Hi from NZ everyone

[Katipi]

Hi everyone. I am new to the forum and hail from good old New Zealand. Fantastic to come across a forum like this where people actually understand the challenges involved with having Crohns.
I was diagnosed in 2001 after losing 20kg in six months, together with a lot of cramping etc. I was on Pentasa for a couple of years but decided to go off it to have a family. Two beautiful children later and that family is complete.
I struggled with my Crohns after the kids were born but just decided to live with it. Unfortunately, 7 years later I know longer know what it is like to feel normal. I have put up with Crohns for so long.
A new specialist this year completed a colonoscopy and decided to put me on Prednisone in June to try and manage things. I didn't handle the side effects too well so opted for Budesonide instead (90mg daily), together with Pentasa, iron and now mercaptupurine.
An MRI scan in August determined by Crohns was now aggressive with over half a metre badly ulcerated.
I have put on so much weight due to the steroids it's horrible and I am really struggling with that. My specialist now has me down to 30mg daily on the budesonide and is not confident the mercaptupurine will actually work. She now wants me to try humira which I am worried about. What are the side effects? The mercaptupurine was horrible initially with terrible nausea.
So that's a brief overview of my story. I look forward to interacting with you all and appreciate the advice and knowledge you all share on here. It's comforting to know others "get it".

 

[Jmrogers4]

Welcome Katipi,
I don't have much experience with Humira but take a look under treatments and Humira http://www.crohnsforum.com/showthread.php?t=29394. There are quit a number of people who have had great success with it.
I don't have crohn's myself but my husband and oldest son do. I hope you find the right treatment for you and are feeling better soon.

 

[Holly95]

Hi Katipi, I'm from NZ too! I can't offer you any help since I'm only extremely new to Crohns myself, but I'm sure you'll find some great help on here

 

[Geriatric Jukebox]

Hi Katipi,

Sorry to hear what you have been going through. I was on Pentasa before my diagnosis was confirmed. I had surgery to remove some damaged small intestine and clear up a blockage. The surgeon suggested biologics but my Gastro thought Pentasa would be sufficient. Seven months later my GP sent me to a specialist who ran some tests and found that the inflammation and stricturing had started again. He put me on Humira and it seems to be containing the progression of the disease. I still get the occasional flare ups and start a 21 day regimen of Budesonide to fight the inflammation. I try not to worry about the side effects because the alternative is more surgery and the majority of Humira users do not get the worst side effects. I caught a cold which turned into pneumonia due to the compromised immune system but that was treatable. If you start Humira make sure to see a Dermatologist after a while as it can cause some cancers. I had a few growths recently and one was biopsied as cancerous. In the end we all must make decisions based on the best available information at the time but Crohn's is not curable at this time and won't go away on it's own. I hope this helps.

Good luck with your recovery!

Regards,
Alan

 

[crow]

How is it all going there, Kapiti? I just lost 10 percent of my body weight in under two weeks. On Prednisone now.... seems to be working! Best from Wellington

 

[leezapeza]

Hi guys from good al Invercargill NZ it nice to have fellow Crohnies froms nz here I was first diagnosed in July of this year after 20 kg weight loss feeling gross and a abscess after a 5 day stay in hospital on antibiotics and steriods I was feeling heaps better then I came off the steriods and pretty much went down hill I had a colonoscopy that was ok small inflimation and tiny absess with in weeks it grew large I ended back in hospital they had to drain it that was ok but I just had a sess with the GI doc and now she wants to operate take part of the small bowel out where the abseses were in the illiem part I'm really nervous I'm not on any meds atm as the GI thinks it could cause more damage they gonna do I resection I'm just wondering about the recovery time for this ? Any ideas

 

[Geriatric Jukebox]

Hi Leezapeza,
Sorry to hear that you have to have a resection. Every operation is different depending on what they find and the recovery time depends on lots of factors as well.I had a similar operation but the surgeon was able to do this through a small incision through the belly button. I developed a small infection that had to be dealt with but I stayed out of work for about 6 weeks because there is no reason to rush a full recovery.I felt pretty good after about 3-4 weeks. Please speak with your Gastro about any meds she might put you on post-op to help stop recurring problems.I was put on Pentasa after my op. and within 7 months the Crohns was back. I'm now on Humira and that seems to be helping. Good luck with your procedure and recovery.

