Introducing......

[shazamataz]

Hi all,

I've been lurking here for about 3 weeks now and thought it was time I introduced myself, since I know so much about a lot of you!

My name is Sharon, 38, live in New Zealand (it's beside Australia for the uninitiated) and was diagnosed with Crohn's about a month ago.

I've had 'Chronic Fatigue Syndrome' for about 12 years after a nasty bout of glandular fever (mono to the Americans) and since about 7 years ago have had 'Irritable Bowel' which basically involved a bout of pains, cramps and D about once every 3 or 4 weeks or so, always after eating dinner (could each of these be labelled a 'flare'?), but never found anything specific which caused it foodwise. I am pretty sure these bouts were all stress-induced, but one can never be sure. Otherwise I felt things were fairly normal apart from 'urgency' and a little cramping now and then with my morning poo.

Anyway, for most of this year I have been dragging my feet a lot more than usual. I only work part time as I have for years, but also study as well (training to be a massage/bodywork therapist), but even this was a struggle, just so tired. No D though - seemed I felt more blocked up than usual which I've never had before.

Coupla months back I started getting quite constant lower abdominal pain and tightness and was having trouble going much at all. This worsened into two-three weeks of fevers, regular stabbing pains, night sweats (at least 2 x a night I had to get changed) and a constant ache across my lower back/hips. I saw a specialist who said he thought it was diverticular disease and referred me for a scan (4 week wait) and sent me home.

A couple, of days later I thought 'Bugger this!' and took myself off to the emergency room - I still can't believe the guy sent me home with all he heard and saw in my blood tests! I spent 10 days in hospital and lots of tests and it was discovered that I have about 20 cm of Crohns in my ileum, some degree of stricture and also had an associated abscess in my pelvis - nasty! Funny, when I asked after a couple of days if I could leave for a couple of hours to go home and visit my cat and pack a few things, the same doc who sent me home the week before said 'No, I don't think you realise how very sick you are.' I wanted to slap him!

Antibiotics seem to have cleared the infection and I am now on the Dreaded Pred and mostly doing pretty good.

Pooping regularly and eating again (I lost nearly 6 kg and I was only 54 to begin with!) and, while I have been feeling really positive about the whole thing most of the time, am also a bit overwhelmed by having a pretty much permanent disease. It is good to have an answer to the fatigue issue (seems to be very common here) and I plan to be assertive in taking care of myself, but there is just so much information!!

Also, I understand people come here for support and so the forums are likely dominated by people in their 'unwell' stages as opposed to when they are doing good, but, while I have found all your information interesting, the yucky stories have started to get me down a bit.

For instance, I have never had any issues with D 'accidents' or anything, and now I have that concern in the back of my mind. I don;t want to be worrying about that all the time - especially since I haven;t had D more than once in about 6 months!

So, I guess what I am looking for here is some GOOD news. I understand there are varying degrees of Crohns and am hoping I am at the lesser end (apparantly what is there is 'moderate') and can get it into control and try to lead a normal as possible life without having to take nasty medications - I'd prefer the more natural route and have already added a number of things to my arsenal. Is this something which progresses and naturally always gets worse?

The Pred seems to be dong the trick, though i still have some tightness, the odd cramp and a bit of that back pain now and then. I wonder if this is normal too?

Anyway I have rambled on long enough. I hope to hear some good stories which might be beneficial to all of us. I am back at work and study and finding it all okay apart from the exhaustion which I feel is because the Pred won't let me rest at all!

But just to end with a bit of humour, after reading all of your D stories the phrase that keeps coming to my mind is:

'Never trust a fart' :lol:

Perhaps that could be the catchphrase for IBD?

Thanks for all your stories which I have enjoyed (mostly) reading.

Sharon

 

[Nancy Lee]

Hello Sharon!

Right now I just want to welcome you to the Crohn's Forum,
and let you know there are plenty of us here who feel pretty darn good!

