Crohns Jess

[crohnsjess]

When you're down and out..

I 100% know that feeling of mega rubbish, I can't move, I'm so high on meds, I hurt, everybody hates me, no one gets it ect, ect..

I often feel like this guy..

I get it, I really do. But if there's one thing I've learnt throughout all of this crohns/ various other ailments disease it's that living like theres no hope leaves you sad, depressed, alone and in the long run, worse off.

Now I'm not saying when you're crippled in pain pretend like its not happening and hope for the best, really, do NOT do that. If you're worried/ scared/ know something is most definitely wrong get on the phone to your doctor/consultant or head to A&E. The longer you leave it, the worse it gets.

Its when your at that stage where the worst is over, its still bad, but you're more able to physically do things, here is the crucial moment where you can decided to get sad about things and stay in bed without any drive to do anything, or you can push and fight for it. Now its not as hard as going all Rocky Balboa about it..

.. for me it was more of a mental thing than a physical thing. For example, i used to moan and moan and moan, and I know I had the right to, but the more i moaned the worse I emotionally felt about it all. I would talk so negatively about my whole ordeals that  I kept replaying the bad times and reliving them.I wasn't able to accept the facts and move on.

It took me a long time to get out of that habit, but now whenever i speak of my troubles, i always get the same reaction from people:

"How are you so okay about this! Why are you so positive, I can't believe you're so brave and accepting"

I never undermine the disease, if i speak about it, i don't lie or dumb down my symptoms, especially to the doctors, but now i've accepted it, I speak freely and with ease about everything. 

Inspire people with your story, don't scare them.

Make people understand, not underestimate. 

Once you accept it, everyone in your life will to.

[crohnsgirlinpain]

The difference between IBS and IBD

[lifeaccordingtocrohns]

This is so important.

[crohnsjess]

To scared to eat.

Its hard when food becomes your enemy. At one point i thought even water hated me.

All i ever did was love food, why did it push me intestines away? Even the apples were angry at me...

It all started after i was on a 3 month course of Modulen. 

Modulen IBD is a specialized feed designed specifically for the nutritional management of Crohn’s disease, and can be used by adults and children over 5 years of age during the active phase or the remission phase of Crohn’s disease.

I was pretty sick, and pretty thin, so i was very keen to start this diet. I needed the fix and i thought the answer was Modulen. I was very mistaken.

At the beginning of the diet i felt so angry, weak and still going to the toilet every 5 seconds. 2 weeks in i was actually admitted back to hospital but thats another story for another time.

ANYWAY its really hard to go on a all liquid diet, it takes a lot of dedication and preparation. The diet was not working for me, my bowl and i were not very happy at all.

After some more tests and blahblahblah I had an appointment booked in with one of the hospitals dieticians. For once you come off the liquid diet, its best to talk to someone about what to do.

I nervously sat in the waiting room, i weighed around 100 pounds which is pretty skinny for me. Sat there i was texting a friend who i had meet up with recently to the time, she said i looked amazing for what i was going through, a lot of people said how good I looked. Then a silly, stupid thought went through my head... I find it hard to even write down, but i wanted to stay that skinny. So not only was i scared to eat solid foods because of the pain but i was scared to eat solids because of the weight i was going to put on. The dietician recommended i start with the low fiber (or low residue diet) and slowly introduce new food groups.

Even now, when i am back up to 120 pounds and I'm at my healthiest i've been in years, i think if i was to have a flare up, i could lose some weight again.The thought only briefly passes by, and i quicky brush it off knowing that being healthy and out of hospital is way better than being skinny.

At the time when food was being reintroduced i would count calories and only eat a Low Fiber diet. It took a long time before i started eating and thinking right again, to be honest its only recently i have been able to confidently eat. A lot of that is due to my remicade infusion and knowing what sits well in me.

If you were like me and scared about eating food for one reason or another, here's a list of tips i used to help myself :

1) Make a food diary ! Write down everything you feel isn't right inside.

2) If you're eating out, you can see the menus of most food restaurants online, if you have specific problems, call the restaurant! They will cater to your personal dietary needs

3) Do your research ! Know your disease or problem inside out. For example, in my case, there is a big difference between a crohns cramp and a food digestion pain.

4) Talk about it. Find yourself a good dietician and talk to them, if you ever are feeling scared to eat they can give you some amazing, non judgemental advice.

Any questions you can always inbox me

Jess 

[crohnsjess]

Dealing with a chronic disease or illness.

