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11-29-2011, 09:55 PM   #1
LukeE
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Gday from Australia

Hello Im Luke and i was diagnosised with crohns a year ago (november 2010), my symptons are only pains in my stomach sharp and uncomfortable, i have no bleeding , no diarrhea, no vomiting. Apparently my intestine is virtually closed. Im still trying to come to terms with how to deal with the pain, as i have been in discomfort for a month straight, is that normal? Anyways if there is any tips plz feel free to tell me, also is exercise good for it?
11-29-2011, 11:17 PM   #2
Crohn's 35
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Hi Luke to the forum! You don't mention any medications. But narrowing can be very painful and dangerous. The intestine is very thin and can easily be blocked totally and you will be in excruitating pain. I would think you need a colonoscopy as to rule out scar tissue or strictures, either way medication may not help. You should not be in pain constantly for a whole month! You must be losing weigh. Do you vomit? If you start to you could be severly blocked and therefore to to the ER.

Many here from Oz, they will be here to help you. When do you see your doctor next? Keep us updated.
11-29-2011, 11:34 PM   #3
LukeE
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Hello Pen, Im currently on no medication at all, no vomiting and yes i have been losing weight (all that hard work at the gym down the drain lol) the colonoscopy shown narrowing due to scar tissue. Been going to my local GP , im going to another specialist in March as the specialist here are all booked out for a while The GP thinks i may have an infection that may of been caused by partial blockage which will explain having a fever and waking up in drenched. Had an x-ray to show no blockage.
11-30-2011, 12:13 PM   #4
Jessi
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Hi and welcome, Luke.
I'm sorry you're in so much pain.
You definitely need to see a GI.
I hope they don't make you wait too long.
If so, I'd consider going to the Emergency Room.
Pen's right.
This may be serious.
Are you able to have any bowel movements at all?
Do you feel nauseated?
I sure hope you're okay.
Hang in there and keep us informed.
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~Jessica

Dx'd with Psoriasis in 1993
Dx'd with Psoriatic Arthritis in 2004
Dx'd with Ulcerative Colitis on May 18, 2011

"Life isn't about waiting for the storm to pass... It's about learning to dance in the rain." ~Anon.
11-30-2011, 12:38 PM   #5
Crohn's 35
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Well hate to tell ya but if it if is scarring surgery could be around the corner. Nothing helps scarring. Good that you have been looked after. Keep us informed.
11-30-2011, 12:44 PM   #6
jaggartini
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Hi Luke........

Waving from the East Coast of Australia Sorry to hear you are not well.
Have you been given anything for pain? What options has your specialist given you so far?
__________________
Ulcerative Colitis since 2004

Currently taking:
4 x 1g sachets Pentasa (every morning)
5mg x Prednisone
Probiotic Daily

Allergic Reaction to Imuran May 2011.
Reaction to Cyclosporin Nov 2011.
I've said no to Methotrexate as it sounds toxic and GI doesn't like using it.
Next stop may be surgery.

Had a major flare last Nov, hospitalised where I haemorrhaged. Ended up in ICU and blood transfusion.

.
12-01-2011, 11:16 AM   #7
LukeE
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WOW i cant believe how friendly and helpful everyone is on here, i wish more ppl around the world would be like the ppl on here . no wars thats for sure, thank you to every one.
Jessi my bowel movements are regular which even surprised my specialist.
jaggartini hello from the west coast, no pain relief taken and been to doctors GP on the 30th nov and she said she thinks i have caught a bug which is delaying my recovery as my ammune is low and can only work on one thing at a time so she gave me some antibiotics, and outcome = today 1st dec best day i have had in over a month virtually pain free, no aches and had energy to last the full day at work.
Im trying to get a second opion from a specialist but booked out till March next year.
I have noticed alot of ppl on here take B12 injections, i currently take on my behalf B12 sublingual 1000mcg which i dissolve under my tounge and i have seen and felt the difference, my blood test results before showed low count, after 3 months of taking them my count was to be high near saturation level

Again thank you to everyones freindliness and helpful.
12-02-2011, 12:55 PM   #8
Jessi
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I'm really glad yesterday was a good day. I hope it continues.
12-08-2011, 05:26 AM   #9
LukeE
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hello and thank you to everyone support, sorry i havent been inline for a while, as i stated before i had a good day, well that lasted about 2 days then back to the usual discomfort in my whole bowel region including under left breast. Also have intense pain in my back that got worse to the point i was unable to sleep or move at all.

UPDATE: ended up going to chiropractors yesterday to find my whole back was out so he put it all back in for me just still a lil bit tender from the inflamation but definelty lot more ease than before.
Went back to the GP and asked is the pain/discomfort im getting in my whole front region related to crohns especially for over 6 weeks and she said unfortuantely its related to the flare up and just have to wait it out till i get better. Hmmmmmmm.

