Hi from New Zealand

[Kiwigal]

Hi Everyone,

Am new to this forum, but not so new to crohn's.

Was diagnosed 8 and a half years ago after being misdiagnosed with everything else under the sun for 6 years. Ended up losing 20kgs in two months after an abcess ruptured and put a hole in the wall of my small bowel which became a fistula. Was finally diagnosed and was told there was no other option than to have a resection. I went on azathoprine for 4 years after the surgey and came off it after so many great blood tests and results. Thinking I was in remission, last year I had surgery for endometrosis and other female things, which turned out to be masses of scar tissue. My surgery was being done by keyhole so they weren't able to check the bowel throughly. Had my first colonoscopy 3 months ago and they have determined there is masses of scar tissue on the inside causing a blockage where the resect was done. They have taken biopsies throughout my large bowel and have now said there is active crohn's throughout my large bowel. They were unable to pass the scope into my small bowel because of the scar tissue and how narrow it was (they even tried the smallest scope they had), which brings a new meaning to tight ass! :yrolleyes:

So I have now had an MRI scan and they have told me 20cm is affected in my small bowel. They have placed me on steroids, 40mg of prednisone, slowly weaning myself off every 5 days. They want to see if this helps in any way, otherwise I am going back for another resect.

As I have never been on steroids before I have googled it (gotta love google), and of course have become rather overwhelmed by all the side effects etc. Now I know everyone is different and it effects people differently so I am keeping an open mind. However nowhere can I find how long will it take before any side effects or even when the drug will start to work. There are no changes with the pain yet and no side effects either Can any of you out there give me some sort of indication as to when they should be working... I know I have only been on them for 48 hours but I am impatient

Cheers

Kiwigal

 

[MapleLeafGirl]

HThey were unable to pass the scope into my small bowel because of the scar tissue and how narrow it was (they even tried the smallest scope they had), which brings a new meaning to tight ass!

LMFAO - That is classic!!

As to your questions about the pred, everyone is different. For me the effect of prednisone is almost instantaneous. I feel better that same day. For others it takes a week or so. I was worried about the side effects, but quite frankly they were worth it for me. No pain and diarrhea makes it easier to bear some weight gain, moon face, insomnia and moodiness. I have been on 40 mg for almost two weeks and the side effects are coming on full, but from previous experience, once I get down to 20 mg, these will start to go away.

Hopefully that helps!

 

[Sue-2009]

KIWI--OMG! U have a good sense of humor. We are all effected different by the "magic" prednisone. I agree with Kelly, by the time I start taking it...I really need it! So, its that classic saying---I need medication for the medication I'm taking! But, I NEED THE MEDICATION!!!! Good luck! Sue

 

[Crohn's 35]

:bigwave: Welcome to the forum Kiwi, and with an opener thread like that you will surely fit in here well!!

Ok, I have had resections too, two of them, and if there is scar tissue, nothing can stop that pain I know. But to relieve inflammation of fistulas or fissures Prednisone can help. Prednisone for me (as had taken it way too many times) at 40mg I was within a day or two. It works but, as you taper the symptoms can slowly come back. Which means you may have to rely on another way to control it, whether by LDN or medications. Scar tissue, built up in mine and the only way was a second resection. Make sure you are not infected if you have a second resection.

I had other girly things go on and anytime they even did laproscopic surgery I suffered terribly. I am glad you found us, so many people and wonderful information to help you get through your rough patches. Prednisone works, but I took them in the Am with food, and make sure you are on adequate doses of Calcium and Vitamin D3 with magnesium helps absorb better.

Welcome aboard, from the other side of the world!:smile:

 

[DustyKat]

Hi and :welcome: Kiwigal

Sorry can't help about the pred. Interesting about coming off the meds after 4 years. Roo is 4 years this month post resection and has been on a low dose of Imuran throughout that time and in remission. As far as I know there has been no talk of her going off meds, I'm more under the impression that they will continue with them indefinitely. Anyway, glad you found us and welcome aboard from Dusty, just across the ditch! :ybiggrin:

 

[Dexky]

Hi Kiwi and welcome, I enjoy the witt and stoicism that seems common with all the down-underers on here.

Our experience with EJ on pred was all positive minus the very temporary moon face and the longer lasting smart-assedness. It was all worth it as he felt better and had more energy during that time than he'd had in years.

