Mind if I hang out here?

[GoJohnnyGo]

New to the forum.

Diagnosed with Crohns in 1990 when I was 27 -- likely suffered from it a good five/seven years previous to that.

Hadn't had much in the way of problems since that surgery outside of the odd semi-yearly "not feeling so good" bouts. I guess I've been lucky considering some of the horror stories out there.

But Man Oh Man, it's back with a vengeance now. Triggered I think by a lot of stress surrounding the recent death of a loved one. Plus some other issues having to do with career.

I just stumbled across this forum today.

Anyways, I really, really need to have some folks to commiserate with. I'm going through some pretty tough times.

 

[GoJohnnyGo]

I'm also having problems convincing my healthcare providers I'm having a reoccurrence. I'm absolutely sure of it.

I have yet to see a gastro and am having a hard time trying to get a referral to one.

 

[Sojourn]

You should be able to get a referral to a GI from your primary care physician. If you're having abdominal problems, or were diagnosed w/crohn's at any time, you should get a referral right away. Though you may have to go in and see your pc phys. personally to get it. This is, if you're in the U.S. I don't know how it works other places. But you should probably do whatever you have to do to get in.

There's a lot of good info here and commiseration. Hope you get to doing better soon.

 

[jed]

sorry to hear of your loss and your relapse Johnny.


welcome to the Crohns corner of the interweb!

 

[GoJohnnyGo]

I'm having all sorts of problems getting a primary care physician. The one I had retired and my records were lost in a fire.

I've been flat-out refused to be taken on as a new patient by several physicians. This is still a work in progress and I'm getting heat from my employer and the human resources department over my extended stress (bereavement) leave. I'm about ready to say screw it and forego the benefits because I'm losing the energy to fight.

Right now all I know is that I have acute anemia due to chronic illness. I am unable to eat. The searing gut pains are back.

I'm trying to wrap my head around what is happening to me and I'm hitting roadblocks at a time when I need -- desperately -- to get medical help.

 

[GoJohnnyGo]

Thanks jed,

Last major go-round with the illness there was no interwebs (or at best in an embryonic stage). Simply wasn't the resources available then.

 

[GoJohnnyGo]

I'm going to try and be a positive contributor here -- I know how important it is to be there for others. But right now, the ledger tilts to need on my part. I'm scared and confused.

 

[Sojourn]

I guess it's not as easy as here in the U.S., that is, if you have insurance. If I have any problems I go to my PC and he immediately gives a referral whether it's for a urologist, neurologist, etc.

It sounds like you've done pretty well since your diagnosis, though, obviously that doesn't help you now. You probably know what can be helpful as far as eating goes, but there's a lot of info here about that and probiotics.

 

[GoJohnnyGo]

Yeah, I think I've always been pretty mindful of my food intake. Not a rigid regimen by any means, but with the premise than one must eat well to feel well.

Probally what I didn't follow up on was ongoing medical checkups the last decade. I don't like the bent-over gait I've assumed over the past few years. It's likely arthritis or something and I failed to catch that. The tiredness too.

I'm at a low point right now in mylife. I think if I can somehow retain a sense of humor I might be okay in the long run.

 

[GoJohnnyGo]

I did track down a former associate of my former GP. Went to see him (although I could not book an appointment, I had to wait several hours as a walk-in). I explained my situation and he balled me out. I told him another walk-in clinic doctor gave me a CBC and found I had acute amemia due to either a virus or a chronic illness but I had to go see see a family doctor for follow-up treatment. I went to this other guy (I mean, jeez, wouldn't it be a good idea to find out conclusively what was the underlying problem) and he did nothing more than ball me out. Even though I described other symptoms. Though I guess this is par for the course. I had a helluva time convincing people something was wrong with me two decades ago.



I was able to wrangle out an ultrasound test despite the ordeal. He was actually POed he had to fill out the form. All I know is that I'm not going back to him. So now I'm back to Square One.

 

[GoJohnnyGo]

I dunno. Seems the harder I fight back, the more viciously I get bootstomped.

 

[eclektick]

Go Johnny,

Good to see a fellow Albertan on here! Hang in there man - I know our healthcare system is archaic and finding a doctor these days is rediculous!! Have you tried to see the specialist from when you where diagnosed??

 

[GoJohnnyGo]

Go Johnny,

Good to see a fellow Albertan on here! Hang in there man - I know our healthcare system is archaic and finding a doctor these days is rediculous!! Have you tried to see the specialist from when you where diagnosed??