Regards,
Alan

 

[leezapeza]

Thanx for that hopefully my recovery is minamil as I can't afford time off work yeah my doc is going to put me on meds after the op not sure what though I'm not on anything atm as she feels it will make it worse or end up with another absess

 

[Layla]

Hi Katipi, another welcome from NZ

Leezapeza, I had a resection about 2 months ago now and am feeling a lot better than before the op. I was working from home after about 3 weeks and back at work part-time the week after, but knowing that I could work less if I needed to.
Can you discuss part time options?

 

[leezapeza]

Hi guys well I had my resection and then some they took some of my bladder as it was effected by the Crohn's and removed the reacted from the bladder to the bowel they took my appendix out and they also found I had a meckels diviticulum that I have had since birth never knew I had it and they found an absess there um the took the end part off my colon I got a pretty big wound right through my tummy and I got a catheter in to keep infections away from the bladder so I'm hoping I can look forward too a better year next year it only been 2 weeks since the op my GI has got me on metronazole too treat the crons for 3 months then put me on something called azathioprine and the night after the op I felt yuck I vomited and asperated had to have a tube up my nose and got treated for aspiration puemoea so I'm a bit overwhelmed and grateful to be alive

 

[Geriatric Jukebox]

My wife and I are sending healing thoughts your way and pray you have a healthy New Year!

 

[JennyT]

Hi Im a NZer too - I have a problem Im hoping someone might have had experience with, Docs and nurses in my rural area dont have any ideas .... I had a temp stoma in place following some major surgery in Auckland taking out part of my colon and in another spot part of my ileum. I have a problem and was wondering if anyone might know what to do cos medical staff seeing me don't. The resulting wound once the stoma was reversed will not heal - 4 months down the track I still have a 5cm x 1cm sinus hole that shows no sign of change after it healed from 9cms deep in the first couple of weeks. It is being packed, not packed, packed every day, left for 4 days - nothing works. There is no infection although it was badly infected requiring hospital intervention to begin with. Has anyone got any experience with anything similar? I'm at my wits end - it hurts!

 

[Anna's Bandit]

Oops.

 

[Layla]

Hi Im a NZer too - I have a problem Im hoping someone might have had experience with, Docs and nurses in my rural area dont have any ideas .... I had a temp stoma in place following some major surgery in Auckland taking out part of my colon and in another spot part of my ileum. I have a problem and was wondering if anyone might know what to do cos medical staff seeing me don't. The resulting wound once the stoma was reversed will not heal - 4 months down the track I still have a 5cm x 1cm sinus hole that shows no sign of change after it healed from 9cms deep in the first couple of weeks. It is being packed, not packed, packed every day, left for 4 days - nothing works. There is no infection although it was badly infected requiring hospital intervention to begin with. Has anyone got any experience with anything similar? I'm at my wits end - it hurts!

Hi Jenny, Sorry I can't really be of help as I have no idea what might be the cause. The only thing I can think of is that prednisone hampers healing, not sure if Entocort/Budesonide has the same effect.

The other thing I noticed is that you're on aspirin, that's usually a nono with CD as it can increase bleeding. Maybe you're on a very low dose for something else?

Is your GP of any help in coordinating things and maybe prodding Akl into action?

I feel for you, must be very hard living far away from one of the main centres!

 

[JennyT]

hello there!

I'm from NZ too living in Wanganui now. I was diagnosed 10 years ago but had crohns long before that. recently I had major surgery and currently I almost have a life back! I was on a high dose of prednisone for 9 months after i first got diagnosed and it was rough, I got the moon face and buffalo hump back as well as weight gain but it does go away when you stop! It did whack the disease in the guts (pun intended LOL) for a long while. All the best - you have come to the right place for support and info here - this site was a lifesaver for me. HUGS Jenny :heart: