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.

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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

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!