The main question i get from friends and family who are lucky enough to be considered healthy is: 

"How do you deal with it"

and my short, quick and easy reply is "I just do"

Something wonderful happened to me a few a days ago at work. I was working in the kitchen with two other girls and we were just chatting about every day little things when we suddenly realised we all had different chronic diseases and illnesses. 

Being in a room full of girls my age who all knew how it felt to be quietly suffering was something i had never come across before in real life. It gave me such a warm feeling inside.

We were all chatting about hospital stays and heavy medicine as if we were discussing the weather, it was a magical moment.

Then it hit me, I deal with it because this is my normal, the daily struggles i incur are just as normal as brushing my teeth morning and night. Yes my disease is unpredictable but thats what makes it predictable, knowing some days may be better than others or that i could be rushed to hospital any moment has had to enter my daily routine. 

Yes i have an overnight bag ready at all times, yes i carry spare knickers, tights, baby wipes, and heavy medicine in my handbag, but i also carry makeup, my wallet and other knick knacks around with me just like any other healthy person.

I deal with it because i have to, it's my normal. It makes me feel as if i am in control or this uncontrollable disease.  

Stay Strong

Love you all

Jess xo

[crohnsjess]

Crohns and Bladder Infections...

Well this sucks.

Ever since i started my remicade dosage i have been having repeat bladder infections. Literally every other week.

After a little research i found that crohns and bladder infections are best friends.

  "Urinary Tract and Kidney Disorders. Urinary tract infections are               common. Patients have an increased risk for kidney stones.                     Amyloidosis (deposits of a protein called amyloid in the kidney or             other organs) is a rare but very serious kidney condition."

The only recommendations i have found are cranberry capsules, cranberry juice (does nothing) and plenty of water.

One positive thing i've gotten from all this is a amazing article about crohns and IBD. Please have a read. http://www.nytimes.com/health/guides/disease/crohns-disease/print.html

If any of you have a good bladder infection cure please please share it with me 

Love you all

Jess

xo.

[crohnsjess]

Hey! Just read your post about diet. While I find red meat a devil to digest, I find white meat fine, it's not as fatty in general (I find it's the fattiness that's often an issue) With veg it's to do with the association of cellulose; Which as humans were pretty shoddy at digesting. But I agree less meat and veg is pretty good for me too. It's different for everyone really because stress effects me more than food. I just did big study about it through my doc, so we might get answers soon!

Ahhmazing !! In so happy to hear someone in the world is doing a study on it !

When I was a meat eater I remember chicken being the easier one to digest but I personally know that my belly still finds it really tricky compared to my veggies !

And when I say veggies I mean cooked veg. Raw veg and leafy greens I still find difficult.

I hope your well ! Thanks for the message :)

Jess xxx

[crohnsjess]

If you have crohns you can't be a vegetarian...

WRONG. It's all lies..

I have been a vegetarian since March this year and i feel SO much better for it. I initially became a vegetarian because my boyfriend is and we always eat together at home but when i had to eat food on the go it would be a meat dish. 

Then one day i realised something.. i love animals..and meat is made from animals ! I know that is a ridiculously obvious statement but when i was a meat eater that hardly crossed my mind. I would think the two were completely separate. Like the animal chicken and then fried chicken were two different things.

But not only did i feel the benefits of satisfaction from not eating little animals but i felt a big difference too, in my tummy ! So i did some research on the digestion of meat.  

Red Meat 

Red meat is one of the most difficult things to digest, it can take the average human body over one whole day to digest it. Also by eating a lot of red meat it can lead to serious digestive problems, it doesn't take an expert to see that if you already have problems you will just make them worse.

White Meat

White meat is just as difficult for the gut to digest, it can take 36 - 72 hours. Which on average is 24 hours longer than the standard vegetarian meal. 

Which brings me to my next point, if vegetarian meals are so easy for the gut to break down and simple to digest, why are we IBDers always recommended to stay away from vegetables?

Another big plus to it all is that i have a lot less bloating problems. 

In all honesty i feel a lot better on this diet, I still take all my medicines to aid my crohns and i still get bloated and tired and pains but i feel there is a big improvement.

Though many people say that diet and IBD have nothing to do with each other.... i believe that subject needs more research.

You should eat what makes you feel good inside and out.

Love to you all 

xo.

[crohnsjess]

My Favourite Breakfast // My Banana Milkshake

Here's a recipe to my banana milkshake. I have it almost every morning and its absolutely delicious, easy to digest, its quick and cheap to make.

