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Not sure yet.

S

SarahPajamas

Hi! I'm new here. I'm very scared! I'm going to be 21 in a few weeks and I haven't been diagnosed with Crohn's, but I think I have it. Everything I've read about it seems to be exactly what I have. I'm scheduled to have a colonoscopy next Monday. So far I've had blood work that shows I don't have Celiac's and I've had stool samples looked at to show it isn't a bacteria or parasite that's causing my diarrhea and weight loss. I also have trouble sleeping because my stomach pains are so great. I recently learned that the sores in my mouth could be caused by Crohn's. :( My doctor hasn't said that's what it is, but I only met him once a few weeks ago, and only for five minutes. he only asked me if I had pain, and how long has it been going on like this. I was very upset when I left his office, because I had learned nothing. he set me up for an upper GI, which came back normal. Though, the doctor doing the procedure said something about my apendix.. which really worried me. I'm realllly scared and I'm looking for support. I've lost 20 pounds in the last 4 months. (that's how long it's been going on for. I only went to the doctors two months ago, because I figured it would go away on its own.. ) ahhhhhh! thank you for reading, I hope someone can help me.
 
Angrybird

Angrybird

Moderator
Location
Hertfordshire
Hello and welcome to the forum :)

I am sorry to hear that are feeling so poorly at the moment. Whilst not the most pleasant of things it is good to hear that the doc has ordered the colonoscopy, these can be really good at showing what is going on inside and help towards a definitive diagnosis. In the meantime it may help with symptoms to go on a bland low residue diet, we do have an undiagnosed club that is worth checking out so you can have a chat with the folks here as well: http://www.crohnsforum.com/forumdisplay.php?f=75. Also keep an eye on the doc, if you are not happy with care you are getting from them then look into getting referred to a different one - you need to be comfortable and not rushed with who you are seeing.

Wishing you lots of luck for next Monday and pls keep us updated on how you get on.

AB
xx
 
S

SarahPajamas

I guess my next question is about the colonoscopy.. he said i'd be awake for the whole thing? that sounds scary and painful. I'm thinking of cancelling my appointment because I'm so scared. I've never had anything like this done before and he didn't say anything reassuring over the phone an hour ago. :(


what should I expect the procedure to be like?
 
mario

mario

Sarah, please don't cancel your appointment. You can request a mild sedative, which wears off fairly quickly so you don't need to be admitted. Basically it makes you temporarily 'not care' and the procedure will be painless. You may need to call and request this in advance. Good luck! Keep us posted.
Marie x
 
Tummy trouble

Tummy trouble

Hi Sarah, although a colonoscopy isn't one of the nicest procedures to have, keep your mind focussed on what you hope to get out of it....hopefully more knowledge about what is causing your problems at the moment and a clear way of moving forward and getting treated. The staff that offer these procedures are used to people feeling uncomfortable about the test being done and in my experience they do their utmost to put you at ease and it isn't painful. I had one earlier this summer, I had the sedation and I don't remember very much about it, other than feeling like it was over and done with in seconds. Good luck :)
 
Angrybird

Angrybird

Moderator
Location
Hertfordshire
I agree, please do not cancel this scope as it is important to help get a diagnosis. With my first colonoscopy I can honestly say I don't remember a thing - my mum even says I stopped in the middle of the zebra crossing out front the hospital and held up traffic afterwards I was so out of it. You are usually given a med that makes you feel sleepy and the idea is that you do not remember much of the procedure at all. As already mentioned explain that you are very nervous about this, the nurses/doc have a duty of care to make you as comfortable as they possibly can.
 
S

SarahPajamas

so I have to REQUEST a sedative? They don't automatically do this? My doctor literally told me nothing about this procedure. I'm scared out of my mind and no one is helping me :(
 
Angrybird

Angrybird

Moderator
Location
Hertfordshire
Things may be different in the US but for me it was something that is automatically given, I didn't have to specifically request anything. The scope can usually reach up to where the colon meets the small bowel and docs check to see how it looks inside, most times tiny biopsies of the bowel lining get taken so help towards a definitive diagnosis. You will be given a prep to take the day before that is used to clear you out so the docs get a unrestricted view of things. You may find afterwards you are a bit bloated and gassy as they do tend to use a bit of air to open the bowel a bit so the scope can get through more easily. Because of the meds given for the procedure you will need to have someone with you to take you home afterwards, I think the actual test takes about 20mins.
 
lisakuney

lisakuney

They always give at least Versed, and sometimes Fentanyl and other good stuff. Call the hospital and ask for the dept that does the testing, and ask what that particular doctor usually uses.
 
David

David

Co-Founder
Location
Naples, Florida
Hi Sarah and welcome :)

I just wanted to chime in with some support. I know all of this is scary but we're here for you anytime you need us. Please keep us updated as to how you're doing and let us know if you have any questions.

All my best to you.
 
lisakuney

lisakuney

PS :) Because I have a panic disorder, I requested Propofol, which pretty much knocks you all the way out. You can ask your doc to have a conversation with you about anesthesia choices.

Good luck!
 
Last edited:
S

SarahPajamas

lisakuney said:
PS :) Because I have a panic disorder, I requested Propofol, which pretty much knocks you all the way out. You can ask your doc to have a conversation with out about anesthesia choices.

Good luck!
Click to expand...


