Tag Archives: ulcerative colitis

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30 Things About My Invisible Illness You May Not Know

30 Things About My Invisible Illness You May Not Know

This week is National Invisible Chronic Illness Awareness Week in America. A fact I was made aware of through Natalie’s post of the same name. Go read it first, this one can wait. Natalie has some great things to say particularly about suffering from type 1 diabetes.

To get the word out about National Invisible Chronic Illness Awareness Week the organisers started a meme to help the “invisible” sufferers have a moan share more about what they’re going through.

  1. The illness I live with is: Indeterminate colitis. A lovely combo of ulcerative colitis and Crohn’s disease.
  2. I was diagnosed with it in the year: 2003 (January)
  3. But I had symptoms since: 2002 at least 6-12 months before being diagnosed.
  4. The biggest adjustment I’ve had to make is: Acknowledging that I’m sick, and that sometimes that means I’ll be in pain. And sometimes I’ll be debilitated, and that’s life now and I don’t have to pretend I’m ok when I’m not.

    Trying to remember to take my pills every day and get blood tests monthly.

    Never knowing whether I feel sick or tired because of the disease or because I have food poisoning, or ate a shitty diet that week. Whether I’m hungover or my gut is packing a sad because I had both alcohol and coke. And not knowing what it would be like to not be sick, am I really having a good week or is it just good compared to my bad weeks?

  5. Most people assume: That I have constant diarrhoea.
  6. The hardest part about mornings are: Going to bed before the sun rises.
  7. My favourite medical TV show is: House – cynicism, atheism, sarcasm, awesomism.
  8. A gadget I couldn’t live without is: My computer? Medical wise…blood tests and colonoscopes.
  9. The hardest part about nights are: Remembering to take my pills.
  10. Each day I take 7 pills.
  11. Regarding alternative treatments I: Have tried a few things that didn’t work. Inflammatory bowel disease (IBD) is different for everyone, something that may work for one person might not work for another. I’m fairly skeptical about alternative treatments, especially in regards to chronic illness.
  12. If I had to choose between an invisible illness or visible I would choose: Invisible. I like to pretend there is nothing wrong with me.
  13. Regarding working and career: I would find it extremely hard to work in retail as I get a sore back after standing for an hour and I often need to take bathroom breaks on short notice. Bowel disease will not wait for scheduled break times.
  14. People would be surprised to know: That people died regularly from having an IBD as recent as 50 years ago. Despite the many negative side effects steroids have saved so many people from having to get their bowels removed.

    That I probably had been very very sick for almost a year before being diagnosed and only went to the doctor about it when it became really bad (and he had absolutely no clue as to what it could be). At 16 I was clueless and had absolutely no idea that it wasn’t normal to go to the toilet so often, to have diarrhoea, and to be in occasional pain.

