I need some help, ideas, suggestions....

[ontariomom]

So quick background :

year and a half dealing with diahreea, fistulas, seton in, then started with the adominal pain....

Colorectal surgeon, his cheif of staff, and every other dr who has seen me has told me i have Crohns Disease.

I got a referral back in April to a GI who is the ONLY one who is can dianogise me and start treatment.

Went to my local NP yesterday and had her check into my referral, when it was and who it was with.

got a call from the clinic today, saying they finally heard and my appt with the GI isnt til October!!!!

Tomorrow my NP is back in and the messge will be passed to her. And i said i want to see about getting into someone else quicker.

I just want to spend a day, one friggin day with no pain. Is that too much to ask??????

My NP said that they are leary of giving me just pain meds cause they dont solve the problem of the inflammation, but she cant give me any treatment for that.

She did mention Prednisone. And said it might be an option.

But the problem is that if i get anything that will help the inflammation , then when i get this next colonoscopy done that needs to be done before the GI will dianogse me, then it wont show anything will it?????


I am so close to the end of my rope here. I cried for about 20 min, until it started to hurt my stomach. I made 4 dozen cookies and have ate two, pretty sure i will regret that soon.My next thought is a cranberry juice and rum.

I am so .............frustrated. Angry.

What can i do. What should i do. What shoud i be trying to do?????????

I need some suggestion on how to deal with the next 4 months then i will see the GI, then will need a scope, then will go back and hopefully before xmas i will have some treatment. But honestly with the appt not til october i cannot imagine how it will be done before xmas.

I am seriously stressing and its hurting me.

 

[mainekitty]

If it were me, I would push to see someone sooner. Even if you need to cry in a doctor's office or over the phone - you need to be your own advocate and insist that you can't wait that long to be seen. Your quality of life is getting worse, and this is urgent.
Hugs - I hope that you get treatment soon!

 

[sammies]

I don't mean to be am alarmist but this disease works fast and can be very aggressive. Waiting 5 months for treatment can be very dangerous. I would think you need to see someone now. I don't know much about Canadian health care. Can a visit to the hospital move things faster for you? I am sending good vibes to you. Keep us updated.

 

[livegreen]

Hi Ontariomom:
I do think you should see a doctor soon. What if you went into the emergency room? You should isist that they check your CRP, Sedimentation rate, and test you for Pancreatitis, Apendicitis and anything else.
I am not a doctor, but I have been there too. After insisting that the doctor check me for everything that he could, they found out that I was having pancreatitis.
Forget about cookies, rum and juice. That will only aggravate things.
I have completely changed my diet I am now Gluten Free and Vegan. I do not use any sugar.
If you show up at the Emergency room they will not send you back home.
Best wishes
p.s: The CRP and sedimentation rate show level of inflammation.

 

[afidz]

I'm sorry you feel the way you do, the beginning I think is the most frustrating. I take a news that isn't necessarily a pain killer but it calms the cramping down. Is called bentyl. I agree with everyone else, you can't wait till October, that's giving the disease to much time to do bad things. If your NP can call the GI and try to push up your appt as a health care provider she might get further than you can. Keep us updated and feel better soon

 

[ontariomom]

I was wondering if leaving it for that long was a bad idea. And since according to my file i am a 'complex case' it makes me wonder what the hell they are thinking. I just dont understand dr's.

there is a local GI, well, 40 min a way,( better then the 2.5 hrs for the oct. visit) he isnt a specialist but i am going to see now that all my testing except the second colonoscopy has been done, that maybe he can see me and treat me.

Ok and the cookies were a bad idea, they came through me...... but the drink i enjoyed.

My NP is supposed to contact me today or monday when she gets home from her conference.

I am just so sick of putting pushed from dr to dr..........

 

[ontariomom]

So i did get a call back from my NP but unfortuneately, when i got the message the office was already closed. It closes early on frdays.

So monday i will call again first thing and maybe we can figure somehing out.

I was talking to a friend today at the grocery store and she said the same thing, that i cannot wait 4 more months, who knows what can happen. She was shcoked it was that long.......

thanks for all the support. I am very frustrated and i dont really understand a whole lot about this disease, over and beyond what i face each day. I need to sit down and talk to a GI so i can understand better what i am up against and what is in store for me. I read stories on here and they honestly scare me and i keep thinking there is no way i can handle some of this stuff.

I just need a dr that can actually treat me and explain what i need to do.

 

[afidz]

Every Crohn's case is different on what kind of foods you can handle. so here is a general idea of what I stick to (and don't) when I'm flaring. I don't drink alcohol, I stay away from the really fiberous raw veggies like celery or broccoli, as for fruits don't eat the skin on anything or eat any fruit that you can't avoid the seeds to (strawberries) and avoid citus (the acid in it will make your stomach go mad). I have never had a problem wit any meat but I know other people stay away from pork. Yogurt is my godsend. I will go by a huge tub of it and only eat that until its gone and start feeling a little bit of relief from that. The good bacteria helps fight the bad stuff in your stomach. I was always told by my doctors to drink gatorade because you are probably dehydrated and it replaces the electolytes that you are loosing in the bathroom. oh and no nuts seeds or popcorn, they don't digest easily for anyone and they can get stuck in the ulcers in your intestines. I hope this helps!

 

[livegreen]

If you are still in pain you should go to the Emergency Room.
Abdominal pain can be serious, it could be anything. ( Ciliac( Gluten intolerance ( wheat)),Crohn's, Colitis ,Ependicitis, Pancreatitis....etc...)
Don't waste your time being afraid. I have lived with Crohn's for 25 years. There will be many days that you will be happy and pain free.
I have radically changed my diet, and made so many changes to the better.
Tell the Dr. at the ER that you are in pain. And tell him/her what is going on.