It's a great place to come for support, or just to vent,
and you'll find a ton of information in the different forums.

Once again welcome!

Healing Hugs~Nancy

 

[D Bergy]

Welcome to the forum.

You are correct that most of these health related forums are dominated by people who are not where they would like to be health wise. But, on the other hand, that means there are a pile of people who are doing fine. They just are not here.

I had my reckoning a couple of years ago, and had a stricture removed after I lost 40 lbs in a short while.

I found a treatment I was comfortable with, and I am actually better than I have been in years, because in my experimentation, I actually found out how to eliminate my depression, purely by accident. This was a bigger problem than my Crohn's although they are closely related.

I am probably as normal as anyone now, and no one would suspect I have Crohn's.

So it is possible to improve to one degree or another. No one knows ahead of time what the future holds for them, and I may not stay in this condition, but I am happy to be where I am at right now. I am controlling the disease, not the other way around.

New Zealand is a beautiful country, and I hope to see it one day. I have a hard time getting anywhere that my pick-up truck can't take me.

Dan

 

[farm]

:welcome:

 

[imisspopcorn]

Thankful

Welcome. I am new here as well but have had the disease for about 11years. We all have good days and bad days. I think there is a "mourning" period when people are first diagnosed with a chronic condition. It can be overwhelming and depressing. I count my blessings that I don't have something as lethal such as cancer and go on from there...This forum is great in that you feel you're not alone. I hope you have a fast remission. Maybe a thread about things to be thankful for would be a great start? I'm thankful for baby wipes and A&D ointment:ylol2:

 

[forum contributor]

Maybe a thread about things to be thankful for would be a great start? I'm thankful for baby wipes and A&D ointment:ylol2:

Great idea. I don't know if anyone has made one, so before I do, I'll check.

 

[schulzy]

Hey welcome im also new, hang in there the good will come, im currently in a good chapter of my crohns and plan for it to stay that way.
My best advice, eat healthy, avoid as much as you can, anything with chemicals.(basically everything these days).

 

[AmandaC]

Hi! I also wanted to say welcome. I had the same experience when I first joined the forum. I went to look for some info on small bowel series and got totally freaked out by all the horror stories, only to find that it wasn't as bad as I thought it would be.

I've really appreciated the support I've received here over the past year since being diagnosed with CD. Although I'm not completely out of the woods I am feeling much better at the moment. It's really difficult at times but I think you just have to take each day as it comes and appreciate the good times.

Good luck and I hope you stay well!

 

[Christiebird]

Hey there

Im new too and whilst there are a lot of deep stories on the forum you will also find so many things to make you laugh, advice and plenty of good news too. I had my first bowel resection 6 weeks ago - about 30cm and for the first 3 weeks totally regretted the surgery but having seen the dietician im slowly but surely getting better - all I can say is avoid what you know you can't take and stay calm, don't allow stress in your life and if you don't feel well - say so, don't sit and suffer. Anyway, welcome and happy reading of lots of possitive threads.

K x

 

[CentaurCEO]

New to the site but not to Crohn's

Hello everyone my name is Justin Davis and I was diagnosed the day before my birthday June 6, 2005. I've been in a constant BATTLE with the disease since 2003. I'm here because I really need to have dialogue with others with Crohn's so I can have a better game plan to put it in remission and live a semi-normal life.

 

[shazamataz]

Thanks everyone.

I hope I didn't sound like I was complaining about all the stories of 'nasty' experiences!

I've found a ot of realy useful information here and also laughed at a few stories. :lol:

However, I have also found myself getting a bit freaked out. Not just by reading here, though, but in general. I never thought I'd be paying so much attention to my trips to the toilet and what does or doesn't come out!

I think all of my obsessing has lead to me feeling some more pain and tightness again and being unable to go for a day really freaked me. Keep thinking my abscess is going to come back. Hard part is this is something you can't SEE, so you don't know what is going on. Plus, for me, the gastro team are imPOSSIble to deal with and so if I have any problems I will have to go right through the waiting in line at the emergency department thing again.

