Sure you just got diagnosed with a disease you know nothing about, but...

[Petra1991]

We can't get you into our office for 3 months!!!!

(ok so, I do curse like a sailor...so that's why there's gunna be beautiful little *beeps* in here because I'm that ticked with my GI honestly)

Ok so as I've posted in a few other places, three real bad bouts of constipation in 6 months landed me in for a colonoscopy. I was ok with that.

Upon waking up from anesthesia (I can't spell lol) when I was fully conscious, my GI was going over the results with me (I joked that I wanted to keep the pictures for FB ...yes I"m that much of a dork) and said that he had done a biopsy because he had found...crud I can't remember the term, but because he had found markings(?) in...a body part I can't remember the name of...that was pretty hard to get to...and was pretty positive it was crohn's (and I tried not to start crying right there...) and he said that even if the test results came back negitave, he was still going to treat me for crohns anyway (yeeeeaaah) espically because my mother had it as well

Well I waited about three weeks or so to get the call from his nurse that I did have crohns, and once again, tried not to cry right then and there (i cry very easily heh)

So here's where the fun part is.

I move back into school about...mid august

When's the earliest he can see me? (after ive just been diagnosed with crohns and have no medication that i should be taking, no diet restricions, no anything to help me at all) the END of July.

I know I know doctors have lives and all, but I'm scared. I'll just put it out there. I'm beeping scared.

I don't know if how my body is acting is normal or if it's not or what and it's driving me up the wall!

whats worse is i wont have much time between when he's able to get me on medicine, and school move in time - so i wont really know how the medicine will effect me until...im away from home at school (granted i only live 20 minutes from school so it's not like im a few states away or something)

i just ugh. I udnerstand that my GI has a life and all...but seriously? Let a 19 year old girl who knows NOTHING of what's supposed to be going on in her body go for 3 months after a diagnosis like that?! I just dont get it. I really dont.

...ok I think I'm done venting heh...(yes the anger over this has brought me to tears a few times)

whats worse is that he said it's crohns with constipation. what the heck is that supposed to even mean?! maybe i don't have epic googling skills, but its hard to find information about it that arent crazy insane really severe cases!

and i honestly have no clue what to do at this point because his office wont call me back about rescheduling the appointment. i started going to my step-mom asking her about if this or that was normal or something, but she honestly can't help me that much and i know that and she knows that, she knows about as much about this as i do...which is absolutely nothing

...ok now I think I'm really done heh...

 

[Jennifer]

I'm sorry. I think most of us knew diddly about this disease when we were all diagnosed. I gave you a link in your other thread on what crohns is but you probably have an idea since your mom had it. I think the crohns with constipation just means that you have constipation instead of the more common symptom, diarrhea. Here's the link again in case you missed it:
http://www.nlm.nih.gov/medlineplus/ency/article/000249.htm

It's REALLY common to have to wait 3 months to be seen by a GI unless its an emergency. Remember that you can always go to the emergency room if you think you need to. You know your body best and know when something is wrong and when you should get checked out. A general rule of thumb here is that if you're even entertaining the idea of going to the ER, you probably should. Until then you may have to wait for your appointment. I know its a long wait and that you're confused. We'll answer any questions that you have and remember that you can always call the office of your GI and leave them a message of how you're doing in case there are any changes. If something sounds serious, they may try to see you sooner.

Welcome to the forum.

 

[dreamintwilight]

Hi, Petra! Welcome to the forum It's good to see another Floridian! (I live in Chicago now, but I was born and raised a native Floridian!) Though, I am sorry we are meeting due to the fact that you also have Crohn's.

I can be somewhat of a cryer too, so I know where you are coming from and I won't lie, finding out you have Crohn's is not easy. It's a whirlwind of emotions including confusion, fear, anger, frustration, etc! Though this is something hard for even me because I'm a chronic worrier, it's best not to get too worked up about the what-ifs associated with the disease. Yeah, I have my moments where I break down and I sob to my husband, but you learn to roll with the punches. Some good advice people have taught me on the forum is to take it one day at a time. IF you think too far ahead it just gets to be too much because of how unpredictable Crohn's can be. Even for people that have had it for years!

My best advice to you is to look through this website and do your own research online. Arm yourself with knowledge. It will lessen the fear of the unknown. Don't be afraid to ask questions (even if you think it's a lot - it's natural to have lots of questions at the beginning!) on the forum and vent when you need to. Best to let it out than let it in. The people on here are great too. We're pretty open here! And have fun in the games section too. Crohn's doesn't always have to be a downer.

