New and man this sucks

[Graphic]

Hey everyone. I just joined and have read a lot so far. Very interesting and glad to see so many people can stay so positive.

Just a little background I'm 24 years old pretty active with work and school. I work at a nuclear plant and go to school full time at night. (I should have graduated long ago but that's what happens when you party a little too much)

I don't have insurance which is really a killer right now. If I had ever thought it could be something so major I would have made sure everything was in order with my insurance before I went. However that's what happens when you think. I will be getting insurance but it's going to be 6 months before they really start to pay for anything. I can deal with that but man it sure hurts what I've had to pay so far.

Well just to start out I haven't really ever been the type to have any problems. Never really got sick for more than a day at a time. Never had any trips to ER or anything like that. Recently however I got to where I was having pretty bad pains in my lower right quadrant. I just dealt with it for the most part because it was something that wasn't UNBEARABLE. I just always assumed it was something I ate or just constipation etc. As many other people I never had even heard about Chrons.

I finally decided to go to the doctor after the pain got so bad one day that I could not even roll over in my bed without severe pain. Almost felt as if someone had vicegrips on my abdomen and was just twisting away or like I was getting stabbed over and over. I couldn't even stand up straight the pain was so horrible. So I bit the bullet and went to the doctor even without insurance. I have never had a pain that bad so I figured money should never be a factor when considering life and death. Not that I thought I was going to die but you know what I mean.

I went to a urgent care type place. (First Med) and was seen fairly quick. My doctor initially was thinking it was a kidney stone and gave me lortabs and antibiotics because I had blood in my urine and my white blood count was up. Well after all that I was referred to get a CT scan. I went and got that done and after trying to drink that HORRIBLE milky drink. (Contrast dye?) the results were basically that I had inflammation in the RLQ and I think it was in the terminal illeum? The doctor that viewed the CT scan wrote on the paperwork something to the effect of 'Looks like it could be Chron's or Ulcerative Colitis) I guess I should get my paperwork out to be a little more clear.

Then I have to go to the digestive health doctor and I wait 50 mintues to talk to him for 10 of course. Tell him my symptoms and he gets all the results from the CT scan. From everything I told him and everything he saw he believed that it was going to be Chron's disease. So he of course wanted to go ahead and setup the colonoscopy. My test is on April 1st. (April Fool's how convenient) and before then I have to take in 3 samples of my stool and he gave me 2 120 capsule free samples of Pentasa to take. He says if that doesn't work he will probably put me on some sort of steroid to try and help build up the immune system.

So I know this has already gotten to be as long as a book. My apologies. It's pretty hard to explain it all in one paragraph without looking too stupid. I really don't know if you would consider my case "Mild" "Severe" or what. I'm still learning so much on this and there is tons of information out there.

I missed 3 days this week due to my second major flare up I guess you would call it. Monday i had to leave work early I was feeling horrible and started getting real bad abdomnial pains. Later that night I got a bad fever probably around 101 and started vomiting. (Vomiting and that horrible abominal pain is the worst as I'm sure you all know). After staying up all night with that I didn't get out of bed the next day because I could not roll over or anything withoout the horrible pain. Called my parents and of course they wanted to take me to the ER and my GF as well but I just didn't want to. So I laid in bed all day on Tuesday which also made my back hurt for having to lay in that same position all day. It is presently still fairly painful but I can roll over and actually stand up and do stuff.

Anyways I just wanted to give a short novel on my experience. I hope to learn tons from this forum and will be an active person now that I know I will more than likely have something that will be with me for life!

Thanks all!

 

[katiesue1506]

Welcome to the forum! Sorry to hear of your diagnosis, but there are great people here. The best thing you can do for yourself is stay positive. I was diagnosed my freshman year of college at 18 (now I'm nearly 21). I thought the diagnosis was the end of my life... but it isn't. You will have bad days, horrible days, days you don't wanna be alive... but you will also have days that are good, great, make you appreciate being alive. And despite being sick, sometimes other things in your life will overshadow the Crohn's and you'll feel like a million bucks.

I did have one issue with something you said your doctor told you

He says if that doesn't work he will probably put me on some sort of steroid to try and help build up the immune system

The 2 most common steroids used for Crohn's Disease are Prednisone and Entocort (a little milder than Pred) but steroids won't build up the immune system they will actually do the opposite. Maybe he said it wrong or something, but if he is saying something like that to you, you may want to see another doctor or verify that he really thinks that.

 

[Graphic]

I think that was more of the gastro's nurse that said it. I could have just misunderstood her. Hopefully I won't have to have those! But knowing my luck I will :lol:

Thanks for the reply.

 

[mandy]

new here

hi, i have just joined today so i dont feel so alone with this disease.
I am 40 and have had crohns/colitis for 20 years although the doctors cant seem to decide which one i have!
I have just got over a recent bout of it and am on pred which i am slowly coming off, also on ascacol and imuran for the last 3 months, i have been getting better until last week and as i reached the golden no. of 5mgs pred my symptoms have come back, pain in the right side, cramps after eating, sore mouth , etc.
i am wonering if it the cd coming back or if its the body reacting to he tapering of preds.
Doctors are usless and my hospital consultant cant see me until april, am still waiting for results of biospsy which were taken in december!!!!
Does anybody have an ideas or suggestions.
thanks

 

[Clubber]

Hey Graphic, i am 25 and had a very similar situation to yours i hope they get you sorted soon. I have been with the forum for 2 days now and i knew next to nothing before but i have learnt more in the last 48hrs than i did in the last year since being diagnosed. Good luck and see you around

 

[Collette]

Hi Graphic and welcome. I am new to this site too. I found it while Googling crohnes and I never thought that I would be here as much as I am. Everyone is really nice and there are so many of you that have been through so much. You are very encouraging to everyone else. I felt overwhelmed with my crohnes and my mother was the only one who could really relate. She has had an iliostomy for 40 years. My husband knows it is serious and it needs to be taken care of but because I am a very strong and independent woman with a very HIGH pain tolerance, he just can’t read how miserable I am sometimes until it is a full blown flare. Thanks to everyone!

