Newly diagnosed, yet not diagnosed

[Alberta_sweetie]

I recently found out that I have either ulcerative colitis or Crohn's after being hospitalized for 10 days. Now that I've been released I still don't have an actual answer. I was told that the IBD specialist would be following up with me to do more tests and when I called their office after 2 weeks they still hadn't pulled my file to her actual office. I'm struggling with trying to eat but never really feeling hungry and feeling dizzy and foggy all the time. I tried to talk to a nurse at the specialists office, but they won't talk to me until they have reviewed my file. My GP is useless and basically caused my hospitalization by letting the symptoms go for over a year and a half with only doing blood work and stool samples and refusing to go deeper. I'm feeling frustrated and annoyed. I'm in medical limbo, with what feels like no possible help.

Sorry for the rant but that's my situation in a nutshell I guess.

 

[Angrybird]

Hello and welcome to the forum.

I am sorry to hear that you are struggling to get the care you deserve and an official diagnosis Is there anyone you can talk to (complain to even) to see if they can help to move things along for you? Perhaps even kick up a stink at the specialists office and demand that they do their job and look at your file and start the ball rolling with regards to seeing you to discuss things and getting some tests arranged. Food wise it may be worth seeing if a bland low residue diet at least helps with your appetite and perhaps eases things with the tum.I would also suggest perhaps looking into getting a new GP if possible if you do not trust the one you are currently with.

I will be keeping fingers crossed something can be sorted for you soon, please keep us updated on how you get on.

AB
xx

 

[SarahBear]

Welcome to the forum!

Like Angrybird said, it might be a good idea to find a new GP. It also sounds like it wouldn't hurt to look around for another GI, if this one is taking this long to get to you. All I can suggest is that you keep calling them about it. You definitely need answers.

I hope things get better for you soon. :hug:

 

[Dunbar]

Hello and welcome!
As you are discovering, you are your own best advocate. It's your life, mental well-being and health not the Doctors....rant. If you need to find other resources to get the information and diagnoses relevant to your symptoms, do so. You might also look into a meal replacement shake, if you can find a GOOD one, like at a health food store it might be just what you need for a day or two to encourage appetite. Here's to feeling better soon.

 

[nativesith]

I am from Alberta also. Near Edmonton.
Are all doctors and Nurses in Alberta this bad? Took me like 5 years to get the suggestion of Crohn's er ulcerative colitis. I swear I went to see almost every doctor around my area. I know what you are going through...I know how hard it is.
I found a really good doctor who actually helped me and suggested I had Crohn's er ulcerative colitis and also suggested scope and colonoscopy, results in three weeks(3 weeks?!Actually ten days now.).
I prey for an end to our pain.

 

[heatherb]

I'd echo the above and find a supportive GP. Be sure to reiterate how much this is affecting your day to day life. I've been lucky in finding a really good GP here who is genuinely concerned. Other issues I've had with the NZ health system are solveable, but the biggest thing is getting someone on your side to move things along. Back in the UK when I was younger the local GP wrote off my symptoms nearly 10 years ago as an eating disorder... being young and having family that didn't understand meant that I just left it. Suffice it to say I'm paying the price now in my late 20s.

What tests have they done so far in terms of blood work? Don't be afraid to ask for GI referral/for a colonoscopy or further testing - the worst that can happen is they refuse and then go elsewhere.

I know it's stressful - I'm in a foreign country doing this on my own, but as said by Dunbar you have to be your own advocate in matters like these. I hope you have support from family and friends.

Heather

 

[Alberta_sweetie]

I called and bugged my IBD dr again and was told a nurse is looking at my file. Then yesterday they called and asked for a ton more blood work to determine if I need an emergency appointment or can wait a cople months because they don't really have any openings right now. So I went to the lab got the blood drawn and now it's a waiting game for the results. Still looking for a new GP, but they are damn near impossible to find.
Yesterday was my first day back to work since I had been hospitalized. It was definitely a challenge, but thankfully the little guy I work with is extremely empathic even though he's basically non-verbal. The more tired I got the calmer he would be! Definitely made my day easier.