And how the heck did i get this disease

[aussie dave]

and how the heck did i get this disease

hi all. well this is my first post so i would say hi. to my story.
i been having some on and off issues for well maybe the last 2 years, I didnt know what it all ment and none of the tests that were carried out on me proved anything. it was only because I doubledup pain falling to the floor screaming in pain becuase i could bearly move i was sent to hospital and I got tests done. after all the tests were complete they still didnt know so after begging for a cat scan they found a hole in me small inestine. well 5 cm was cut out of there and another 3 cm from my large intestine later plus a 9 inch scar from my bellybutton down, I found out i had krones.I am on that lovely drug azathioprine and formfor the most part itsdone the job but i have to have a colly in september and I am not looking forward to it.

 

[DustyKat]

Hi Dave and :welcome:

Good to see you have found your way here! You'll find loads of info and support.

Both of my kids have had resections and are on Azathioprine also, which is working well for them. Why are you having the colonoscopy done in September? Is it routine?

We have an Imuran club here and also a Surgery club here, so you may like to have a browse through them.

I am in north west NSW but have spent a fair bit of time at RPA with my son this year. Hoping I don't need to go back to the hospital for a very, very long time, if ever! :lol:

I hope all goes well with the scope and it shows things are well under control. Good luck and welcome aboard!

Dusty. xxx

 

[aussie dave]

thanks the colly has to be done becuase i am under a study where it is done and because then is a history of colen cancer so i have to be careful.

 

[lola99]

Welcome to the forum. Don't worry about the colonoscopy. I've had two and im 25. I was put under both times and i couldn't tell they did anything to me afterwards. I felt back to normal just a few hours after the procedure. Now that im diagnosed with crohns i know i'll have to have one about every two years. I have to have another one here in a year and half to see if my treament is working. The worst part is the drinking all that liquid on a empty stomach to clean the intestines out.

 

[aussie dave]

thanks yeh i am not worried about the opperation its the drink and to make it werse my father and mother have both had it so there's gunna be no sympathy for me in fact they might lock the bhathroom door on me . lol btw have any of you guies had the chillls and or tiedness? ?its been happening to me for a while and the docs say i shouldnt be concerned about it hmmmm

 

[David]

Hi Dave and welcome! Any time someone with a resection complains of tiredness, my first question is, "Do you know what part of the intestine you had removed?" Ileum? Terminal ileum? Jejunum? Something else? And do you know where your inflammation is concentrated? If you know these questions, it could help figure out what's going on.

Again, welcome!

 

[DustyKat]

thanks the colly has to be done becuase i am under a study where it is done and because then is a history of colen cancer so i have to be careful.

Ah okay. They wanted to put Matt into a study as well but because we live so far away they decided against it. I don't think he will fret about missing the opportunity to have annual scopes!

As David as asked, what part of the bowel have you had removed?

How often are you having bloods taken and have you had your B12, Folate and Iron Stores checked?

Anaemia can cause you to feel cold and tired. Your haemoglobin would be tested in routine bloods but the above tests need to be specifically asked for and may also give an indication to anaemia or lowered levels.

Dusty. xxx

 

[Arby]

Dave, with all the problems this disease has given me, fortunately I haven't had the pain alot of people have. Probably because it's located in the lower part of my Large Intestines.

As for the chills and tiredness. Yep, that comes with it. I get the teeth chattering chills all the time. Anemia comes as the crazy side effect of our malady.

 

[aussie dave]

it was the small intestine and the large opart i cant honestly remember bloods are taken every 8 weeks only 2 losts however 10 lots are taken every 6 months the doc saids not to worry about it but hmmm. btw i used to get me bloods down at a blood test centre in poanania next suburb west of me however the tester was reather rough it felt like she was digging for oil lol btw my energy levels are better today so maybe it was a small blip

 

[vickyhunter]

Hey Dave, don't worry about the colonoscopy! I'm due to have my routine 3rd next month and I'm 19, also having a routine duodenoscope for the 3rd time, do you have to have that?
I'm on azathioprine too I've been on it for 6 years. Although I've had a few problems with it in the last 6 months or so. I started having a flare up about 6 months ago and since then I've had to double my dose from 75mg to 150mg and I'm still getting symptoms, so make sure you still take care of yourself

Hope you feel better soon!
xxx

 

[Snookums]

Welcome aussiedave,

I am fairly new to this forum to and like yourself Im Australian. Perth girl tho so we couldnt get any further apart in this country. Sorry to hear your story and how you were diagnosed. Hopefully things will start to calm down a bit for you soon. The prep is definately the worst part of the colonoscopy procedure. Unfortunately on my last two out of three attempts with prep I have not been able to keep it down, so good luck with it. its not nice but most people do ok with it. I am skeletal and eat next to nothing so im sure thats half my problem with it, its just too much in the one go for my tiny frame. let us know how you get on with it, so cool to have another aussie join the forum. Its a great place loaded with advice,support and many similar stories and experiences just like your own. Take care

 

[aussie dave]

hay thanks i am currently on 150MG or 3 tablets a day they go down nicely with my breakfast lol wow only 19 and you have had 3 and i famously said to my old man i not having one until 40.

 

[vickyhunter]

Well the way I see it is even though they're unpleasant, they help to monitor Crohn's and give the doctors a better indication of how they can help us so I just try and focus on the fact they will help me
xxxxx