 

[kello82]

hey graphic!
well good luck with your colonoscopy on april fools day! i hope that it will provide you and your doc with some answers.
but until then hopefully the pentasa will calm things down a bit. its a pretty common med that a lot of people start out taking.
look forward to seeing you around!

mandy- you can start you own thread in the 'my story' section and introduce yourself there! and then more people will see it and welcome you

 

[bethyd78]

Hi I'm Beth I have been sick for a long time I guess about 12 years and have not
had a definitive diagnosis until now The dr ran a promethesis test and it said crohns. I have been told I was crazy addicted to pain med and there is absolutely
no reason in the world I should have this horrible pain in my belly. I have also been told if you don't have fistulas you don't have belly pain.

 

[Graphic]

Alright well thanks for the replies people. My account got deleted by admins because supposedly I'm a spammer? That is just about stupid as it can get. I didn't know spammers type novels out in forums.

 

[jamie2462]

hey graphic. welcome to the forum. I was a spammer too...comes with being a hotmail account I think. But we're back up and running now right?

Ya I am starting back my first HALF day back to work tomorrow after being off work for 3 months.....To say I am a little nervous would be an understatement...but It's all good...

I still have fistulas that are healing but they are internal perianal ones so as long as it does not freezing rain too much here tonight and I dont fall going to work...I should be good...man if I fall on my bottom they can expect not to see me at work again for a while...O lordy help me get there in one piece....

It's gonna be the longest couple of hours of my life.

 

[mRae85]

welcome, I am new here also. under my story I gave a link to the blog i wrote today because I seriously don't know how to turn 8 years into anything less than a story now after reading yours I am wondering if maybe i shouldn't have just posted more of it lol!!! I hope you stay here, this is the first I had ever seen this place but I love it, knowing that other people know what you are going through has to be the best thing under the sun seriously! Even tho alot of people have Crohn's, it seems no one knows what it is unless they have it or know someone else who does so finding one place to talk to so many people and relate to them all on so many levels to me is becomming my newest med and for once... I like this med!

 

[Graphic]

Well I already had my colonoscopy. For some reason my doctors nurse told me my test wasn't until the 1st but that was the follow up!

My doctor did confirm I have Chron's. He put me on some Flagyl afterwards also I guess because I had some type of parasite in my blood? So I have to take that for a month or so I guess. I'm not really sure it says no refills so of course after the test I don't remember too much!

I haven't had any flare ups in forever. I have felt completely normal since the test and not even really the slightest pains. Of course I'm over here knocking on wood as I speak. I've had completely normal stools daily ever since the test as well. They were pretty normal before except for the two times I had some major flare ups. Lovely thought I know.

I have Pentasa 500 mg 2 Pills 4x daily.
Flagyl 3 times daily
Lortabs 5mg -- whenever I have pain. I hate taking it cause it makes me so sleepy lol. Plus I work 60 hours a week and school at night so I try to stay away from it best as possible.

Anyways just wanted to give an update sort of. Sucks that I have Chron's but I can deal with it. Let's just hope we all can keep those flares away!

 

[mRae85]

I am due for another one of those lovely tests... I am sure I will post a rant 10 miles long about it also lol!!!

flagyl *shudders* if you start to feel as tho your skin is going to fall off, like litterally just having on cloths hurts... stop taking it and call the Dr right away. I am allergic to that stuff and that was my first main sign I couldn't ignore!

yea, it suck for all of us but what don't kill us makes us stronger right? ! I am glad to know that you have managed to get things under control, Pentasa is something I am going to mention to the Dr when I go in on Monday I have noticed alot of people on here have been put on it and I am willing to do anything right now to break away from the pred. I have been on tramadol for a while now for pain and maybe I just have a high pain tolerance but that stuff couldn't really help a person who stubbed thier toe.... lortabs are decent but yea, they will make either make you sleep or sleepless, it goes both ways for me (depends how long I have been unable to sleep) Seriously... do you ever sleep? 60+ hours for work +school = ?? hours of sleep haha!

 

[Graphic]

Haha well if I had graduated on time instea of drinking and partying in my earlier years I wouldn't be working and going to school this much still. But that's how it goes I guess.

I usually get in bed around 10 and get up by 5. I dont fall asleep till 11 usually unless I'm really tired.. so about 6-7 hours a night. Not TOO bad. But once lunchtime rolls around and I eat.. I'm ready for a good long nap.

Goodluck with your appt. Pentasa seems to be working for me. I don't even really know how much it costs yet I've been getting free samples so far. 120 capsules in a bottle and he gave me 2 bottles. Hopefully I'll get some more .. after I took my colonoscopy he told me to just try and get some more from him. I'll take it!

 

[mRae85]

Nice, the entocort has no free sample or any kind of program at all from what I have heard, I really wish I could be put back on it 3 a day. As I would cut back to the 2 I'd get sick again and by the time I hit 1 a day... well, Id be super sick so I guess it just wasn't made for me, but 3 a day... I was lovin' and livin' life to the fullest working 6-7 days a week and actually felt as if the time before then had been nothing but a nightmarre. So for now I am stuck with pred and the hope that my Dr adds something else so I can try to get off it.

And heeey, we all get get a bit mixed up with partying too much, it is when we finally decide to put it on the back bunner and only do it when we have the spare time we can say we have finally went from "rebelious teenager" into "trying to become a mature adult"