Thoughts anyone???
12-08-2011, 04:32 PM   #10
Angrybird
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Hi Luke, I have never been told during a flare up that I need to wait it out until I get better. If she thinks you're on a flare up surely she should be treating your for this? I think you mentioned that you have an appt in March with a hospital doc? Personally I don't think this is an acceptable waiting time, don't the chaps over there have to make sure they see people within a certain time after a referral has been sent to them?
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Angrybird

DX: Crohns July 2002
Surgery: Ileocecal Resection Sept 2011
Now:Tummy behaving itself and new mummy to baby Nicholas
Current Meds: 6-MP 75mg,B12 injections every 3 months
Previous Meds: Budesonide, Prednisone, Remicade, Pentesa,Hydroxychlorequine,Azathioprine (tried twice) and Methotrexate
12-08-2011, 09:09 PM   #11
LukeE
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i do agree march is a long time to wait, i havent heard of being seen within a certain time of referal. My GP obviously thinks im not too serious then , lol yeah right
12-08-2011, 09:37 PM   #12
TeresaPro
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can you get a new gp??? You should not have to "wait it out"
When i am hurtting alot, i find the heating pad sometimes takes the edge off. When i flare i stick to liquids..kinda boring but it gives your digestive system a bit of a break and not have to work so hard, without starving
Healing thoughts sent your way!!
12-08-2011, 09:54 PM   #13
DustyKat
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Hey Luke,

Gotta say that's one of the worst bits of advice I've ever heard! Wait it out until it gets better, WTH???

There are many extra intestinal manifestations of Crohns and one of them is pancreatitis. It often presents as left upper quadrant pain or stomach pain that radiates through to the back so that may be something to consider.

I would be getting on to the GP and getting them to ring the specialist and either discuss your case with them and get you onto a treatment plan now or get you in as an urgent patient.

Dusty. xxx
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12-09-2011, 12:00 AM   #14
LukeE
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thanks you Teresa all tips welcomed thank you.

Dusty thank you i will ask my specialist as he is apparently chould be calling me this afternoon.

well today im feeling pretty good as the inflamtion in my back has gone down so feel free is great, started the anitbiotics yesterday and keeping to pasta and white bread and water and so far pain in torso is very minimal so one of my better days in the last 6 weeks , i hope this keeps up that way might be pain free by end of weekend or start of next week fingercross
12-09-2011, 06:29 AM   #15
poop
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Hi Luke, I'm from Perth as well
Have you tried panadol for the pain? It doesn't last that long but it sometimes can help. If the pain becomes unbearable and nothing is helping then you should probably go to a hospital to get checked.
Regular exercise is good when you're up for it because it can reduce the pain over time but you shouldn't get into heavy/intense workouts when you're sore because that can usually make the crohn's worse.
12-09-2011, 09:15 AM   #16
Crohn's 35
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Hey Luke you may want to read this, I discovered it the other day. NO means do I think this is you but you could read this for yourself and see. http://spondylitis.org/about/ibd.aspx
12-09-2011, 11:13 AM   #17
LukeE
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Hi Poop, thanks i havent tried panadol, been taking panamax which last about half hour but better than nothing, i will try panadol next cheers.

Pen thank you, that was a good read only 2 symptoms i show from that are the adominal pain and pain of the entire spine, i havent had any joint soreness of any limbs now any bleeding but i will be keeping close tabs on that in case thank you.

again its amazing how helpful everyone is from around the world with the common ground being that we suffer from pretty much similair disease (unfortunately) it would be great to have met you all in better circumstances .
12-09-2011, 02:41 PM   #18
DustyKat
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Hey Luke,

Panamax is the same as Panadol, just a cheaper version. Now some people swear that the generics don't work as well as the brand Panadol even though they both consist of 500mg of Paracetamol. Your call!

Dusty.
12-09-2011, 11:46 PM   #19
judithh
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I am in brisbane and was diagnosed with crohn's 8 years ago.

I have resisted taking regular medication until 2 weeks ago after a bad flairup.

The pentase side effects - like I am being choked, pain in throat and extending out to the shoulders - after 2 weeks on it.

Has anyone else had this?
12-10-2011, 01:33 AM   #20
TeresaPro
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pop tarts are what keep me alive...lol i don't drink nearly enough water..( but i do drink tea..all kinds of tea) Well glad your feeling a bit better today. Lets hope it keeps going that way for you.
Hugs and healing thoughts.
OH MERRY CHRISTMAS!!
12-10-2011, 03:18 AM   #21
crazycanuck
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Hey Luke Welcome to the forums here. I agree with others that there is no way you should be waiting anything out.

I had scarring from healing "too quickly" in a bunch of areas in my intestines after starting Remicade and I was narrow in places. I had "surgery" to help it out but that consisted of basically the same thing as a colonoscopy except instead of a camera on the end it had a balloon of sorts which they just inflated on the narrow parts to stretch things out again as an attempt to keep off of taking out portions of the intestines to help instead. Which may be something to ask about as well? I'm not entirely sure if it was really scarring or what was going on with mine but it may be something to ask about.

