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shayler

Ieleostomy/ colostomy bag, Ulcerative Cholitis and Chrones thread

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Hey guys, I just had an operation which pretty much removed my entire large intestine because I had been suffering from a condition known as "Ulcerative cholitis" since I was 13 years old.

 

The past 2 years were really bad (Going to the toilet 15+ times a day, passing blood, becoming anemic, losing 15kgs etc) so I decided to opt for the "cure" (surgery) as the 10 pills a day and experimental infusion medication wasn't working.

 

And this left me with a stoma and colostomy bag. http://en.wikipedia.org/wiki/Ileostomy

 

Just wondering if I'm one of the only 22,000 in Australia that has one that's on this site? Or if anyone's had one temporarily like mine is, or if anyone knows someone that's had one?

 

They suck balls, but its only temporary and its not cancer so I'm looking at it positively.

 

Kinda serious thread but meh, thought I'd ask and discuss.

 

Alex.

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yep, another kid on here had one i think, can't remember his name, i'll try to find it.

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Dori31 i think?

 

pretty sure he was stuck in hospital for a fair while.

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So, is this going to be corrected? Or is this a life thing?

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Yeah going to be reversed on the 23rd of this month thank god. Just wanted to hear about other peoples experiences with them. They're not a good time haha.

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I have Ulcerative cholitis but thankfully not had to have the bag.

 

Found out I had it at 15 or so.

 

Checkups and all that but seems to be good.

 

I try to eat healthy and drink very little booze.

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how do they reverse it?

 

Basically sew up the small intestine thats sticking out of my body, push it back in, then sew up the hole. 45 minute surgery.

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I have Ulcerative cholitis but thankfully not had to have the bag.

 

Found out I had it at 15 or so.

 

Checkups and all that but seems to be good.

 

I try to eat healthy and drink very little booze.

 

Yeah I didn't really eat heaps healthy and drank a lot. But I used to get yearly flare ups when I was doing the right thing. Sucks man, hope you don't have to get the surgery!!

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Dori31 i think?

 

pretty sure he was stuck in hospital for a fair while.

 

Yeah Dori31 had something similar going on.

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i have this also... i refused to take my medication and kinda believed my body would heal itself... i was diagnosed 5 years ago... took my tablets for about 2 months... and that was the last time i had a *checkup*... went to my GP for something else... he asked me bbout my colitis. i said all good, everythings sweet. he pressured me in to getting a colonsopy AGAIN coz it had been so long...

 

anyway i agreed, the day after the colonscopy... shits FULL on hit the roof. and things have been terrible since. i went to my specialist for a pre booked chat after the colonoscopy, and full on raged. and he said *oh there would be a little bit of irritation*.... WTF MAN. so now he gave me this other bullshit tablets. steroids aparently. were okay for a couple days. now im off them again. because i refuse...

i did some research and found out the tablet just ruins your immune system. turns out my mates dad was on them for something else... and now he has a low blood count etc yada yada. alot more f**kED UP issues. and the doctor said its because he took to much of the tablets he was given! its not salsopyrine its the next step they give you

 

f**k doctors and f**k *medication* i will shortly be looking in to a natural way of getting over it... natropath here i come!

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I was also on th roids and had MASSIVE side effects to it so I had to stop them. Also did the immune system tablets and they did sweet f**k all. Then I got onto an experimental drug which I got infused directly into my veins once a month, and again that didnt work. So that's why I had to take the surgery path. I've been told all liquid diets can help, also acupuncture and maybe other methods. But there's a bloke who reckon he cured his who's names Paul Nison. He's got a book, you should check it out

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What side effects did you have to the steroid drug? I haven't been on it for years, just the salsopyrine.

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I had rashes on my chest, hot and cold flushes, mood swings, pimples, couldn't sleep, constant tiredness, headaches and itchiness. Was f**king shit

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yeh i got diagnosed when i was 16 with crohns disease, im putting up with all the mediation bs cause quite frankly- having my bowl outside of me and shitting liquid into a bag scares the shit (lol) out of me

and the doctors cant guarantee they will be able to perform a j pouch (plumb you back to normal) after 2 months (or ever) so yeh knowing my luck, i'll be stuck with the bag for life

 

so far these meds are keeping me at a shitty stable condition while i try to finish yr12 haha(about 6-9times a day, bloody stool)

imurane 250mg

calcium

fish oil

vitamin D

swiss for men

iron

gastro-stop

zurtec

 

and infliximab infusion every 8weeks

 

 

heres: my other thread from my last time stuck in hospital (my last major flare up)

http://www.nissansil...pic=459439&st=0

 

gtg to school but will talk more later :thumbsup:

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and drink very little booze.