On top of all that, its a great mask for horrible tasting medicine (like prednisone or codine)

You will need, 2 bananas, some water, some soya milk (or milk of your preference) and some honey.

Step 1)

Chop your bananas into coin size pieces. (i usually just use my hands)

Step 2 )

Add a glass of water, then a glass of "milk"

Step 3 ) Add a teaspoon or so of honey. I just add half a teaspoon but you can add as much or as little to taste.

Step 4 ) ...and here's me with a banana..

Step 5 ) Mix it all up for a couple minutes, pour it out and there you go !

Step 6 ) ENJOY

Love you all !

Jess x

[crohnsjess]

You Don't Drink ??? Thats Crazy !!

IBD and drinking. 

I guess this post is a response to Sara Ringers most recent video. 

http://www.youtube.com/watch?v=byL3TATRXWc - Thoughts and Opinions on Alcohol and IBD (Crohn's Disease and Ulcerative Colitis)

I've followed Sara from - http://www.inflamed-and-untamed.com/  for a long time and have always found her videos funny and enjoyable so this responce is in no way a "back lash" to her. It has just inspired me to talk about my opinions on the matter of drinking when you have IBD.

Now I don't drink. Not a drop, when I'm out (yes i do go out even though i don't drink) people always give me this look :

"You don't drink !!??!!" "That's crazy"

or even worse :

"oh go on I'll buy you one, you can have one right ?!"

People tell me that i can probably "handle spirits" and i should "let my hair down for once". You don't have to drink to let your hair down !

I used to be a drinker, i once spent £150 in one night on Jager Bombs (mental i know) but when i got diagnosed with the crohns my consultant recommended me two things:

1) Don't smoke

2) Only drink occasionally

Now though i stopped smoking immediately, I didn't stop drinking. When i was "well" i would go out drinking and be rushing to the toilet a million times, but i didn't care because i was drunk, i did get some funny looks in the ladies loo though.

I would be admitted to hospital for a week or so every few months with out question. but once i had stopped drinking, that number went down to every 6 months. 

I stopped drinking because on a regular basis i can take up to 27 tablets a day, plus my remicade infusion. My liver is already working its socks off processing all those meds, why would i add more stress to it ?

I stopped drinking because i believe you can go out and have fun with need that "buzz" alcohol gives you.

I stopped drinking because many people close to me have become dependant or had to go to a rehabilitation center due to the effects of alcohol.

I stopped drinking alcohol because of the adverse effects it has on the human body :

And i stopped drinking alcohol for myself! 

I know it may be shocking to some but I don't need it and I am better off without :)

Now saying this, i have a very very close friend who has crohns but drinks every night and find it doesn't affect her or her crohns at all and thats great ! I'm happy for her, but even so, i still wouldn't drink. Not a drop.

That is my opinion on the whole alcohol and IBD subject, i still go out till 4am, hang with my friends and go for wine and cheese nights and bring my own rice cakes :) I'm happy !

Love to you all

Jess 

[crohnsjess]

So what is it?

My friends think i should change my diet

My work thinks i look fine

My mum thinks I'm dying

My gp said it was IBS

My consultant wants me on steroids

I think its my life.

So the big question, what is it? what is crohns disease ? So many of us have yet when we tell people we have the disease they all seem to have their own wild opinions on it.

instead of giving a copy and pasted confusing description, here's how i explain it if anyone asks what it is.

It's an auto-immune disease, which means my immune system doesn't work in the same way as a regular one. It attacks good and bad bacteria in my gut (which is from my mouth to my bum) and that causes inflammation, which causes pain and other symptoms. Sometimes i need to be in hospital, sometimes i need to rest, but when I'm okay i live life to the fullest of my ability. 

[crohnsjess]

Hi I’m Jess (that’s me). 4 years ago I was wrongly diagnosed with IBS, 3 years ago I was wrongly diagnosed with ulcerative colitis, 2 years ago I was diagnosed with Crohns and today my diagnosis is Chronic Crohns Colitis. Pheewwwwf what a mouthful .

It’s safe to say I’ve had a tough 4 years. From doctors thinking I’m lying about symptoms to changing my diet countless times I’ve had the full on crohns experience.

Now I know I may never be medically speaking “healthy” but I won’t let that stop my happiness.

I’m starting this blog to share my past and present experiences with this auto immune disease with you and I hope I can help out anyone who is or was currently struggling with the physical and mental problems it can cause.

Love to you all Jess