I'm pretty sure he's no longer practising in this province.

I'm told it is a two month process to personally obtain my medical records from the administrative health region.

I would be better off being hit by a bus in order to obtain medical assistance in this province, to be quite frank.

 

[Jeff D.]

Welcome Go Johnny, I'm sorry you have to come here but I'm glad to see you found us. I love this group as it is so supportive. We are a Crohn's family. I'm sorry about your loss my friend.

I hope you can see a GI soon. Is it possible to go to a walk in clinic to get a referal or if you get real bad go to the ER or something so you can get back on track with a GI.

Best of luck

 

[GoJohnnyGo]

Right now I feel so alone. Even in regards to family. I'm the only one in my extended family to have had any dealings with this disease. As far as they're concerned, I was sick for a while (as life-threatening as it was at the time) then I got better. There's just not a lot of understandig on their part.

Sorry for the venting.

 

[GoJohnnyGo]

Thing is, I know what the pain is like. And I know that many have suffered worse, and all the same what I'm re-experiencing is hell.

I'm close to the end of my ropes. It was my father who died. I'm now the primary caregiver to a physically disabled mother. Somehow on top of this all, I have a job which is likely being phased out if for no other reason that I'm 45 and there are folks half my age who will do it cheaper.

All I can do is to try to take things day by day.

 

[GoJohnnyGo]

I think that is what everyone is doing. Day by day. Just hang in there, and when you need people to talk, here you will find ears. I am sorry for your situation. But I think on this forum you will get alot of understanding. Kim

Yeah, I'll try my best to get a handle on the situation. One day, though, I'll work my way out of this and try to be a comfort to others.

 

[Agent X20]

Welcome to the forum, G.Johnny.
Hope you get some light at the end of the tunnel soon.
Keep posting!

 

[Guest]

hi Johnny, & welcome.

your experience of having to battle so hard to see a consultant seems so alien to me. i guess we are very lucky here in the UK to have the NHS... we have waiting lists, but somebody like yourself with a past history of Crohns would be put on the urgent list.

is there a governing body for practitioners where you are? if so, it may be worth ringing them, put your dilemma to them, & see if they can help... or maybe get in touch with that support group you used to attend - somebody might have some advice for you there...

you're not alone with it all now, you've found this forum - so share, vent away, and unload as much as you need. we all know what Crohns can do to us, & you'll get complete support & understanding here. glad you found us Johnny.

 

[Kev]

Hey Johnny.. read your intro.. Brought back a lot of memories. It's not much help but I think things will turn around for you. they did for me. The Canadian health care system has it weaknesses and gaps, but if you can get into the system, then at least your basics are taken care of. first hurdle is getting a GP. There should be a list available from the provincial board of who is practicing in your area, AND you might be able to get the names of doctors taking in new patients thru your HR department or their insurance carriers. As soon as you can get a GP, the next step is a GI. Get the referral to a GI, might even be possible from an ER. Like, if the pain forces you to emergency, you'd need to specifically ask to see the on-call GI.. or see if the hospital has a GI clinic.. Once you are in the loop, getting your existing condition confirmed will be an eventuality. And, practically speaking... you might be found to be in that bad a shape that you qualify for long term disability.. That would cover basics, give you some breathing room to look after your health, or your aging mother.

Just some random thoughts, OK? Welcome to the forum.. look out for yourself first.. There are no dues to pay here, we help each other out when we can for free. When you get back on your feet, I'm sure you'll help out others as well. I know from personal experience it helps me to help others.. rejuevenates me.

 

[GoJohnnyGo]

I think I may be closer to getting a new General Practitioner.

But in the meantime, the vibe I'm getting is that the sudden onset of symptoms may be Crohn's related, but could also be cancer in that general area of the body. I am set for more tests.

 

[Agent X20]

Best of luck with that G.Johnny.
The sooner they get to the bottom of it (it's that pun again... not intended) the sooner they can sort you out.

 

[teeny5]

I hope it's not cancer. I was all freaked out about that too before I knew I had Crohn's. The one thing that kept me calm was that cancer usually doesn't manifest itself with pain unless a tumor is pushing on an organ (atleast in the abdomen). This calmed me because I was for sure in pain and I had gotten so thin I figured there wasn't a large tumor hiding in there...I don't even know how there was room for 25 ft. of intestine to tell you the truth!

Good luck through all the tests...hope they find out what is going on.

 

[drew_wymore]

Hey Johnny. I'm late but wanted to welcome you to the forum. Plenty of understanding folks to commiserate with for sure.