 

Ive found that beer really f**ks my shit up, but spirts actually have a positive effect :lol: so its jimmy, jack and vodka from now on haha

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I will join in lol... Doctors dont know whether i have UC or Crohns. I was diagnosed about 5 years ago. Ever since then it has been up and down. I have been on just about every drug under the sun. Its at the point where they are trying to get me on trial drugs because there are no other Drugs on the PBS that they can try me on. the Doctors have suggested surgery, get the colostomy bag and J Pouch but personally i dont want to go under the knife and will exhaust all options before resorting to it.

 

Random bit of info the singer Anastacia has crohns. Im sure you can all understand why she sang this song...

http://www.youtube.com/watch?v=HzfyCuPVpCY

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I had rashes on my chest, hot and cold flushes, mood swings, pimples, couldn't sleep, constant tiredness, headaches and itchiness. Was f**king shit

 

what steroid where you on? I've been on Prednisolone for about 2 months for autoimmune hepatitis and I have only really got pimples which whilst is a pain its a small price to pay for the fact that the drugs have almost brought back my immune system from effectively destroying my liver to almost normal again. I will say while I was on a very high dose I couldn't sleep, on the positive side I have never been more productive/focused then the 2 weeks I was on a high dose(gotta look at the positives!)

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I had rashes on my chest, hot and cold flushes, mood swings, pimples, couldn't sleep, constant tiredness, headaches and itchiness. Was f**king shit

 

what steroid where you on? I've been on Prednisolone for about 2 months for autoimmune hepatitis and I have only really got pimples which whilst is a pain its a small price to pay for the fact that the drugs have almost brought back my immune system from effectively destroying my liver to almost normal again. I will say while I was on a very high dose I couldn't sleep, on the positive side I have never been more productive/focused then the 2 weeks I was on a high dose(gotta look at the positives!)

 

 

I remember getting angry out of no where and the pimples + I never liked to sleep anyway.

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i knew a guy that had chrones disease, sounds very similar

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yeh i got diagnosed when i was 16 with crohns disease, im putting up with all the mediation bs cause quite frankly- having my bowl outside of me and shitting liquid into a bag scares the shit (lol) out of me

and the doctors cant guarantee they will be able to perform a j pouch (plumb you back to normal) after 2 months (or ever) so yeh knowing my luck, i'll be stuck with the bag for life

 

so far these meds are keeping me at a shitty stable condition while i try to finish yr12 haha(about 6-9times a day, bloody stool)

imurane 250mg

calcium

fish oil

vitamin D

swiss for men

iron

gastro-stop

zurtec

 

and infliximab infusion every 8weeks

 

 

heres: my other thread from my last time stuck in hospital (my last major flare up)

http://www.nissansil...pic=459439&st=0

 

gtg to school but will talk more later :thumbsup:

 

 

The whole colostomy bag thing scared the shit out of me too, but after trying EVER drug under the sun and even trial drugs over a 2 year period when my flare up was extreme, I was just over it. I looked and felt like shit 24-7, always tired, never keen to do anything etc. Honestly once you psyche yourself up it honestly hasn't been that bad with a bag. I can pretty much do everything like normal and eat and drink anything! Its also fun to gross people out with. But I would never want it for life. Btw when I doctor does perform the operation, he creates the J pouch in the first operation, along with the ieliostomy (what Ive had done) then later closes the ielostomy in a second procedure (the one I'm about to have).

 

Surgery is the cure for the disease at this stage, because its all a mental thing. Once science gets to the point where they can alter brain function without f**king you up, that's when they will be able to find a cure for UC and chrones.

 

I will join in lol... Doctors dont know whether i have UC or Crohns. I was diagnosed about 5 years ago. Ever since then it has been up and down. I have been on just about every drug under the sun. Its at the point where they are trying to get me on trial drugs because there are no other Drugs on the PBS that they can try me on. the Doctors have suggested surgery, get the colostomy bag and J Pouch but personally i dont want to go under the knife and will exhaust all options before resorting to it.

 

Random bit of info the singer Anastacia has crohns. Im sure you can all understand why she sang this song...

 

Like I said above, its honestly not that bad. Like I'd never wish it upon anyone and would have given anything not to have had it doe, but I did exhaust every possibility and even did a drug trial but nothing worked at all. The scars aren't that bad either, kinda cool really.

 

I had rashes on my chest, hot and cold flushes, mood swings, pimples, couldn't sleep, constant tiredness, headaches and itchiness. Was f**king shit

 

what steroid where you on? I've been on Prednisolone for about 2 months for autoimmune hepatitis and I have only really got pimples which whilst is a pain its a small price to pay for the fact that the drugs have almost brought back my immune system from effectively destroying my liver to almost normal again. I will say while I was on a very high dose I couldn't sleep, on the positive side I have never been more productive/focused then the 2 weeks I was on a high dose(gotta look at the positives!)

 

 

Prednisolone too man. This is true, always gotta stay on the positive side!!

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