Please allow me to introduce myself

[KaraLynn]

Hello. My name is Kara and I was diagnosed with Chrons last week after having my first colonoscopy and upper endiscopy. I haven't started any treatment yet as the GI Dr. is out of the country for two weeks and the pharmacist couldn't understand his writing. I'm a bit of a schleprock so that's not totally unusual.

Anyway...about a year ago I went to my primary care physician complaining of irregularity, painful joints, and extreme mood swings and just...just...I didn't know how to explain it. I just felt crappy (I'm glad I can make punnies you'll all understand). He gave me a fact sheet on IBS. I went home and cried. I was so tired of hearing it's you, it's stress, it's your diet...blah blah.

A month later I found I was pregnant, so I just blew it all off. Three months into my pregnancy I was completely constipated going 5 days or more without a bowl movement and then when I finally did I would have terrible diarrhea and there was always blood. I diagnosed myself ...its normal, it’s the iron in the prenatal vitamins, I’ve got hemorrhoids this is all normal. Then as with all my pregnancies, I was diagnosed with gestational diabetes which meant I was on the highest fiber, whole grain, red meat, spinach etc. diet you can imagine (which by the way is how I actually like and prefer to eat) and the bleeding got worse. Sometimes…it would be pure blood no stool at all. Then the mucus came…YUCK. I was scared out of my mind. I was in pain all the time not just in my gut but my knees, my knuckles and my shoulders. but I honestly thought it was all pregnancy related. But when I gave birth (back in July) it didn’t get better it got so much worse. So much more worse that there are days now where I can hardly walk, my legs give out on me and I haven’t had a regular bm in months.

I have so many questions about the way I feel some days. Is it normal? Is it related? I’ve been afraid to ask anyone especially since I haven’t seen the Dr. since my diagnosis (he gave it to me over the phone because he’s out of the country for the next two weeks.) Anyway, I’m so glad I found this forum and I look forward to fostering great friendships and finding the peace amongst those who share in my experiences.

 

[jed]

and another new member, go crohns! welcome!!

(just about to leave work, will give more of a welcome a bit later)

Jed

 

[soupdragon69]

Hi there Kara,

A big big welcome to you!!

You have coped extremely well with your last pregnancy and like many of us here have really been through the mill with being told its IBS, all in your head etc etc.

You have a diagnosis now and have a treatment plan that will start (albeit delayed badly due to typical medic writing!).

You sound like you already try hard to look after yourself on the diet front and its very important to listen to your body in relation to food. See if you can have a dietitian who specialises in IBD to give you some basic info to start with. They usually are around in clinic and shouldnt take them too much to refer you across. You will find everyone is different on the diet front Kara so what works for one may not work for another. Very much trial and error there.

When you get more info about where your crohns is and how severe it is then you can plan better in relation to other info you want and directions to go in.

This time can be a bit of limbo period so hang in there things will improve ok?

A good site my gastro team started here in the UK does give some decent basics that might help you to start with www.crohns.org.uk

You will also have the CCFA I believe in the US and NACC here in the UK so take your pick.

This forum is a great place to be as we all rebound off each other in our good and bad days and accept its a tough disease to deal with.

Never be afraid to post no matter how you are. We will always listen and support any way we can.

Well done for your first post. Welcome again. Looking forward to seeing you around!!

((hugs))

 

[KaraLynn]

Thank you Jan. I've been pouring over the threads tonight soaking up every bit of frustration, elation, advice etc. It's so much to take in! I have been doing research and am anxious to have more 'face' time the Dr when he returns but being anxious only means that I'll fuel my anxiety so in the mean time I'll try to pace myself with questions for members here. HA!

 

[soupdragon69]

Bring it on we understand how you feel! LOL

 

[jed]

I've been pouring over the threads tonight soaking up every bit of frustration, elation, advice etc. It's so much to take in!

the night i joined, i had just googled crohns forums to see what came up.

found this somewhere in the google answers

somewhere in here, there is a ppost between two people that were going thru hell with their crohns, and also the war around them

i think one of the guys was from israel, and the other was from iran, and this was posted back last year when tensions were high between the two countrys (higher than usual anyway).

whilst it made a tear crop up in my eye, it was one of the most amazing little things i've ever read on a forum. two people that just wanted a bit of medical help while the world around them crumbled. i had to join straight away

its a great website, and an amazing community. so go ahead and ask as many questions as you want. you'll find all the help in the world here.