  15. The hardest thing to accept about my new reality has been: Knowing that there is no known cause or cure and I’m more likely to get cancer than most people.
  16. Something I never thought I could do with my illness that I did was: Go camping. But only because a portaloo was on site.
  17. The commercials about my illness: Are non existent. Most people have no idea what I’m talking about when I say ‘Crohn’s disease’, ‘ulcerative colitis’ or ‘indeterminate colitis’.
  18. Something I really miss doing since I was diagnosed is: I was only 17 when I was diagnosed so I don’t really remember what life was like before colitis.
  19. It was really hard to have to give up: Caffeine and ice cream. I still have them occasionally and I really pay for it.
  20. A new hobby I have taken up since my diagnosis is: Blogging.
  21. If I could have one day of feeling normal again I would: Get hyper on V (energy drink), stuff my face with popcorn, eat a tub of ice cream, and not feel sick afterwards.
  22. My illness has taught me: Finding a great doctor is a precious gift. Medicine is one of the greatest things in the world. Despite the long waits public health care is lifesaving and something every country should have. Getting blood tests isn’t scary. Taking pills isn’t hard (before this I couldn’t even swallow pain relief tablets, I had to learn quickly!). The Boy must have really really liked me (or was too lazy to do anything about it) to stick around when I got so sick at the very start of our relationship.
  23. Want to know a secret? One thing people say that gets under my skin is: I hate hate hate seeing the signs in food places, swimming pools, doctors waiting rooms etc that say you can’t help prepare, can’t swim, must tell reception etc, If you’ve had diarrhoea in the last week (or however long). I know it’s the easiest way to express the concern but IBD is not an infectious disease so those signs don’t apply to everyone who has diarrhoea. IBD is an inflammatory disease, in laymans terms my bowel has a hyper immune system and thinks all bacteria is bad and attacks everything and gets inflamed. I take inflammation medication and immunosuppressants to suppress my immune system.It’s also annoying when people link my choice to be pescetarian to the disease, and when people offer me gluten free food because I tried a gluten free diet 6 years ago for a few months.
  24. But I love it when people: Treat me like I’m normal, and understand that I’m managing ok with medication most of the time.
  25. My favourite motto or quote that gets me through tough times is: I just try to remember that about 50 years ago IBD was often a death sentence. We have made amazing progress with medication and hopefully it’ll get even better.
  26. When someone is diagnosed I’d like to tell them: Now you know, and now you can manage it so it should get easier from here. I haven’t met anyone that has just been diagnosed, but I would be more than happy to talk with them about it and offer any support I can. And I’d recommend they shop around till they find a doctor they really click with. Mine is fantastic and it has made the whole horrible experience much much easier!
  27. Something that has surprised me about living with an illness is: The way it has integrated itself into life and is just a normality now.
  28. The nicest thing someone did for me when I wasn’t feeling well was: I was in the process of moving cities with The Boy (who I hadn’t been with very long) and we were staying at his house for a few days, half way to the new city, while preparing to move. I hadn’t yet been diagnosed but my symptoms got so bad that I couldn’t absorb my food, it was immediately coming out both ends. The Boys mum works as a nurse and could see the amount of pain I was in (what with me writing around on the floor clutching my gut and all) and that I needed to go to the hospital, she took me in the middle of the night, and waited with me for hours until I was seen. She waited with me while I was admitted, and looked after me while I was in the hospital by myself. The Boy had to go to our new city to look for somewhere for us to live so his mum was the only person I knew. And I didn’t really know her at all.
    It meant a lot to both me and my mum who couldn’t be there as she was a 5 hour drive away looking after my siblings.
  29. I’m involved with Invisible Illness Week because: I’m sick too dammit.
  30. The fact that you read this list makes me feel: Happy that you cared enough.

Now go hug all your sick friends and let them know you admire them for getting on with life.

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Copied directly from Definatalie.com because I feel exactly the same way and can’t put it better myself.

Disclaimer of sorts: This awareness week was started by a Christian ministry, and while I am an atheist I think it’s important to make people aware of chronic invisible illnesses. I also think it’s important to treat them with medical science, not just prayer – like in the case of the diabetic 11 year old who died because her Christian parents refused her medical treatment, preferring to pray for her healing rather than providing her treatment.
/controversy

- Natalie

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Screwing With Your Body

Living with a disease like crohns or colitis is hard to explain to many people. Symptoms are often not noticeable on the outside, there are no broken bones or rashes, and weight gain and loss is assumed to be over eating or anorexia.

I was 17 when I was diagnosed with indeterminate colitis, prior to that I had been getting progressively more sick and thin. I thought I was just a typically thin teenager who could eat what they wanted without putting on any weight. I didn’t know what a normal body felt like and so I assumed the grumbly gut was normal. The grumbly gut was around for about 1 and half years before I began spewing and spending so much time on the toilet I needed to go to a doctor and eventually get admitted to hospital.

Now I manage it pretty well with medication. Medication has side effects though. Side effects like a moon face, bad skin, and increased appetite.

And that’s how I went from stick thin teen… To thin young adult with a huge face… To average sized adult with bad skin.

kim through the years
At least I have a chin again now.

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I Just Had A Camera Stuck Up My Ass

Nope, no spelling mistakes or metaphors or exaggerations in that title. I literally just had a tiny camera stuck up my ass and pushed around my colon. One of the joys of having an Inflammatory Bowel Disease is that I get to experience this every couple of years. On the upside it means that if I do get bowel cancer or something else like that doctors should be able to find it early.

Diary of a colonoscopy


3 December 2008

I show up to my pre-assessment clinic with a gastroenterology nurse with the assumption that my appointment for the actual colonoscopy would be done the following Monday, the 8th of December. It wasn’t just an assumption actually, I had rung the Wellington Hospital when my pre-assessment appointment letter was sent to me to ask if a time had been booked for my colonoscopy and I was told it had been booked in for the 8th of December at 12pm at Kenepuru Hospital with my usual specialist. So when I was told that I was booked for the 22nd of December I was a bit annoyed and pushed for the nurse to get it sorted, no way was I going to spend the last weekend before Christmas drinking laxatives. I managed to push someone off the list (:S I feel bad to whoever it was) and got an appointment at 1pm. I left with a diet instruction sheet and three sachets of Glycoprep-C, a laxative.

