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LukeE

Joined
Nov 29, 2011
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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?
 
Hi Luke :welcome: 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. :hang:
 
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.
 
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. :hug:
 
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.
 
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?
 
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.
 
I'm really glad yesterday was a good day. I hope it continues. :hug:
 
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???
 
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?
 
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
 
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!!
 
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
 
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
 
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.
 
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 .
 
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! :lol:

Dusty. :)
 
pentasa side effects

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?
 
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!!
 
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.
 
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
 
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?
 
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?
 
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?
 
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.
 
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
 
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
 
UPDATE: Ok thank you dustykate, i have now have a prescription for endone and now on meds :D 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.
 
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
 
I'm so glad you're feeling better. And just in time for the holiday. :hug:

Merry Christmas!
 
hello everyone, thought i better update so you all know i havent dissappeared into thin air, but i was hospitalised just on the 3rd jan and finally after going to the right ER with a letter from GP in hand i finally got on the way to proper attention to beat this pain so i can get back into beating crohns naturally. My inflammation levels were up to 120 but now after strong quaterzone steriods, metronidazole, prednisolone 40mg and sulfasazine for back inflammation. Also endone for pain. :) after 3 nights in hospital and jumped onto here as of this morning my inflammation levels are now at 17.

After reading mickey story of beating crohns naturally it show me hope not to rely on meds as i was told next flare up could be a string chance of surgery.
 
Heya Luke.... just wanted to say hi from another Aussie chronie!!!

Hope they find some answers and get you more comfortable ASAP!!!

JJ
 
UPDATE: sorry for being quiet, i have been readmitted to hospital after pains went sky high, went back to ER where the team of specialist there wanted to strt me on Azathioprine, i suggested to contact my specialist to see if he was back from holidays and to be transerred, long story short i got transferred to another hospital, my specialist lightly touched my stomach and ordered a ct scan.

CT scan came back with crohns developed more down my small intestine and causing swelling the size biggge than an orange pushing into my back causing the pain.

according to my specialist the first trip to ER failed to do their job discharging me with crp (inflammation) levels 120, the scond hospital i was poorly managed where they did more than the first ER but still should of sent for a scan and if i was to be started on the azathioprine my health my of gotten worse and also resection emergency.

been through alot now on iv line for strong antibiotics of timetin to reduce swelling and will need to consider resection in future with a stoma.
 
thank you kimmidwife
can anyone give me some backgroung on having a resection with a stoma plz?
Big thanks to Dusty to her write up on treatment section for Azathoprine 6-MP, im now armed with some questions tomorrow for my surgeon specialist in regards to this , thank u :)
 
Last edited:
Hi Luke, I am sorry to see things have taken such a turn for the worse :hug: I had a resection op which went really well but no stoma was required, do the docs definetly know this will be needed or is it something they have said there is a risk of?
 
hello :)

hi my name is katie, i am from australia and i am here on behalf of my partner and my mother as they both have chrons. today im here to ask a few questions to do with my partner....
my partner who is 22yrs old was diagnosed about a year ago and was perscribed azathioprine-WHICH HE HAS STOPPED TAKING! as he thinks hes better off without them...he eats whatever he wants whenever he wants and iv tried to help him but with no luck....
today however, i think he is either flaring up again or he has caught a stomach bug...i have tried everything to ease his pain, i called my mother as she has chrons too and she confirmed my thoughts of going to see his doctor or going to the hospital just to be safe but he keeps on changing his mind as to what he wants to do!!!
it is starting to get me really upset and frustrated and i am very stressed out...can anyone give me any advice as to how to handle him???:(
 
Hi Katie, would you agree that your partner is perhaps still in denial about this disease and how serious it can be? It is very important that he doesn't stop meds without first speaking to his doc, after all there is a reason he was prescribed this. It sounds like his tummy is now letting him know what it thinks about his actions. He must go to the doc. Have you sat down with him and discussed how he feeling about things? Perhaps he needs some councelling, I know others here have benefited from this.

NB welcome to the forum, perhaps also post on our support/my story forum about this
 
thanks angrybird :) i have asked him about it but with minimal responses...hes mainly upset that he thinks its going to stop him from living a normal life etc...i told him maybe speaking to someone outside of our lives who can look at things from another perspective might help but....well...this did not go down with him very well....its getting me so upset and stressed...i am currently pregnant so as well as worrying about this i am constantly worrying about my partner AND my mother! the coinsidence of my mother having this and then the man i love having this is very hard on me and i am trying to get through things...i just wish my partner could too
 
yes according to the surgeon its a definite as with the stoma it will help the small intestine heal for 12 weeks. They have advised me they will be removing approx 50cm of small intestine and the lower section of large intestine and appendix.
 
Aahh that's a fair bit, from the sounds of it though the plan is to reverse the stoma at some point?

katie, I will put a response on your other thread.
 
yes it will be reverse 12 weeks after to help allow the bowel to heal. is a stoma not common for resection?
 
Well it's not common as such but may be necessary due to the following reasons, I am talking "normal" resection here,...they will always tell you prior to a resection that you may end up with a stoma because they never truly know what the will find until they get in there.

Then there is the situation you find yourself in, that being acute inflammation. It is not possible to join two inflamed ends of bowel together so to avoid having to resect large amounts of bowel they create a stoma. They will only take out the part of bowel that is beyond saving. This then allows the bowel that remains and is inflamed, but viable, time to heal as no faecal matter is passing through it. When they go back in to reverse the stoma they are then able to join (anastomose) two healthy ends.

Dusty. xxx
 
ok so the stoma is more precautionary, well im more mentally prepared for it if it happens. I have been out of hospital for week and finished a course of oral anti biotics a few days ago but starting to feel lil discomfort in my back and twitches in my tummy, im going back to specialist tomorrow afternoon and i have a feeling he will want the resection. The bad news is i only have 1 week of personal leave left then im on unpaid leave from work, on the good news side while out of hospital and not at work i bought my first house :)
 
Hi Luke.
When I am having a major flare - my lower back completely seizes up and my spine becomes quite rigid. I hobble around like an old nanna and wear a patchwork of heat packs. Relief comes when the pred starts.
Hope your surgery goes well.
 
thanks samboi, i laughed when i had mental image of both us walking around town all rigid like old grannys lol, i will find out the outcome of what the next step is tomorrow afternoon, but im sure it the surgery.
 
Yay for the house :biggrin: Not so yay about running out of leave :( It is perhaps worth sitting down and having a chat with your employer about this and the fact that surgery is coming up? My employer was very understanding kept me on full pay for the 6 weeks I was off for my op, is there a chance this could happen for you?
 
there may of been a chance of that ages ago but my employer has recently forked out over half million on renovations and we now have a new account manager who plays everything by the book. So now i have no chance at all for that. I have contacted local gov't for assistance and im able to apply for sick assistane and also rent assistance :) its not the full amount but it wil certain help and better than nothing.
 
Hi Luke Can I ask who your specialist is? Sounds better then mine in Perth! Perhaps we can swap names, is that legal on this site?
 

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