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Crohn's Disease Forum » Your Story » Aussie, 21, diagnosed in Oct this year, struggling.


 
12-12-2014, 11:10 PM   #1
Malicious
 
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Aussie, 21, diagnosed in Oct this year, struggling.

Hi there!

I've been reading the forums since I was diagnosed in October but decided that today I would actually sign up and get involved myself.

I think what pushed me was being told I had to take prednisone the other day, and I've just started that. So to say I'm scared might be a bit of an understatement.

I was just wondering how everyone else deals with it? I mean, I cannot tell you how many outings I've said 'no' to, because I'm worried about an attack! :/ It's really putting a strain on my friendships and being so young, it's something I really worry about.

Also being a female and it being Summer in Australia, does anyone else wear tights or at the very least worry about wearing a dress?! I don't know, I think I'm dealing with it in the wrong way lol.

Anyway, sorry about the crazy long title. I tried to fit a much as I could! And really, I'm just here to say hi! And I'll probably be asking more questions than answering them for the time being!

It's also great to hear from people who are going through the same thing. IRL, there isn't many places I can go to!

Thanks for reading

Mal.
12-13-2014, 02:51 AM   #2
Catherine
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Hi Mal Welcome to the forum

I am the mum of a 19 year old girl dx with Crohn's as a 16 year old.

We are from outer Southeastern Melbourne.
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Catherine
Mother of Sarah dx aged 16, Jan 2012
DX - CD 1/12, asthma
Small bowel to small bowel fistula

Meds: ), azathioprine 200mg, Mesalazine 1.2g x 2, seretide 250 x 2 (asthma), ventolin (as needed)

Currently no supplements.

Has previously taken Multi B, Caltrate, B12 & Iron

Prednisolone (from 30 mg 01/02/2012 to 17/06/2012, 30mg 24/10/12-28/12/12, 50mg 24/1/13-27/4/13)
12-13-2014, 06:47 AM   #3
rollinstone
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Another Aussie ey, hello from Queensland!
Sorry to hear you're struggling ATM, try not to be too stressed, once things get under control and you get into a stable remission you won't be worrying about what to wear etc, being diagnosed so recently I imagine you're still quite unwell? Once you get your meds under control you will be feeling a lot better, this disease does suck but with the right treatment you will be back to the old you!

Onto a different topic, where abouts in aus are you?
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12-13-2014, 07:55 AM   #4
dave13
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Welcome Mal

Glad you decided to join the forum.Yeah,being diagnosed can be scary.You will be able to have a social life.Do your friends you like to hang out with know about your Crohn's Disease? Do you feel comfortable about telling them why you may be apprehensive about going out?

We may have to put a bit more thought into doing something,but it doesn't mean we can't do it.In my humble opinion.
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12-13-2014, 07:28 PM   #5
Malicious
 
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Hi Catherine!
Wow, diagnosed at 16? That would have been really tough. I couldn't imagine being diagnosed that young!

Hi rollinstone!
I'm from Canberra I'm actually not too bad at the moment. After September it quietened down for a bit which was good, but it's still a bit up in the air. My first major flare up started in June, but I wasn't diagnosed until October, which isn't too bad. I hope I won't be worrying about what to wear for too much longer! But I still think about it every time I go out. Just to be on the safe side.

Hi Dave!
Only my best friend knows. I haven't told anyone else, and I guess it's because I don't want to bog them down with it. I know it wouldn't change anything, but it's not exactly a topic you run around telling people
12-15-2014, 07:28 AM   #6
dave13
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I'm glad you can confide in your best friend. I agree with you,it is not something I go around telling people.I do let the people I am closest to know about my CD.I don't fill them in on all the details how CD affects me.They know there are times I won't be able take them up on an invitation,they may not know why specifically,but they know it is for a valid reason.


Good luck!
12-16-2014, 02:29 AM   #7
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Hi Malicious!

I'm a 21 yr old female from Sydney and as bad as it is, it's nice to have others alike that are going through the same thing. I only just got diagnosed in May this year.
Honestly this forum is so great, everyone is so lovely, supportive and educated about endless topics that come up day to day.
As someoen mentioned previously, telling other people is a personal preference but for myself, worked wonders. I tried to keep it fairly quiet as I didn't want the whole sympathy thing, though there'll be times where you'll need it.

At any time though, I'm more than happy to chat
How are you feeling since started Prednisone? I hope better!

