Just Diagnosed....Completely Lost

[DaughterofDagon]

So i was just diagnosed with Crohns 6 months ago, and i am completely lost. Ive had LOTS of GI trouble on and off for a good chunk of my life, but i was always told it was probably just IBS or that i was lactose intolerant. Then a doctor told me, "hey, youre probably not getting enough fiber in your diet.", BIG mistake, next thing you know i have 104 temp and am shaking uncontrollably in the fetal position. Worst part is im on vacation over 2000 miles away with no clue whats going on and my boyfriends mother, who we were visiting and has no clue whats wrong with me, is pushing me to eat to regain strength to "fight off whatever had".
By the time i finally get back home and to the doctor its been a little over a month of ups and downs and the blood tests are bad enough that he tells me i need to be hospitalized NOW. At this point i had never been in the hospital for more than a couple basic tests and a one week stay for bad strep, and im terrified of doctors and even more so of needles. I spend the next week pumped full of drugs and kept tranquilized because of my constant state of panic. They tell me i have crohns disease but not much more than what its called and that my digestive system will get irritated easily now.
ive done my own research and i know a bit about it now, but i'm having so many different symptoms and problems and pills my head is spinning, i dont know whats normal and whats not......i'm so lost

 

[Caleb9849]

Aw. You're not alone! Plenty of people have been through similar stuff. Welcome to the forum. You'll find a lot of love and support here.

If you'd like a bit more information about what this disease is, exactly (I know it helps me to know), here's a run-down:

The root of the problem with Crohn's is your immune system. Crohn's is classified as an "auto-immune" disorder which means that the immune system /attacks/ the body it belongs to. In Crohn's, specifically, the immune system attacks the digestive system...which is what your doctor meant when he said "it's easy for your digestive system to get irritated."

I see you are on some meds, how are they doing for you?

 

[glum chump]

Hi DaughterofDagon:

Yes, the initial symptoms and diagnosis are scary, especially when you don't know what's going on and the feeling of a loss of control.

What symptoms are you having right now? Did the doctor put you on any Crohn's specific pills? Have you a follow-up appointment with your doctor to talk about the symptoms you're having? It might be important to set up an appointment to talk about your symptoms so you can get them under control.

There's a fair bit of information on this site and other people's experiences and knowledge is quite vast. Being ill is scary and having knowledge can be empowering.

It might be overwhelming for a while...hang in there!

 

[DaughterofDagon]

not too sure about the meds yet, i almost always feel sick or hurting, lots of ups and downs, but things could be worse. Im still playing the what can i eat game and still adjusting to the lifestyle changes, theyre alot more stressful than i ever imagined and im sure that isnt making things any better lol.

 

[Caleb9849]

Yeah, it may take a while to come to grips. The calmer you can be, the better it will be for not only your mind but your body also. ...So try to calm down, but no pressure! ;D

Make sure to keep in contact with your doctor...if you keep having problems then you need to come up with a way of treating them. Medications can be scary but they can do wonders.

 

[DaughterofDagon]

im on apriso and entocort and a few others. right now its alot of back and stomach pain, pressure and nausea, LOTS of fatigue.....and a bit down feeling so trapped and helpless for such a long time this time around

 

[DaughterofDagon]

i see my doc every month and i used to be in the nursing field so im not 100% lost, only about 90% lol. i think one of my bigger problems with coping is then fact that almost everyone i associate with cant relate and i just come off as a big baby with a tummy ache to them...

 

[Caleb9849]

Hm. Are you sure you don't have anything else going on? Have they given you any Prednisone or any other such strong-acting but annoying-side-effects drug?

 

[Caleb9849]

almost everyone i associate with cant relate and i just come off as a big baby with a tummy ache to them...

Man, that makes me really grateful to have friends that show me a /lot/ of sympathy for what I'm going through. Maybe if you told them some details about the disease, they'd be less careless (although it can be hard to talk about the disease for some people).

In any case, there's nobody HERE that will treat you like that. :hug:

 

[DaughterofDagon]

i was on prednisone and flagyl the first couple weeks after the hospital, but the latest theory is my meds arnt working as well because im fighting off anemia...

 

[Caleb9849]

Ooh, maybe that could be causing a lot of your symptoms right now then. Dunno about that myself though, I'm not an expert on anemia.

 

[DaughterofDagon]

most of them know about the disease just from hearing me talk about it, but they cant relate to it in terms of they think "tummy ache" when in reality its more like "please shoot me"

 

[Caleb9849]

Right. But if you explained to them some details about the disease (which you might not really even understand yet, but that's okay, you will in time ), they might think to themselves, "Oh....well....that kind of sounds like quite a bit more than a tummy-ache."

 

[krbsmom]

Hi Daughterofdagon, Im about six mths into this new experience too had emergency surgery this past Aug, not a fun way to find out you have crohns. My emotions too go all over the place and no one does understand what you're going thru...bluntly its a bitch !
Im not on any meds yet but have found some relief with vitimins and supplements (herbs) although I know they don't work for everyone, they have done wonders for me...still major thing is nausea and being so damn tired alllllllll the time...but Im better than I was with nothing.

 

[Astra]

Hi Daughter of D
and welcome

I take it your Crohn's is in the small bowel, hence the Entocort?
This might take a couple of months to get going, it's relatively mild compared to Prednisolone. Are you taking 9mg?
What are your symptoms, mainly diarrhea?
A low residue diet could help with this, it works by slowing the bowels and resting them

http://www.healthcastle.com/low-residue-fiber-diet.shtml

Have a scoot round the sections on here, lots of info and advice
good luck, lotsa luv
Joan xxx