Hope your experience is all good too!!! Good luck.

 

[reidyjo81]

Welcome !!!

Pred is never an easy drug to be on and it is my biggest enemy but it really does do the trick ! It takes about 4-5 days for me to really notice a different, if you are only on them short term then I only suffered with the insomnia and mood swings, but when on long term pred I had a lot of crap come with it but to be honest it is was worth it.

Keep positive, sounds like you are

Jo x

 

[Kiwigal]

Thanks everyone!

You all seem like a friendly bunch:thumright:

Thanks for the advice too. Think I may have had a small reaction last night but hopefully it is temporary. Couple of hours after taking my pills my whole body got sore - bit hard to explain, but if you imagine your body is bruised and you run your hand over it even gently it is sore. Didn't get much sleep last night, but will wait and see what happens tonight. I am guessing it is my body rebelling a little and if you knew me you would understand. I have woken up a little less sore this morning but it is still there.
Great to see there are some of my neighbours from across the ditch on here too!!

Cheers again for the advice:thumleft:

 

[Aura]

Hey Kiwigal

Or should I say Kia Ora. How's Auckland? Welcome to the forum. I'm from the Western Bay of Plenty. You've had a hell of ride with your diagnosis I hope you continue to get some clarity around everything and start finding a way forward. There are some good threads here on sleep and pain. It's great to meet another Kiwi. Do you follow rugby? If so go the AllBlacks for Saturday.
:sheep: :sheep: :sheep: :sheep: :sheep: :sheep: :sheep: :sheep: :sheep:

 

[Astra]

Hi Kiwigal
and welcome

Yes you're gonna enjoy it here!
When I read your story I thought poor sod, I know how she feels cos I was the same many years ago, and I ended up having a total hysterectomy cos of all the endos, best thing I've ever done, ever!
re the Pred, aw my favourite! love it - NOT!!!
Seriously tho, it saved my life 7 months ago and the relief was immediate! I loved the wizzy speedy feeling and the energy! I loved the way it made me eat tons and not having to disperse every 5 mins! I loved how it made me talk a glass eye to sleep and how my cheeks hurt like I'd been blowing balloons up all day!
I hated the insomnia, it was a killer, but I stopped fighting it and slept when I could, I hated the moon face but it's gone now!
You'll be ok, enjoy the relief, any side effects are a small price to pay for no pain and D!
glad you found us, lots of friends here for you
lotsa luv
Joan xxx

 

[Kiwigal]

Hey Aura! Great to see another Kiwi! Sorry not a rugby supporter - into fast cars instead! But I heard that they won!
Thanks Joan! Good to see that I am not alone in my pain - hehehe

Turns out the side effect was a flu coming on - but was amplified due to taking the steroids. So will se what eventuates. At this stage they aren't doing anything, the bowel pain is still there and appears to be increasing - still constipated off and on. So unfortunately for me it is looking more and more like scar tissue! Off to see my specialist next week so will keep ya posted - probably under another thread - if I can figure that out!

 

[Kiwigal]

So went to my specialist yesterday... am still weaning myself off the steroids... she is now referring me to the surgical team. It is looking more and more like scar tissue but she has now informed me that there is more narrowing further up to the left and now thinks that there is more than 20cm involved. :stinks:

I am feeling a little bit nervous about the whole idea of perhaps a bag being put in temporary after surgery as I was lucky to escape having one the first time round. Gotta love google... I had no idea what it involved or what they look like but now I do... maybe just a little too much information overload!!!

Not feeling too good today, have a feeling I have blockage. Have had constipation for about the last week, going only every 36 hours or so... which isn't normal for me! and have woken up with huge pain on the right again which of course always goes into my back and hip as well.

Oh well such is life! What is it they say... when life gives you lemons???... Add them to your vodka or throw them at the person with the voodoo doll!!:cheerss:

 

[Dexky]

Hi again Kiwi, I'm sorry you are going through so much. There are several on here with only good things to say about their ostomies especially Cindy (aka Nyx). JeffD is fairly new with his but I think he's beginning to come around with it. Then on the other hand there is poor Kello82 who has a skin condition around hers that gives her some serious challenges. Jeff and Kello both have threads about theirs that are pages and pages long. Let us know how it goes!!