Lara
12-16-2014, 06:07 AM   #8
Axelfl3333
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Welcome to club no one wants to join!the number one thing to remember even though it's early days for you is,it gets better and with minor and sometimes not so minor alterations to lifestyle you,ll be fine.there,s loads of things you do which help a lot keep a food diary and avoid triggers,exercise really helps if you feel well enough,stress is really bad for crohns so try not to worry as the worry makes it worse!i found that that being regimented with taking medication helped,if it's 9am for that pill it's always 9 am and long term I,m sure there will be an answer to crohns,there's a lot of money being flung at it world wide some will stick.good luck all the best
12-16-2014, 07:57 PM   #9
Malicious
 
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Hi Lara!
Yeah, I find I don't have anyone around me going through the same thing, and it's hard to talk to people about it who don't fully understand. They try to, which is great, but there's just so much stuff that goes through my mind about it, that it's hard to get my head around it all.
I'm actually finding that prednisone isn't working much :/ It's making me sick every morning without fail but today was only my 6th day of taking it, so maybe it hasn't kicked in yet. At least I've had no troubles sleeping! Ha ha.

Hi Axel!
Thank you for your advice. Problem is, is that I'm a natural, born worrier! I worry about things all the time and even though I know it makes it worse...that just makes me worry and stress more! It's a vicious cycle, unfortunately.
12-16-2014, 08:26 PM   #10
rollinstone
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I'm a worrier too hah, it's definitely counter productive, but as time goes on you'll worry less and once you get it under control you'll feel much more relaxed. Has your specialist got you starting any other meds soon?
12-17-2014, 06:42 PM   #11
Malicious
 
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Hi Rollinstone,
I don't think I'll ever be able to worry less lol. It's in my genes! No, they haven't got me on anything else. I take stuff for a reflux thing, but it's not really related I don't think. I've been taking that for about a month.
12-17-2014, 10:04 PM   #12
Catherine
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Paging DustyKat, for advise because I believe there should be a maintenance medication.

Prednisone is good at getting people in to remission, but it doesn't keep them there.

Last edited by Catherine; 12-18-2014 at 02:30 AM.
12-17-2014, 10:22 PM   #13
rollinstone
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Yep was just gonna mention maintenance medication, has your GI doc talked to you about that yet?
12-19-2014, 01:13 AM   #14
Malicious
 
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No, there hasn't been any talk about other medication. I'm taking prednisone until I see him in February and that's when we'll talk about it, I'm guessing. But I'm finding this stuff is making me worse. Maybe it just hasn't kicked in yet, I'm not sure.

I'm so annoyed, the other day I was feeling bad but I put it down to stress. I managed to go out and do the things I needed to and I was fine.
Then last night I was feeling truly awful and it's continued all day. I had to call in sick for work and everything. And I've been in bed all day sick. Like, really sick. I just don't get how I can go up and down like that.
And I'm going down the coast soon and instead of being excited, I'm worried about the car trip.

Sorry, needed to rant
12-19-2014, 02:22 AM   #15
DustyKat
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Hi Malicious and

I am so very sorry to hear of your diagnosis and what you are experiencing.

I am a Mum of two kids with Crohnís, diagnosed at 14 years and 17 years, and we live up on the Northern Tablelands.

Where is your Crohnís located?

What would normally happen when you are given Prednisone is you are also started on something like Imuran. How this works is the Prednisone is designed/supposed to hit the inflammation hard and fast at the outset and induce remission. The downfall with the Pred is that it is not meant to be a long term drug and so shouldnít be used as a maintenance medication. Now, the issue with Imuran is that it takes about 3-6 months to reach full therapeutic levels and Prednisone is a drug that needs to be tapered so a course is about 8-12 weeks. That is how the two complement each other, as one is finishing the other is ready step in and take over.

Dusty. xxx
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12-21-2014, 12:49 AM   #16
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Wow! Other Aussies on the same page! I don't know about Crohn's being connected to an autoimmune condition, but Typhlis definitely is.

Where in Australia are the Typhlitis's located?