I wouldn't even know to do that! I don't anything about what's going to happen to me. I'm so nervous. I have anxiety, bipolar disorder, depression, PTSD, Panic disorder and borderline personality disorder. This is just another thing to be medicated for for the rest of my life. I'm terrified. :(
 
David

David

Co-Founder
Location
Naples, Florida
Sarah,

Out of curiosity, have you had your vitamin B12 levels tested at any point? If so, what were they? I ask because people with Crohn's (and Celiac) are commonly deficient and that can cause a lot of mood (and other) problems.
 
David

David

Co-Founder
Location
Naples, Florida
I'd suggest you request it. It's a VERY common deficiency in people with Crohn's and Celiac and if untreated, can lead to a whole host of problems including anxiety, depression, mood changes, and much more. Get the actual number when they test you and let us know what it is. We can provide additional insight from there.

Do you by chance have tingling or numbness anywhere?
 
S

SarahPajamas

I have a killer headache right now. but no tingling or numbness.
I have poor circulation in my legs, so I can't sit still for very long.

I was driving earlier and I got really dizzy and almost passed out. I had to pull over and get my friend to come get me and have his friend drive my car home. :(

life is getting wicked scary and I don't like it at all
 
S

SarahPajamas

so I had a pretty bad asthma attack early this morning and was at the hospital for a while, then sent to my primary care doctor who prescribed me Prednisone (sp?) and said I'd have to call my GI doc who said that I can't have the colonoscopy done until I'm all done with the meds.. next earliest he can see me is the 14th. :(

when will this all get better?
 
Beatit

Beatit

SarahPajamas said:
so I had a pretty bad asthma attack early this morning and was at the hospital for a while, then sent to my primary care doctor who prescribed me Prednisone (sp?) and said I'd have to call my GI doc who said that I can't have the colonoscopy done until I'm all done with the meds.. next earliest he can see me is the 14th. :(

when will this all get better?
Click to expand...
You need to stay strong. Predisone is just a steriod to help in healing. I have taken it twice and it will heal you and you taper off it. I dont have asthma but I suggest you get into meditating. Think of healing and feeling better. Your mind is very connected to your intestines and how you feel.

When I first got crohns I was going green to just watery stuff. I felt like someone hit me with a truck. I was super skinny and felt like giving up laying on the floor up to 5 hours etc. Parents thought I was lazy after awhile and the fact I never finished college really got them blazing hot. I of course knock the drama out of my head and heal inside through the mind. Healing may take some time as in months of time to do but dont give up..


I have had that dizziness multiple time when I first got it around 18 to 19. My heart would beat I could hear it and my ears could hear my insides etc.
 
Beatit

Beatit

Yeah those sores in the mouth I got before I got crohns disease I remember that clarely now. Just wanted to put that in there.
 
Beatit

Beatit

SarahPajamas said:
i'm supposed to take 3 pills a day. for five days. :(
Click to expand...
They usually only give prednisone when bleeding. I have never seen it given for Asthma unless I read it wrong. Yeah 3 pills for 5 days you probably taper too most docs want you to taper off. If you the diagnosis for crohns Ascaol is a pain the but its 12 pills a day most likely the doc will tell you.
 
Beatit

Beatit

SarahPajamas said:
no, it's for asthma. and i'm just supposed to stop when I run out
Click to expand...
I would look into getting a diagnosis. I know little about asthma I know my mother had it and she did have to inhale the purple thing which I think was a steroid. I wish you luck! Asthma is another inflammation disease.
 
Catherine

Catherine

Moderator
Pred is given in short courses to treat asthma. When my daugher is on pred for crohn her maintenace med for asthma is decreased to keep her lung function at the same levels.
 
motheroftwins

motheroftwins

Location
Northern, California (In the beautiful Napa Valley
SarahPajamas said:
Hi! I'm new here. I'm very scared! I'm going to be 21 in a few weeks and I haven't been diagnosed with Crohn's, but I think I have it. Everything I've read about it seems to be exactly what I have. I'm scheduled to have a colonoscopy next Monday. So far I've had blood work that shows I don't have Celiac's and I've had stool samples looked at to show it isn't a bacteria or parasite that's causing my diarrhea and weight loss. I also have trouble sleeping because my stomach pains are so great. I recently learned that the sores in my mouth could be caused by Crohn's. :( My doctor hasn't said that's what it is, but I only met him once a few weeks ago, and only for five minutes. he only asked me if I had pain, and how long has it been going on like this. I was very upset when I left his office, because I had learned nothing. he set me up for an upper GI, which came back normal. Though, the doctor doing the procedure said something about my apendix.. which really worried me. I'm realllly scared and I'm looking for support. I've lost 20 pounds in the last 4 months. (that's how long it's been going on for. I only went to the doctors two months ago, because I figured it would go away on its own.. ) ahhhhhh! thank you for reading, I hope someone can help me.
Click to expand...
Hi Sarah, sorry your feeling so poorly and it can be very frustrating leaving a Dr. appointment with no answers. I am glad your getting your colonoscopy done on Monday. The prep is the worst so I am sending you good vibes in your direction. The waiting for the biopsies can get pretty frustrating too. :( Wishing you the best of luck and let us know what happens.
 
S

SarahPajamas

so, I guess I need to leave this site now because all my biopsies came back normal and the colonoscopy was normal. and everything is normal..

I'm so alone.
 
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