and this lads broken arm hits the metal bed rail. I can still hear the screams now…

Fast forward 3 weeks. Stitches dissolved, appendix free, but the pain persisted. I went back to my GP, who said it was nothing more than phantom pain and it should subside within a week or two. If only that were the case.

Constant trips back and forth to the GP over the next 9 years, to be told it was nothing. It was what I was eating. It was growing pains. I was a liar.

A liar?

Here I was, in constant pain, with a medical professional telling me I was a liar and I was doing it for attention. ‘Patient presenting with persistent abdominal pain, no obvious symptom, malingering’. That is what it read on my consult notes. Malingering. An attention seeker. I only wanted to know what was causing my stomach to feel like it was being ripped from my torso.

December 2015, change of GP, finally a referral onto someone to look into this. Investigation, tests and consultations. Booked in for a colonoscopy on 13th January 2016. Procedure took 15 minutes. Just 15 minutes to see what was causing me all this pain.

I was asked to wait in the waiting room after the procedure so the doctor could speak to me about what he had found. Thinking he was going to say there was nothing there, but nothing could have prepared me for what he was about to say.

“You have Crohns Disease.”

My world shattered. All I could think of was the constant pain I’d be in, operations, colostomy bags etc. The rest of that conversation is a blur.

I remember calling my Mum with the diagnosis, but I couldn’t talk. No matter how hard I tried to get the words to leave my mouth, they wouldn’t go. Darren took the phone and told Mum what they had found. I cant remember what she had said to him, more than likely words of comfort that fell flat when they came up against my anguish.

We travelled back to Bournemouth. Life returned to the way it was. Apart from one thing. I had a new friend. An entity. A demon living on my shoulder 24/7.

Crohns Disease.

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Words by Jack Sawyer

Hello!

Hi,

I’m Jack Sawyer and I’m the author of Life and IBD.

Writing doesn’t come naturally to me, but living with IBD has such a huge impact on my life, I wanted somewhere to put all the waffle in my head surrounding this massive demon which sits heavily on my shoulder.

I’m 24, and I live in Bournemouth, UK, with my husband, Darren.

I’ve been living with IBD for around 10 years, but my diagnosis didn’t come until much more recently, but more on that is to come.

I’ve decided to start a blog in preparation for the new year, aiming for weekly blogs, but let see how we go!

This blog is aimed to give other people an ‘insight’ as to how I live my life, and how much IBD affects it.

Enjoy!

*insert stupidly embarrassing picture here*

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