 

[CookieCat]

Hi Kara, I am only new here too and quite newly diagnosed with Crohns since the beginning of this year, but I just wanted to say welcome. I've found this site so great it's really helped me as I'm going through a rough patch at the moment (I am in hospital).

Its fantastic to be able to talk to others who really do know how I am feeling and can relate and even make jokes about this crappy disease. You will work out what's normal and what's related to your crohn's in time. From what I've seen everyone is an individual in this disease, but you will get to know yourself.

One thing I can say is that although the diagnosis was a shock to me it was also like solving a mystery. So many 'oh no wonder!' thoughts came to me when I looked back on things in hindsight. I also try to see it in a positive way that at least I know what is wrong with me now and there are ways of treating it. And remission is possible!

I hope things get better for you soon Kara. Keep your chin up.

Cookie

 

[My Butt Hurts]

Hey Kara! Welcome!
At least you have a diagnosis now, and can start the road to remission. Hopefully it will come easy and quickly for you. Congrats on your new little one too! You'll find a lot of good advice here and support too so welcome again.

 

[GoJohnnyGo]

Welcome aboard Kara.

You've found yourself a supportive community here, hope you can share your Crohn's journey with us.

 

[soupdragon69]

Johnny,

Thats a really nice way to put it. "Sharing a journey"

Made me think that has...

 

[kromom1]

Welcome Kara! I am fairly new to this, too, and have found great information and support here. I sure hope you can get some relief soon!

Lisa

 

[KaraLynn]

the night i joined, i had just googled crohns forums to see what came up.

found this somewhere in the google answers

somewhere in here, there is a ppost between two people that were going thru hell with their crohns, and also the war around them

i think one of the guys was from israel, and the other was from iran, and this was posted back last year when tensions were high between the two countrys (higher than usual anyway).

whilst it made a tear crop up in my eye, it was one of the most amazing little things i've ever read on a forum. two people that just wanted a bit of medical help while the world around them crumbled. i had to join straight away

its a great website, and an amazing community. so go ahead and ask as many questions as you want. you'll find all the help in the world here.

That's a pretty powerful testimonial, Jed.

 

[teamgo]

Welcome Kara! I am new too. I hope you get some relief once you get your rx filled -- is it possible the doc's office can decipher his writing so you don't have to wait 2 weeks? Good luck!

 

[jed]

That's a pretty powerful testimonial, Jed.

i'll try find it and link to it.
lol, it'll give me something to do at work

(or if someone else remembers the names if the two guys let me know)

 

[KaraLynn]

Welcome Kara, is there anyone else at his office? Making you wait two weeks is ridiculous. There should be an on call doc or nurse or someone who can decipher his RX. Good luck and keep us posted. - Mike

They did decipher it thank goodness. I will pick up the prescription tonight. I guess it's a [FONT=verdana,arial,helvetica,sans-serif]5-ASA[/FONT] enema of some kind? I think Rowa, Rosswa ... something like that? Forgive me the woman on the phone today had such an awful thick accent that I had already asked her to say it three times and was embarrassed to keep asking. (yes actually I AM a dork! )

Do you think I should push to get an appointment with the PA in his office?
Or...Should I just do this enema thing and wait patiently. I mean it's been a year since I've had any sense of normalcy what's another two weeks?

I just have so many questions to ask.

I want to ask about the emotional stress issues (such irritability, sudden bouts of depression that go away as fast as they came, and what about those wonderful anxiety attacks that come out of nowhere oh oh or even the bouts of totally random rage that scare the hell out of (why am I so angry?) that started about two years ago well before I was diagnosed so I can't blame it on the shock of being diagnosed. Is this normal? Do you all have these problems or am I just a total flipping basket case?

I have read that join pain is linked but I want to know if the fact that my knees and legs just 'ache' constantly and suddenly give out when I'm walking is related and if so treatable separately or does the treatment for the Chrons take care of it?

And is the chronic pain I have in my neck and shoulders is related? And if I can't take the 600 mg of Advil I have been taking for the past few months for the pain...what can I take? Heating pads don't flipping work.

Wow... I think I typed that in like 100 wpm. I didn't realize I had so much frustration and worry pent up. LOL

Yeah for total strangers on the www that will read your most intimate secrets and care enough to relate.

:ytongue:

 

[soupdragon69]

Having Crohns is a huge emotional rollercoaster Kara..

You will see posts from many of us that just have days were we cannot seem to lift our heads up emotionally but with the help of everyone here, their care and support you do.