How does one decide when it's bad enough? I've had back pain and tummy tightness for 2 days. Had trouble 'going' yesterday. A wee bit of D this morning for the first time since coming home from hosp 3 1/2 weeks ago and being on Pred (was in for being blocked as opposed to the other way around - have a stricture). Did take some laxative syrup last night though. Have no fever like I had before. But just had a nap and woke up very sweaty, like a night sweat.

Though I did start to taper the Pred on Friday (40-35). Was sposed to go down ten but after reading here decided to go down 5 for a few days first. Feel less wired up actually, but perhaps it has affected me otherwise as well?

Sounds like I am not experiencing anyhting like as bad as a lot of you are or have, but I would like to keep it that way - as in get things taken care of before they do get really bad.

Don;t want to be missing any more work or letting people down with other things. I am photographing 3 weddings in Oct-Nov and am sposed to have tapered off the Pred by then - bit nervous about that as they are relying on me PLUS I need the cash.

I am rambling as a bit concerned. Sure you can all relate. Any tips much welcomed.

Shaz

 

[fenway1971]

Hi Shaz,
First, welcome! Love your humor.

To your many questions, start by not obsessing. Obsessing leads to stress which seems to trigger flares in most folks. I think nutrition and diet play a huge role and have found that changes I've made in diet have led to an enormous improvement in symptoms. I was in worst flare last summer and now consider myself under control. As silly as it sounds, keep a food diary so that you can track which foods cause good and bad poops or pain. I also find that the way food is prepared also matters.

I also have found that natural supplements like Vit D, multivitamin and turmeric work well for me. I was on pred like you and transitioned to 6mp which works for me. But, I believe my diet changes helped a lot.

Good luck - poke around and don't get depressed on this site. Great folks and you'll read about success stories. In fact, maybe we should have a success stories section!

 

[shazamataz]

Thanks Fen

yes a Success section would be great!

Actually I am fine now. I think I just got a bit concerned and made things worse when there really wasn't anything wrong at all. I am indeed a form believer that what we think and feel has a HUGE effect on our bodies, to the point that I reckon that most of my Crohns and partiocularly the abscess has happened because of unexpressed/undealt with emotional stuff.

It's hard to judge with the food thing at present because I have never had any specific triggers before diagnosis and now that I am on Pred, doesn't that mask it all anyway?

Anyhoo, I am feeling very optimistic now -we are all allowed a wee dark patch occasionally - and yes have made many changes/additions (see my updated signiture). Now just have to tackle the darned smoking which is a mountain I don;t want to face but know I simply HAVE to.

Yay, feeling good today

Shaz :Flower:

 

[My Butt Hurts]

Hey Shaz - Welcome to the forum!

 

[gibby]

Hey welcome! Thought i would return the greeting! Loving New Zealand, must take a wee trip down to Dunedin before i head away home, see all the Scottish heritage before i leave.
Being newly diagnosed when you are an adult must be difficult, i have had this since i was 8 so its kinda always been me, cant remember really not having it. So the big change in lifestyle or thinking never happened. Just always gone with the flow i suppose, never thinking i am as bad as i am! Everyone asks about food etc when i tell them i have UC, to be honest i find diet is not a huge factor, i get awful cramps after eating soft or strong cheeses, or cheap cheese slices in McDonalds burgers, but it has always been stress for me i think, and times of the year, usually april and october without fail. Havent had the prednisolone munchies for a wee while which is a relief, managed to stay away from that alot more since i got put on to azathioprine, but yeah they were always mean!
Hope you get some answers from here, i used to visit a forum back in the UK, but this one has alot more to it! I'm really appreciating everyones stories, especially when i am in a foreign country and having meds issues etc of my own, its good to vent with people who understand you!
Catch up with you soon x

Gibby x

 

[Lisa5326]

Welcome Shaz!!