Newly Diagnosed

Crohn's Disease Forum

Help Support Crohn's Disease Forum:

Joined
Sep 24, 2010
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137
Hy everyone, I'm new here, although I've been checking out posts since I was diagnosed around 7 weeks ago.

Basically, I've been having symptoms for at least 2 years, mostly D and a little pain in the lower right quadrant. I'd just come to feel like it was normal - I'm sure others of you know what I mean. I also had an anal fissure (which it took me about a year to admit to my doc), but that was treated with some cream/gel thing pretty easily.

Anyway, in Feb I went to Fiji, and after I came back had some more severe pain. Doc thought initially it might be Giardia (sp?), but tests proved negative. After a while when it was still bugging me, my doc suggested I see a GI. We all thought IBS would be most likely. Blood tests (while waiting for the colonoscopy results) showed that I have the gene for coeliac disease, and I really REALLY didn't want that - I am quite fond of gluten! Anyway, obviously the result was Crohn's. Granulomas in my terminal iliem plus a lot of scarring - so much so that he struggled to get in there at all. Even so, he said my symptoms are relatively mild.

So I started on Pentasa (with really no side effects, I was quite happy about that), but I saw him again this week after more blood tests and weekly B12 injections. Apparently the Pentasa just ain't working for me at all. I've been upgraded to Prednisone and Aza...(I can't remember how to spell the rest of it!) I was pretty upset about this, cause after reading this forum I knew I didn't want these drugs!!!

But, I guess I have to at least try them. I've been on them for only 3 days so far, and no side effects yet. Tho I was pretty cranky with hubby last night - whether that's cause of the drugs, cause I'm a little bit down or just cause he can be really annoying I'm not sure! I'm also having to take Vit D, calcium, iron and (something else, I can't remember just now), plus meds for high blood pressure, the pill, sleeping aids...so I feel like I'm rattling!!! Will go see my GP soon and see if I can't combine some of these.

But, on the plus side, I've been generally ok. We have toilets at work which practically nobody uses, so I can spend time down there without being embarrassed. I travel quite a bit (for leisure, not work), but I have noticed that a change of diet can make me feel a bit under the weather.

In the last few weeks, I've had a few cases of severe ab pain. Not sure if this is psycho-somatic or not, but it generally doesn't last too long (hit it with pain meds straight away!).

But oh my god, look how much I've written already! Anyway, this is me...I look forward to contributing more in the future, and giving and receiving support, and finding a way to take my frustrations out apart from my husband!!!

Thanks for listening!!!
 
Hi georgiegirl and :welcome:

Glad you found your way here. Sorry to hear the Pentasa wasn't working. Sounds like a good idea to have med review, did you see the post GutlessWonder made regarding IBD and the pill?...........................

http://www.crohnsforum.com/showthread.php?t=13212

I hope the Pred and Imuran take care of the abdo pain. There's heaps of support and info here for you so I hope you stick around. Good luck and welcome aboard! BTW I grew up in Sydney and Roo goes to uni there.

All the best, :)
Dusty
 
Thanks Dusty. Esp thanks for the link to IBD and the Pill! Something I will definitely bring up with the doc next time (that list is getting longer! he'll be cranky!!! lol)
 
Welcome Georgiegirl! Wow, another Aussie! I am baffled at the people that come from certain areas that are popular in this disease. This disease is not psychosomatic, even some dumb doctors can think that..been there done that. If your crohn's isnt under control with Pred or AZA perhaps you could look into Humira or Remicade. It could help you better. Good thing you are taking Calcium and Vitamin d. Most people lack Vitamin D and they find out later Crohns pops up, and take a test and are very low in Vitamin D. Prednisone robs your calcium in your bones and ant acids can too.

Hope you feel better soon!
 
Welcome georgiegirl
I too, recently joined. This place is wonderful, wish I would have found it years ago.

My husband can be very frustrating too. (Whose isn't??) Here I've been blaming the Pred. all this time, and all along it's real just his fault. hehehe!! Seriously, though, my husband has been a wonderful support with my CD. I don't know what I would do w/o him.

Nice to meet you.
 
Hi georgiegirl
and welcome

My Crohns is there too, and some days I'm crippled over with pain, and some days I get nothing! I'm back on the Pred for a bit, just to nip a current flare in touch before it escalated, think it worked! start tapering tomorrow! I feel ok.
I haven't noticed anything moody on Pred, in fact I'm high as a kite! Euphoric even! I love the jittery speedy feelings it gives me and the energy! But I'm weird, as you will soon find out, lol
It was the Azathioprine that damn well nearly killed me 5 years ago, I had an allergic reaction to it! But remember, everyone is unique with their Crohns, so don't read and compare side effects, and frighten yourself. Aza may be the 'one' for you, if you don't like it, come off it!
glad you found us, lots of friends here for you
lotsa luv
Joan xxx
 
I look forward to contributing more in the future, and giving and receiving support, and finding a way to take my frustrations out apart from my husband!!!

As a husband myself, I'm sure he will appreciate that:)!!!

Hi GG, welcome!! I hope the Aza works for you. If there are any side effects, they'll catch them early so don't worry too much. Good luck and stick around!!!
 
Welcome to the site Georgiegirl!
Yay, another Aussie! Haha.
Try not to stress about Azathioprine, I was on it for nearly a year and it gave me back my life and I had almost no side effects (the side effects I did have were the tiniest bit of nausea in the first few weeks I started taking it and I found I shed more hair than I normally do, which was fine because I have a lot of it :p)
Everyone here is always so happy to share their experiences and support. I hope you stick around :D
 
Thanks everyone for your support. It's more the Pred I have concerns about, but who knows, maybe I'll get no ill effects at all (particularly concerned about hair growth! I imagine this isn't the hair on your head!). I was telling my boss about some of them earlier this week, and he suggested I could get sponsorships for Mo-vember!!! (not sure whether this happens outside of Australia, but it's where men grow a moustache for the whole of November to raise money for prostate cancer) Well, at least we can laugh about it - I guess if you don't laugh, you'll cry!
 
Hi again GG!! When EJ was on pred., just a short 7-8 week taper, the only appearance symptom was the moon face. It did cause him to be a little spastic and a complete smart-ass. It really was a welcome change though, since he had been listless and in pain for most of 4 months prior to that.

I hate that kids ever have to take meds, but I'd say they are a true window for the effects of them since they really have no expectations going in. Good luck with it!!
 
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