Also, don't forget the gasto stop for the runs

Feeling bad? Ohhhh do I know it! Lots of appointments cancelled last minute, travel plans cancelled, and the bed is beckoning to you because that is as far as you can get. Holding something against the lower abdomen right side, hoping the pressure will relieve the pain! Doesn't work. Okay have to admit to the pain pills. Tremedol, still no relief. Okay, Jurnista 8mgs and a bit of relief, but eliminates driving. Also, seams appear to be crocked when trying to sew. Recipes do not quite come out like the picture, But the pain is at a minimum! Taking medication as indicated by the doctor, specialist 2 hours away. Local GP admits to knowing nothing about the condition. So, a lot of faith, prayer, hope and good husband help to keep somewhat of a balance in the house. So what if the floors need a vacumn, dishes washed once a day, laundry once a week, who cares? I do of course but this is a whole new life style for me. Glad to have a good husband, a good doctor 2 hours away, as long as I get some pain relief. That is the best of all! Good luck to all those suffering, we know it is not fun! Wonder if any doctors have had Crohn's or Typhlitis? would BE GREAT TO HEAR FROM THEM.
12-21-2014, 07:53 AM   #17
Susan2
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Hi Malicious

Another Aussie here - I'm from the coast of Victoria, out of Geelong. I started having symptoms of Crohn's in my teens and am now 71, so have lived with it for a long time and through many different stages.

The great thing about this Forum is that you can talk about those things that are hard to talk about with people who haven't experienced what you are going through. And you can call on the knowledge and experience of those who have gone before.
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12-21-2014, 09:32 AM   #18
nova
 
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Hi Malicious
This is my first time posting too eeek!
I'm 19 and like you was diagnosed in October too but have been on Prednisone since then, 40 mg first and now I'm tapering, currently at 15 mg, honestly don't be scared of it, I went from being in horrid pain and totes terrified of leaving the house incase I had to go to the bathroom, to now being pain free (so far) and now able to do normal things thanks to the Pred! yay for medicine!
12-21-2014, 11:53 AM   #19
wellen1981
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Well done for joining OP and nova - i spent about 2 weeks lurking on this forum before i had the guts to join and it really is a good place to utilise if nothing else for sanity reasons.
It really is mind boggling when you are none the wiser to the condition and this forum has heaps of people who 'get it' and tons of collective knowledge.

The best start i had was just being very nosey at everyones My Story threads.
It just gives you that overall clarity on how the condition affects everyone and it makes you realise that we all have to deal with exactly the same problems the condition causes on a quality of life level - I can honestly say that I also feel nervous about going out like I used to be able to for fear of my condition causing me problems while out. Many others are the same but some on here manage to push themselves and work around it with success.

It is those kind of stories that will keep the worriers like us sane and inspire us to not give up so easily and to try not to worry too much but just do what you can when you can.

I honestly envy every one of you Crohnies in Oz as you couldnt live in a better spot on the planet - Professor Tom Borody is leading the way in Western Medicine regarding understanding the condition and it seems that all western medical eyes are watching his work to gain more understanding into how the condition can be dealt with.

Wish i lived in Oz with this condition.
12-21-2014, 07:42 PM   #20
Malicious
 
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Hi Dusty!
I'm taking the prednisone until I see the specialist again, and then we'll talk about what medication I have to be on, I suppose. Thank you for your insight, I didn't know that's how it all worked but I knew I can't be on prednisone forever. Not that it's doing anything lol.

Is it unusual for it to be taking so long to kick in? I've been on it for a week and 3 days but I don't think it's working. That or my worry is making things worse.

Hi Susan!
Thank you, and I'll definitely be around the forums to chat. I'm learning a lot. And the support has been great.

Hi Nova!
I'm glad to hear that you're feeling better I started on 25 and I'm down to 20, but I'm finding it's not working for me :/ I'm not sure if it's just taking it's time lol. How long were you on prednisone before it started working for you? (though I realise that every body is different).
Ha ha, I'm still scared of leaving the house. Which is terrifying, but I'm sure things will improve.
12-21-2014, 09:12 PM   #21
Catherine
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I would be trying to contact your specialist as prednisone should have started to work by now. The dose rate may not have been high enough.
12-21-2014, 10:08 PM   #22
lacey2
 
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Hi Malicious
Have you tried GASTRO STOP? It stops the runs and loose stools. You get bananas instead.

Also, I would not wait until Feb to get answers. Now days most doctors provide their e-mail address and you can write to him for suggestions. Sometimes it works, but, I'm having difficulty to get responses lately. Too busy..

Although my condition is different from yours, it is similar in all the pain issues and diarrhoea conditions, it was not the prednisone that helped me it was the oral chemo drug that reduced the pain considerably. Except lately pain is returning more frequently, whereby I was able to go a week at a time without pain, then even 10 days, but recently it has returned and the battle is on, but, luckily the diarrhoea is not there. Take care, good luck.
12-22-2014, 05:24 AM   #23
DustyKat
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I agree with contacting the specialist to let them know that you arenít seeing any improvement in your symptoms.