Anger and frustration at your body giving out when you feel you "should" be perfectly capable is a totally reasonable feeling.

The general aches and pains go hand in hand with exhaustion from nutrient depletion. Alot of our vitamins and minerals have an impact on our mental and emotional health too not just the physical. I recently posted in the treatment section about Vit D because I have been found to be deficient. Some like vitamin D are also what is known as "pre hormones" so they impact on us that way too.

Alot of folk become anaemic too and that as you know can drain you. The drug you mentioned does sound like the 5 ASA Rowesa and as an enema it will work directly on the affected area to calm things down, reduce inflammation and as a result allow for proper absorption - thats the aim. Just take it one step at a time and if it doesnt work there are other options.

When you do see a doc again go through with them about the LEVEL of pain and where it is. Dont just put up with it because it wastes precious energy that could be used for other things in your day!

One of the gastro nurses I talk to did a poster this summer all about continuing pain in Crohns patients and how difficult it can be to control and its also an under recognised thing. She did the poster for an IBD conference in Belgium and had a massive response even though she was terrified beforehand.

So you can see you are definately not alone with the feelings you have and why.

Due to your Crohns you have probably been nutrient deficient for some considerable time so the feelings you have along with the not understanding why are converted into the worry of loss of control and frustration. Add the stress of finding or getting to a loo on time and the pain associated with that and hey presto flashes of anger and moodiness.

Now you know why the frustration will be getting it all under control so you can life your life! LOL

You will get there Kara. Keep on asking - after all thats what we are all here for.

Thinking of you.

 

[jed]

i keep seeing this thread and get reminded of wile e coyote.

allow me to introduce myself, my name is wile e coyote, genius.

 

[KaraLynn]

Jan,

You are kind and very inspiring. I read your laundry list of ailments in another thread and bless you lady...you are amazing seem to have such high spirits. You definately have a wealth of knowledge and I think it's awesome that you devote so much time to sharing it with people like me!

Thank you.

 

[KaraLynn]

i keep seeing this thread and get reminded of wile e coyote.

allow me to introduce myself, my name is wile e coyote, genius.

Ha ha...I was actually thinking of the Stones song when I posted it. I'm a big music lover. All kinds of music from punk to jazz and everything else in between.

 

[soupdragon69]

Kara,

Being Irish I am just blessed with the gift of the gab! ;-)

Keep posting! Hope you are starting to feel more at home and getting your head around why you feel as you do and its ok to feel like that.

You are right about my laundry list and it made me laugh when you said it. I am a bit like a magnet in relation to health problems and my friends keep me going all the time about it saying ok what have you got now then that we need to read up on! LOL

Hang in there you will will feel much better down the road trust me.

((hugs))

 

[kello82]

hello Kara!
i am new to the forum but definitly not new to crohns, i was diagnosed at age 8 here i am 10 years later!
i also was put on to the 5 ASA Rowasa for a time, it was a long time ago, a bit hard for me to remember whether they helped me, but good luck! you get used to the idea of enemas lol
and the joint pain, oh boy. that is something i am new to. i just started experiencing joint problems within the past month, and i totally feel your pain sista. my ankles are the worst, but definitly the rest of my legs are always aching and my knees and ankles and hands swell up when its worst. sometimes im afraid that i will need someone to carry me! my doc put me on celebrex and i think its helping, though its early to tell. talk to your doc about it and see if theres anything to help that.
good luck with everything

 

[Guest]

hi Kara & welcome

hehe if you're a dork and i'm a dingbat, we should get on really well!!

sorry you've had to struggle so hard with the symptoms, particularly throughout the pregnancy i have heard people say their Crohns was massively affected through and after pregnancy.

good luck with the meds - i hope they calm things down quickly and successfully. looking forward to seeing you around the forum

 

[catfud]

Welcome to the forums, I have literally only just joined up myself and there seems to be an excellent community here, I wish id found this place sooner!

Also suffering with joint pains, I get them really badly in my knees, they pretty much hurt 24 -7. Sometimes when I'm walking along the give way and I look like a right silly haha.

 

[teeny5]

Welcome Kara. I too have emotional bouts. Sometimes I get really bitter about the disease. Other times it doesn't bother me. Sometimes I get frustrated when people don't seem to understand at all what I am going through. That's why I love this forum. It keeps me sane.

Let us know how the Rowasa works for you. I was on it for a while and it didn't work for me, but I hope it does for you.

I get achey legs and back sometimes, but not really extreme. I know that joint pain is common in Crohn's though.