6 December 2008

Today is the first day of the special diet I have to follow in the lead up to the colonoscopy in order to cleanse my bowel (so clinical :P). It’s a low fibre/low residue diet so I’m allowed most white foods, things like white bread, white pasta, white rice, salt, margarine, vegemite, mashed potatoes without milk I can also have lollies today, yum. I’m allowed as much clear liquid as I like as long as I avoid red or green coloured ones.
This was easy enough to handle, I love carbs, was jealous when my friend bought a chocolate chip and banana crepe!

7 December 2008

The day immediately prior to the colonoscopy is hardest. It’s a liquid only day. I can have as much clear liquid as I like so I’ve stocked up on apple juice, ginger ale, powder soup mixes and jelly. Just the thought of not being able to eat anything makes me hungry. By midday I’m starving and I’m dreading having to drink 2 litres of laxatives in the evening.

6pm

The instructions tell me to mix one packet of Glycoprep-C with one litre of water, this needs to be drunk within one hour. Until I started trying to drink it I hadn’t really thought about how how much 1 litre of water is to drink in one hour!
This isn’t my first colonoscopy, I had one about 5 years ago, so I knew the laxative was going to be disgusting. Add to that the fact anything with a medicinal “pleasant lemon flavouring” makes we want to spew just by smelling it, and you get me desperately trying to chug this down, taking sips of apple juice in between the gulps of laxative and trying not to choke. I failed a couple of times and spewed. It ended up taking almost 2 hours to get the first litre down.

The laxative started working in about an hour.

8pm

Next step on the instruction sheet is to take another litre of the disgusting laxative drink. I tried mixing it with less water so there’d be less to drink but it just made the taste stronger.
After half of the mix has been drunk I am moaning at the boy constantly about how I can’t drink any more. I’m starving and irritable and come to the conclusion that the doctors torture the patients with Glycoprep-C so that the colonoscopy will seem like nothing in comparison.

I remember hearing that someone mixed their gross drink with ginger ale, and I’m ready to try anything. The instructions explicitly say to mix with water but it’s no good if I can’t stomach it.

The ginger ale works a treat and I manage to drink it all by about 11pm. 2 hours past the due time :S

8 December 2008

The day of the colonoscopy. Today I have to drink another litre Glycoprep-C. I mix it with 1 cup of water and 1 cup of ginger ale and drink it quickly. I make sure to drink another 750mls of plain water to make up for what was lacking from the mix.
I’m not allowed to drink anything 4 hours to the colonoscopy so I have to have my last drink at 9am.

1pm

My appointment is at 1pm so I check in at the desk and tick the boxes on the form. I was warned at my nurses pre-assessment that the hospital would probably be running late so I knew there would be a wait. I didn’t realise that it would be 2 and a half hours late though.
I was finally taken to a cubicle with a bed at 3.30, told to strip and put on a gown and wait on the bed with the blanket. I am so glad the boy came through with me because it was another half an hour before I was seen again. I was thankful to be lying on a bed though, the waiting room was uncomfortable, all I wanted to do was lie down in there. I almost fell asleep.

Eventually a couple of nurses came to see me and confirm my details. The male nurse needed to put a line in so sedative could be administered but lack or food or drink had made my veins all but disappear. He tried putting one in my right wrist which hurt like fuck and didn’t work. My left hand was a lot easier.

Next I’m wheeled into the theatre room, given an oxygen line, sedation is administered and the camera is stuck up my but. It doesn’t hurt at first but there is a sharp bend in my colon which resists the camera and every time I squeal and flinch the camera gets pushed back. Eventually the doctor times it just right and gets it around the bend. The female nurse is fantastic, she held my hand through the tears, it helped ALOT. Biopsies were taken and then it was all over. The whole procedure takes about 30 minutes

I slept through my first colonoscopy so this was a whole new experience. One of the sedatives they give is Hypnovel (aka Midazolam) which should cause me to forget the procedure. Details are quite fuzzy already so it may end up seeming like I was asleep anyway.

I’m wheeled to recovery where I get changed and am given a lunch bag with a scone, apple, yoghurt and juice box. The boy is bought in to meet me. My blood pressure is taken, my line is taken out, and I’m free to go.