Best of luck and for pain I love heating pads and massages from my girlfriend on my stomach feel very good. I find exercise helps to temporarily stop symptoms for me. I've been kind of sick the last few days in exam time here but I went snowboarding today for 5 hours and not once had to go and never while playing hockey even in my worst times do I have to go while playing so I feel like it really helps.
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Diagnosed October 2007
Currently on Remicade 400mg (October 2010)

Tried Budesonide (april 2010-july 2010) & Asacol (october 2007- dec 2009) & Imuran (Dec 2009-Dec 2011)
12-10-2011, 07:38 AM   #22
LukeE
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Teresa, thank you and merry xmas to yourself and family

Crazycanuck, cheers mate, I will have to go out and find a girl friend so i can get the massages too. Good to know excercise makes that much of a difference to yourself, I have noticed when i was able to do do slight exercise like a brisk jog even with no motivation i found afterwards i felt good for a bit, well longer than the pain killers do hahaa.

Thank you all
12-17-2011, 09:25 PM   #23
LukeE
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Thought i would give you an update, i went to ER last night cause the back pain was too much and the flare up still not gone. The ER docs were even surprised to see that im not on any meds with crohns, and due to my specialist not having me on any meds they were on unable to give me anything. As for the back pain the gave me oxi-codine which reduced the pain, after i had told them codine and ibuprofen is no good for me, oxi-codine worked a treat and with that they have given me a perscription for pantene forte with oxi-codine, i found oxi-codine not to cause me any pains in my crohns.

Has anyone else found this also does anyone else get a sore back? the oncall specialist claims the back is unrelated to the crohns.......

Input anyone?
12-17-2011, 09:41 PM   #24
kimmidwife
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Hi Luke,
My daughter has crown's and has never complained of bad pain. I would ask for an MRI of your back to see if maybe there is an injury to your back unrelated to the crown's. I also have to agree with everyone else that it does not seem like your doctor is doing the right things with you. I can't understand why they don't have you on treatment. Can you speak with your gp and get referred to a different specialist?
__________________

Crohn's Dx'ed Sept 08
Allerg Imuran Sept 08
Fail Remicade Jan 09
Methotrex Oct 09-Aug 11
Pentasa stopped - nosebleeds
EENOct 31 - Nov 28th. Too hard!
Retried Remicade Dec 11
Stopped due 2 Anaphylactic Reaction
LDN Jan 2012-June 2014 Got My daughter back!
New secondary diagnosis: Gastroporesis Dec 2013
Lost remission June 2014
Started Entyvio April 2015. Decreased to every 4 weeks October 2015. Praying for remission.
12-17-2011, 10:39 PM   #25
LukeE
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hi kimmidwife, they took an xray last night and shows all ok, i have booked an appt for a 2nd opinion with a specialist but she is booked out till march but i am on the cancellation list.

what reactions happen if we take ibuprofen with a flare up?
12-18-2011, 03:30 AM   #26
Grumbletum
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Hey Luke
Don't take Ibuprofen. I don't think you'd get a massive reaction, but it's known to aggravate the condition.
I do wonder about some of your docs!
Backache is a very common symptom of Crohns and there are various reasons for it. Inflammation is pushing on all sorts of things in there. I get bad pain right in the small of my back, although less so now.
I think your GP could be a bit more proactive too. When I finally got a diagnosis, I had over a month to wait to see the GI. But I was suffering so much I called my GP and she prescribed a mild dose of steroid to tide me over.
I'd call the GP again, and if she won't do something, maybe it's time to find another if you can.
__________________
Dx Crohn's terminal ileum April 2011
Ileocaecal resection & partial cystectomy Sept 2012
3.5 years happy remission, in mild flare since Feb 2016 with related Portal Vein Thrombosis

Previous: Prednisolone, Mesren, Omeprazole, Infliximab, Azathioprine
Current: Pentasa, Librax, Warfarin
Helen x
12-18-2011, 04:32 AM   #27
LukeE
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what is good to take for the back pain as the panamax i have been taking which is similiar to panadol is now doing nothing
12-18-2011, 05:29 AM   #28
DustyKat
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Hey Luke,

In my experience, it would seem that most docs here prescribe Endone (oxycodone) for moderate to severe Crohn's pain. It is certainly what my kids received in hospital as oral pain relief, as well as Panadol. Most hospitals will only give a limited supply when releasing you but you should be able to have further supplies prescribed by your GP. If they are reluctant i would be contacting the GI's office.

Both of my kids have found it very effective in controlling pain when they have needed it.

Good luck!

Dusty. xxx
12-23-2011, 03:24 AM   #29
LukeE
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UPDATE: Ok thank you dustykate, i have now have a prescription for endone and now on meds and they are working wonderfully, im now on Prednisolone and loving the days now, feeling good after over 7 weeks and loss of 8kgs i can finally smile and laugh and best of all im looking forward to xmas with my family.

BIG thank you to everyone, would of struggled alot more if not the help for everyone on here, thank you and merry and safe xmas to all on here and also your families and loved ones, my thoughts and best xmas wishes to you all.
12-23-2011, 06:37 AM   #30
DustyKat
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Thanks for the update Luke. It's fab to hear that you are getting on top things! YAY!

Enjoy your Christmas mate and have a happy and healthy New Year!

Dusty. xxx
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