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Lulu

Joined
Feb 23, 2010
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86
Hi everyone....

I am a 19 year old female who until last year had never been sick in my life. Starting feeling very tired and generally not myself in about April 2009. Was prescribed iron tablets but continued to feel unwell. Was deployed on exercise (army) in June 2009 and experienced extreme stomach pain. Was taken to local hospital and underwent a laprotomy. No definite diagnosis but was suspected I had a parasitic infection and was transferred to the nearest capital city. Had treatment for parasites and after recovering from op was sent back to home town.

Started to feel unwell again in August 2009. Was admitted to hospital and underwent testing. Released for the weekend to await test results and an unknown abscess ruptured through my original scar.

Underwent emergency surgery, another laprotomy and drainage of the abscess.
There is no Gastroenterologist in the locality I am posted so it was suggested that after recovery from op I be flown to a city with a GI (4 hour flight away).

Specialist did a capsule endoscopy and diagnosed Crohn's. This was in December 2009. Although physically I am very well, back to my pre-surgery weight, no diarhea (ever) and feeling great, unfortunately my bowel is still very inflamed and constricted in parts.

I was prescribed Imuran, initial dose of 25mg which I have just started this week. Due to no specialist where I am the surgeon that performed my last op has agreed to monitor me in consulation with the specialist interstate. While not ideal it is the best that can be done for me at the moment.

Was told last week that I now have a hernia due to the two ops close together so will have to have that dealt with once by bowel settles down.

Now it looks like my career is in jeopardy. Should find out the outcome of that in the next month or so, not looking good for me though.

Thanks for the great forum, very informative. Hope to share the ups & downs of life with crohn's with you all.

thanks...
Lulu
 
Hi Lulu, welcome. I hope things start to improve for you very soon. Where do you live? I'm in Yorkshire, in the UK. You'll find lots of good advice on this forum. I've found it to be a really supportive environment. x
 
Thanks Violet,

I'm currently in the northern part of Australia. I actually feel really good considering I havent been on any medication excpet for Mesal that the surgeon prescribed after the second op. Specialist said it wasnt suitable for me but while I feel good to keep taking it. Havent been on any steroids which I find surprising. Thought I would have had a course of them to get the crohn's under control.

I am hoping that now I have stared the Imuran that things should settle down quite quickly. I have had so many different doctors all over the country all thinking something different is wrong with me. I dont think the army has come accross Crohn's too often as they dont seem to know what to do with me either.

So hoping I dont join the ranks of the unemployed soon but trying not to let the crohn's stop me from enjoying life.
 
Hey Lulu.

I had to take some time out when I was first diagnosed (a year & a half ago) but I'm back at work full time now, in a much better job, with a larger salary! My career is important to me so I can empathise with your concerns in that respect. I had a lot of stuff going on at the time of my diagnosis (my Mum was terminally ill - this made dealing with the first flare up of a chronic illness even more difficult. I couldn't work at that time).

Things will get back on track for you but there may be times when you need to take it easy & look after your body & your mind.

Love & good vibes Lulu. xx
 
Welcome Lulu! I hope things all work out for the best for you, sometimes it's hard enough just dealing with the chronic illness, and then all sorts of other things come flying from other angles because of it. :(
 
Welcome Lulu
lots of great people here to keep you sane whilst you wait!
hope things get sorted soon,
lotsa love
 
Hi and welcome Lulu...I hope things settle down for you quickly. Do you know the final dose of Imuran that you'll be on? I know I had to ramp mine up gradually to the dose I stayed at (150mg) and didn't really start feeling better till I was at that point (it took about 2 months). Good luck to you!
 
Lulu - The progression of your disease is almost identical to mine, except I was not treated medically until December. I started feeling bad around July of last year and I brushed it off thinking it was nothing. I mentioned it to me gynecologist in August and she didn't think it was anything. Im December it got worse and I ended up in the hospital with an abscess that they drained (no surgery thankfully!). Yesterday I was finally officially diagnosed even though Crohn's was the word all the doctors kept saying in the hospital. I too have been healthy with no major medical problems until now.

I too am at a transitional point in my life because of this disease. I had JUST gone back to school last August and finished my first semester of graduate school when this all happened and it was a tough decision to put school on hold until I could get my body back on track. Taking a break can be scary, but for me it was worth it! There's a lot to process with a disease like Crohn's, so just make sure you give yourself the time you need to heal and take care of yourself, whatever that may entail. :) Careers and school are great, but if you don't have your health it makes it a lot easier to enjoy either!

Good luck and I hope you find the encouragement you need on this board!
 
NYX.....Specialist seems to think max dose of Imuran will be 75mg. I am back to my normal weight of 50kg so that seems about right to me. Hoping that on such a low dose that I dont encounter too many side effects.

Dream..... I think that is the reason I took so long to be diagnosed properly. I didnt have any symptoms such as diarhea etc. First colonoscopy showed damage not classically crohns. So from feeling unwell in about April 2009 I didnt get a proper diagnosis until after the capsule endoscopy in Dec 2009 which is why I have only just begun treatment now.

Violet....what sort of career have you found that accommodates your condition. I have always wanted to be in the defence force and have never considered any other career until now. I went through all the typical stages of grief... denial where I thought well maybe it isnt crohns afterall. Then I went through the why me, its not fair stage and I think I am now finally at the acceptance stage. I feel fortunate that I dont have a much worse condition than what I do and have been very lucky to have had all medical treatment paid for by defence, which they continue to do. I also had a lot of time off work last year recovering from the ops which was also on full pay so I really cant complain. So I have a lot to be thankful for really.
Not to say I still dont have bad days where I think life is so unfair.....
 
Welcome aboard lulu
hope ya can get somethin sorted out soon an continue ya chosen carrier

good too see another fello Aussie on the forum
 
Lulu said:
NYX.....Specialist seems to think max dose of Imuran will be 75mg. I am back to my normal weight of 50kg so that seems about right to me. Hoping that on such a low dose that I dont encounter too many side effects.

Dream..... I think that is the reason I took so long to be diagnosed properly. I didnt have any symptoms such as diarhea etc. First colonoscopy showed damage not classically crohns. So from feeling unwell in about April 2009 I didnt get a proper diagnosis until after the capsule endoscopy in Dec 2009 which is why I have only just begun treatment now.

Violet....what sort of career have you found that accommodates your condition. I have always wanted to be in the defence force and have never considered any other career until now. I went through all the typical stages of grief... denial where I thought well maybe it isnt crohns afterall. Then I went through the why me, its not fair stage and I think I am now finally at the acceptance stage. I feel fortunate that I dont have a much worse condition than what I do and have been very lucky to have had all medical treatment paid for by defence, which they continue to do. I also had a lot of time off work last year recovering from the ops which was also on full pay so I really cant complain. So I have a lot to be thankful for really.
Not to say I still dont have bad days where I think life is so unfair.....
Click to expand...


Hi Lulu. I'm a psychological therapist.

I'm having to take imodium daily at the moment & I'm drinking fortijuice. I'm pretty determined to keep working, as much as I can. My meds just aren't doing the trick now so I'm off the the gastro Dr in a couple of weeks. I can accept this disease but I need for it to be better controlled.
 
Hey there Lu Lu...Good luck to you....Sorry to meet you this way. The people are super good. Lean hard!!! We are here!!! S :)
 

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