Update and going backwards

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LukeE

Joined
Nov 29, 2011
Messages
44
Hello im writing from my hospital bed, well i have been in and out of hospital since new years Jan3rd and seem like im going backwards, one moment im doing well and improving then BAM i take 10 leaps backwards, after a ct scan on jan 20th and found swelling of intestine bigger than a grape fruit pushing into spine, i was bombarded with timetin anitbiotic to get the bugs out, after improved and feeling good and out of hospital for a week, i bought a house :), went to work for a day, was on azathirpine for 2 days then on the weekend BAM back into emergency again, back on timetin and possibly now looking at surgery, i find out tomorrow. the talk has been about removing section of large intestine, appendix, and 50cm of small intestine and then a reversable stoma. Now this is becoming more a realisation im starting to freak out alot. i have never been to hospital until jan 3rd this year and i cant seem to stay away now. also add to the factor of freak ok going through this alone as parents live in country and if goes to surgery they will look for ways to get to my side. I was allowed a day pass out of hospital today to grab my laptop. :( Oh and i have lost over 13kgs.

i apologise for the long read.
 
Hello LukeE, Im sorry to read about everything you've been going through. I had never been to the hospital before my Crohn's diagnoses either. I was diagnosed in Jan last year and by March I was in the ER with a raging abscess and fistula. I was sent home with a drain only to be rushed back in a month later for emergency surgery. I know how lonely it can feel being in the hospital. The day passes are what kept me sane I think. Its hard to see the light at the end of the tunnel when it feels like your body is failing you. I lost 65 pounds as well (not sure what that is in kgs). My best advice for you is take it a day at a time. And as hard as it is try to staying positive. Im a firm believer that positivity help you recover faster. Hang in there.
 
Luke, I'm so sorry you are going through this! It sounds like surgery might be the best option for you at this time. I know this must be very frightening for you, and know that I was in the same boat. Emergency surgery.

There will be light at the end of the tunnel. I really hope they can get you sorted ASAP.
:ghug:
 
its official im going under the knife in the next day or 3 days max errrkkkkk freaking out, also work isnt helping with the fact i have no more sick leave and annual leave left and are saying even after the surgery with the stoma they dont want me back at work till fully recovered, the stome will be for 12 weeks........ i cant go unpaid and sit at home for that long geees.
 
Oh dear, doesnt Australia have short term disability, or sick pay. I know its not full pay. Here I got about 1/2 pay.

Calling all Aussies on the forum??
 
Sounds like a trip to Centrelink might be in order!
I think these days you can do most of it over the phone.
I'll be really interested to find out if you're eligible for one of the income support payments. Let us know!
 
Hey Luke, I am so sorry to hear that you are now facing surgery :( I hope you are able to get something sorted with regards to sickness allowance, the last thing you need right now is the stress of where you are going to get an income from. What kind of job do you do, surely once you have got to grips with the stoma they would 'let' you back? Keeping my fingers crossed that the op goes well and that your parents can get to you for a little while at least :hug:
 
thank u for the link, i have contacted centerlink and the fortnightly amount i can receive for off work and no income and to help cover rent/mortgage is only a quater (1/4) of what i normally earn a fortnight, its going to be tough but better than nothing. thank u.
Just been informed going for surgery tomorrow evening. *GULP*
 
Thanks from me too for the link Dusty.
It was very informative and has given me a bit of comfort should I ever get in dire straits.
 
Hi Luke,

My 14 year old just faced surgery in March, 2011 for Crohn's. I know the fear as a parent. It's great that you may be able to get some income. That's a positive thing. Anything positive that you can think about, you should focus on. I have learned this from my daughter. I'll be praying for a speedy recovery.
 
Thank you hopeful mom, im trying my best to focus on the positives, the main positive i have at the moment is the while being in and out of hospital , i just bought my first house so trying to stay focus and excited bout that and looking forward to getting out and moving into it :) thank you to everyones well wishes and prayers.
 
veteran spouse of crohns pt for 35 years. horrible disease first surgery he was in remission kinda for 5 years w/ prednisone. and other meds. thinking of you they are right stress makes flares worse. It will be ok. keep posted
 
Luke, best of luck with the surgery. Keep us posted.

Come visit in the stoma subforum.
:goodluck:
 
Good luck Luke! Glad to hear you are eligible for some financial assistance! Your new home will be waiting for you!
 
I am also facing surgery. Maybe by the end of the month. It sucks what we Chronies have to contend with.. Hang in there! You will probably be in the hospital for a week or so, and I hear it's about a month before your guts start to feel normal. I think it's lame that they want to do a stoma, only to reattach things in a couple of months... That is a lot of surgery to have to go through...

I am going to see the surgeon Friday, so I guess you are better off than I am, as you are having surgery now. ( I wish I was having mine a year ago..) remember to walk around as much as you can stand to, and I hear chewing gum is good to get the gut moving again.

Fingers crossed for you mate!
 
Luke,

The upside is once the infected and inflamed intestines are out, you should feel much much better. The downside is the waiting game.

The issue with OUR disease is...no one truly knows whats going on until they go in and see what the issues are. My ostomy was reversed before I left the hospital 14 days later.

Keep Positive Spirits! Positive Attitude makes recovery a Positive Experience!
best wishes.
 
16hrs till surgery, all marked up for stoma so thought i would share a pic of me before also with my sense of humour. :ybiggrin:

8feb2012sjoghsubidaybeforesurgery.jpg
 
ok up date, after bieng told its going to be a fresh start for me after removing 1 meter of small intestine and the abseth and 27 staples down my tummy, it seems to have changed today after my specialist has now told me 2 days before discharged that during surgery they discovered 6 small indicators on my small intestine of more crohns active. after all week saying i have afreshstart the dump this on me... great. so now i they want me to start in the next few months on some newish type of "biological agents". where requires injections. that all they have told me till consult in a month or two.
Does anyone have any idea what they may be referring to and do i have anything to worry about and side affects etc??? they said azathirprine isnt strong enough to manage the amount i have??? plz help now im confused and lost again....
 
Sorry to hear you still have active Crohn's and that it was dumped on you at the last minute! I am in the process of going on one of the biologicals, Humira. Yes, the re are side effects. They are listed in the treatment section. I am just so ready for remission. I have not had surgery, so maybe someone who has can give you more info. Wishing you a speedy recovery!
 
Well that sucks, they could have mentioned this a bit sooner :( Wiith regards to the op itself how are you doing? Was it better or worse than you thought? The med could be Humira, the only other one I know is Infliximab but this is where you go in to hospital for infusions every few weeks which doesn't sound like what has been mentioned to you....
 
thank u carolhew and agrybird, the op went fine still tender and sore and stiff. I go for walks and have a bit of a sore back i think its fro the hospital beds as well as a bad habbit of walking hunched over , i have to learn to walk up straight again as for 3half months i had been walking hunche over to deal with the previous pains.

Im hoping what ever the biological agent is that it helps and not so daunting as i firsst think it may be.

Danherefordshire, i used white board marker and the surgeon and anethisiast had a good laugh at it :) as it was white board makers came off pretty easy for them. At least this way they wont forget me in a hurry and maybe made their everyday day of surgery into something interesting for them :)
 

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