Glad you found us

 

[Cat-a-Tonic]

Hi Petra. Unfortunately as the others said, that is a fairly typical wait time to see your GI. But you may be able to get in sooner. When I scheduled my colonoscopy back in March, they told me the soonest they could get me in was June... 3 months away. I was so upset that I called them back, in tears (I'm also someone who cries ridiculously easily!) and said that I'm feeling bad and having lots of d and pain and that there was just no way I could wait that long. The receptionist I talked to was fairly unsympathetic and said they had no openings, so I asked to speak with the nurse. She was more sympathetic and I think she had more power over the scheudling than the receptionist did, and she was able to get me an appointment for the following week. So I would say definitely call your GI's office, and if you cry that's okay, and just let them know what's going on and that you need to be seen sooner. If they say no, ask to speak with the nurse or the doctor directly. Good luck, I hope you are able to get a sooner appointment!

One more word of advice - since I cry easily and get flustered easily, I have taken to writing down all my questions that I want to ask the doctor. I didn't do that the first time I saw my GI, and I've been kicking myself for it. I've now got a full page of questions for my GI and my next appointment with him is next month, so by that time I'll probably have about 10 pages of questions! You sound like you're full of questions for the doctor, so I would definitely recommend writing down everything.

 

[Mike]

I was told that by a GI when they thought I had a stomach hernia. So I found another and it was one of the best moves I have ever made. If you are in pain there is no reason to sit around, talk to people, find out the names of some GI's people like, and go to another.

Also do what others have said and look around on here and learn. I have learned more in being here in the past couple weeks than reading books and articles in the previous couple of months.

 

[katiesue1506]

The best thing to remember is that, even though your appointment is so far away, appointments aren't static. If you are feeling bad enough, they'll move things around to get you in. I've even had the GI nurses prescribe me Prednisone to fix a flare without the doc even seeing me. Just keep in mind that most of the people getting appointments before you are the ones who've already waited or the ones who are in serious pain/flare. You can also always go to the ER if you are feeling bad enough, but you have to make sure you voice your concerns and tell the docs and nurses what you want. I know you're new to this, so you probably don't know what to do in a flare or what to ask for... but thats why this place is great! Just submerse yourself in this place and in any kind of Crohn's literature. Knowledge is your greatest tool.

 

[Rebecca85]

I would definately phone up and ask if they can prescribe anything for you in the meantime- straight after my colonoscopy they told me to stop the pred taper and prescribed me pentasa without seeing the consultant- I believe she made the call based just on the colonoscopy pics. So the consultant doesn't have to see you to give a prescription.

For info on diet, there is a good starting list in the food and diet forum called 'foods to avoid with ibd'. Try keeping a food diary and pay particular attention to those foods. They may not necessarily affect you but they are the common culprits.

 

[Petra1991]

GOOD NEWS!!!!

I called this morning, and got the appointment moved to next Thursday WOOO!!!!

 

[Crohn's 35]

Amazing! that is good news. Dont ya just hate having to wait so long?

 

[Petra1991]

Amazing! that is good news. Dont ya just hate having to wait so long?

deffinately hate it, espically since things haven't been working as they normally do this week, im not sure if that means a flareup or what (because i have no clue what a flareup is supposed to be like)

 

[Crohn's 35]

A flare up can differ from person to person , depending on where the disease is exactly. What are your symptoms today?

 

[Petra1991]

Well normally I'm just plain ol constipated (lotsa pushing, little result) but it's been a bit worse a few days this week, but I"m still going every day, but I only get a big result if there's laxitives involved

 

[Mountaingem]

YAY! Glad to hear you're seeing the doctor sooner. I am a firm believer in NOT waiting, lol. I imagine the worst case scenario and freak myself out lol.

I always tell the doc "If I was Angelina Jolie would I have to wait? Would you want YOUR wife to wait?" They usually get the idea!

 

[Petra1991]

Update~!

Saw the doctor today! (and I was half awake lol)

He's put me on Pentasa (4 pills twice a day) and did a blood test that goes in and looks at some genetics (promethius? i cant spell anything greek >>)

He also explained exactly what I have more, which made me feel a lot better. I'm at both ends of the straw. I have IBD constipation wise...but also have Crohn's

So that's how it went I see him again in September and hopefully the Pentasa will be the only medicine I need

 

[Jennifer]

Glad you're finally getting some answers.

 

[ameslouise]

It's great you got in sooner, got some meds and some answers!

The squeeky wheel gets the grease - never let a receptionist push you off if you don't feel you can wait. Scream and holler or go to the ER!!

Good luck and hope you get to feeling better soon - Amy

 

[rob911]

hi petra im experiecing same ive been waiting 2 months for my colonoscopy its on 16th aug,ive tried ringing and speaking to dr agrwal but he's said there's nothing they can do also spoke to gi doc but its got me no where ive been worrying like hell