Prednisone is like any other drug in that people respond differently but most do see improvement quite quickly with Pred especially if it is the first time you have you taken it. That said I donít think my son responded that well to Pred. Itís not that I think it didnít work him just that it wasn't a magical drug for him, that said I do think it helped stabilise him though.

What dose are you on?

Dusty. xxx
12-22-2014, 06:58 AM   #24
Malicious
 
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Thank you for your advice everyone.

My specialist is actually on holiday right now. How dare he! Lol. And I won't be able to contact him till mid Jan. But I'm happy to just to take the dose they described - I'm going down by 5 mg every week so I'll see what happens. The dose may not have been high enough, but I'm not sure. I'm currently on 20 mg, I started on 25. But it made me so nauseous that they told me to cut it down.
12-22-2014, 07:15 AM   #25
Susan2
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25mg is not very high, especially if the Crohn's is very active and has been so for some time. The aim is to hit the inflammation hard so that any subsequent medication has more chance of controlling the symptoms.
12-22-2014, 02:13 PM   #26
DustyKat
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As Susan has said, 25mg is not very high to be starting out on, 40mg would be a normal staring point and for some it goes up 60mg.

Prednisone can be tough on the stomach. Did the doc prescribe a PPI (Proton Pump Inhibitor) along with it? A PPI is normally used to reduce stomach acid and so treat reflux and stomach ulcers. GIís often prescribe a PPI along with Pred to reduce/prevent the GI side effects of the drug.

And yes, sucky time of year in all ways to get sick but made worse by the fact that most everyone shuts down for the break. *sigh*

Thinking of you.

Dusty. xxx
12-22-2014, 05:38 PM   #27
nova
 
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@Malicious Thank u! It was like towards the end of the first week I noticed some normality returning, hmm your dose seems quite low I think, I'm guessing that's maybe why you've not really noticed any improvement (although I'm by no means a doctor lmao so don't take my word for it) but tell your doctor and he/she will probably give you a higher dose or try something else.
Even if pred doesn't work for you, something will and you'll be fab in no time!
12-22-2014, 06:56 PM   #28
lacey2
 
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Dear Malicious
As well as working with the specialist, try to have a closer relationship with local GP. Why? I found they fill in the gaps for information and for medication. He can prescribe something for the stomach, and yes something for the nausea.

My specialist has put me onto a nightime stomach medication, also, cortisone 5 mg as a matience medication, including the chemo-drug. I have a feeling something will have to change as meds are not working right now. When I last saw him 3 weeks ago, he said he hoped I had gone into remission. Except the pain has returned like a giant tsunami! Like a few days after I saw him.

Luckly (?) he perscrided additional pain medication, so, now I have about five backup pain meds should I need them?! But, common sense prevails, and I realise that I must start my day with a low dose of pain medication. After yesterday, and the ride I was on, the roller coaster started out with a vengeance, so, pain meds with the morning coffee!

That is chronic inflammatory typhlitis which I'm being treated for.

I'm open to suggestions, even other doctors names in my area just to ensure we are on the right track. I believe it is called "second opinion", except I don't want to offend the treating specialist.

Many thanks to those who are listening to me rant and rave about this condition.
12-26-2014, 04:28 AM   #29
Malicious
 
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Hi Guys, and Merry Christmas to everyone!

@Dusty - I did have a reflux thing that he said would help but that was the stuff I stopped taking because it made me feel worse.

@nova - thank you! I'm sure something will work eventually. I'm on holidays at the moment and seem to be doing well, so maybe I just need to constantly be on holidays!

Hi Lacey!
I hope you're feeling better and that something will work out for you soon. and don't ever hesitate to get a second opinion on anything. It's you're body and you're entitled to!

I hope everyone had a lovely Christmas and are happy and healthy everywhere.
12-26-2014, 08:14 PM   #30
lacey2
 
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Hi everyone.
No pain for a few days, which is great. Taking med as prescribed, except no pain meds!:

Chem medication last night, so will wait for continued response. Except I feel cold and shivery in the heat!

Okay if I seek another opinion from another specialist except does it offend the treating doctor? Doesn't he just forward all his reports to new doctor? Saw 7 specialists before this one, and waited about 4 years of various meds until we went on the chemo finally no more pain! So, I think I will sit back for a while and see how it goes.

Have a blessed year everyone and may it be pain free and be fruitful in all your endeavours!
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