Many Questions

[ontariomom]

I know i am new at this and i know that ihavent been "officially" dianogsised. But I havent been told anything about this disease. I have been reading this forum for a couple of weeks and there is SO much info, but i still dont know what it all means....lol....

So maybe some one can help me? Maybe clear a few things up? Some of these questions may be kinda dumb but like i said i havent had a dr sit down and tell me what to expect or what i should be feeling or not feeling...i have had no info.

So my colorectal surgeon and his cheif of staff both said i have Crohns but will not give me an offical dianogsis without the GI dr. Which ihave a referal for but havent heard from No idea who i am seeing.....

Now lately this is how i have been feeling:
I have cramping/pain in my tummy
BMs range from loose to semi normal, to every hour to several times a day, and then there are weeks where i spend an hour or so on the toilet in te mornings feeling like my entire body is contracting while i have a bm and then i am on the couch with stomach pain for hours......

I eat and get nauseous
I eat and will ahve to run to the bathroom
I eat and will end up in pain the next day--tummy pain

yesterday was a day when i couldnt eat at all....took me 5hrs to eat half a chicken burger ..every two bites made me nauseous and then i had pain in my tummy all day....

all i hve for pain is T3s and i was taking them 3 at at time which didnt take the pain away but took the edge off enouigh i could at least move .....

I know there are many foods that it seems even if i smell i get diahreea.
I rarely leave the house cause of the pain or bathroom runs
I quit work a year ago and cant imagine i will even feel ike working again and reading posts on here i am so amazed at what some of you go through or have gone through and still seem to hve a life. I cant even dream of having a normal life....sometimes not even a normal day.


Here is a dumb question: How do you know if you have a flare?

How do you feel everyday? i mean iwill i feel like this All the time from now on? Or will i eventually get some treatment that will make me feel normal?

I just dont know...dont understand.

how do you make people around you understand ??? I mean people want me and my husband to go out or come over ......and really I dont mind if they come here but will i get to a point where i will leave my house again?????


Can someone please explain to me any of this??? I feel so lost.......I have read about treatments etc but i dont know what to expect as far as how i will or should or could be feeling.

Or is it that different for everyone????

help!!!!

 

[Manzyb]

Hi! I am sorry you are having such a hard time right now, and i hope i can give you some info to help you out.

A flare is when you have active disease. This means that you have inflammation and/or ulcers in your intestine. it usually brings diarrhea and pain with it.

You won't feel like this all of the time. once you get your GI sorted out, they will try you on some medications, but don't get discouraged, you may have to try a few before you are back on the road to good healthy.

Ugh... i have no idea how to make people understand!!! If friend's ask what is going on, i pretty much try to make them imagine the worst stomach flu they've ever had and multiply that by 100.

Are you on any medications right now? I would call the doctor's office and keep bugging them until they tell you they have your referral. That is what i had to do when i got a new GI doctor. Bug the heck out of them!!

 

[Jennifer]

What tests have you done or are the doctors just listening to you symptoms? You must have had at least blood work done. That would show if there is active inflammation in the body or not.

How do you know if you're in a flare? Well Manzyb got it right where the disease will be active and will show active inflammation and you will more than likely feel it (not all the time though as some people don't show symptoms but it seems like you do). Most people have chronic diarrhea and some have constipation instead. Some people will see mucus or blood in their stool but we don't really want it to get so bad where we're seeing blood you know? There are a ton of different symptoms out there and that's where everyone is different.

There are many different medications out there. Some that suppress your immune system to try and stop the disease from even starting any inflammation, others that treat and try to control chronic inflammation and steroids that are used to treat active inflammation. I might be forgetting something. Once you have proper testing done and a diagnosis from your GI they will likely choose a course of meds from the above based on what's currently happening inside (be it inflammation, ulcers, abscess, fistula etc).

Unfortunately there is no cure for Crohn's so you'll likely be on medication for the rest of your life to not only get you into remission but keep you in remission. Once you're in remission you'll have normal bowel movements, no nausea after eating etc etc.

Pardon me for laughing at your question on getting other people to understand. There are two types of people in this world that we simply have to accept. Those who care and those who don't. That doesn't mean they don't really care about you just that they don't care to learn or they're just too stupid and simply can't comprehend basic concepts. Other people will listen to you and often even educate themselves and are more understanding and accepting. They understand that you aren't faking, that you do want to socialize and do want to eat certain foods but know that sometimes you can't and simply accept you for you. They know that you wont always be this way and will stick with you through the whole process of diagnosis, flares, treatment and remission. Best thing to do is try to ignore the people who wont listen and try to play doctor with you by telling you what you should and shouldn't eat, should and shouldn't do etc etc etc.

Remember though that you can always go out of remission but can always come back with the right treatment.

 

[ontariomom]

you know when i post on the forum i keep forgetting that everyone doesnt know me..lol....

yes i have had tests done.

Briefly: december 2010 started with diahreea lost an average of 4lbs a week, abscess ruptured, felt good for a while, ended up with fistual, then fistual in other butt cheek as well.

I have had blood work many times
endoscopy
colonscopy
Ultrasound
MRI
small bowel follow through

the two scopes showed nothing other then some small amount of inflammation from the endoscopy.

I use nexium and probiotics and T3s

In the past few months the cramping, pain and nausea have started and are almost daily. I have about 2 good days a week where it is minimal .

The small bowel and MRI both showed Crohns.

I am to have another colonscopy done when i get into see the GI.

I have mucous and blood in the toilet/stool on a regular basis.

Seeing blood in the toilet still freaks me out. Been seeing blood for a year now. I havent any blood for almost a mnth now.

I think that filled in all the blanks......

still dont know wht to expect....
and many pokings and prodding.....

 

[Jennifer]

My God. Well I've never had a colonoscopy without my GI doing it so I find it a bit odd that other doctors are ordering such tests and it taking so long for you to get a referral to a GI specialist.

I'm sorry you'd had bleeding. That doesn't come with IBS so if a GI says its just that, move onto another GI cause that one doesn't know what they're doing.

Sounds like rough going and your symptoms sound similar to mine when I was first diagnosed although I didn't bleed for a year to get a diagnosis. Hope you get a GI that knows what they're doing! Any other questions that we might be able to answer?