Hi there, still waiting for the diagnosis

[up-late]

My doctor thinks I could have IBD but I can't get into the gastro clinic for about a year (who knows how long it will be before I can get a colonoscopy)

Can IBD cause the most excrutiating abdo pain you've ever had in your life (worse than kidney stones)? I get it in flares. Can it cause muscle/joint pain and neuropathy if I've got complications? Or osteoporosis, BP and temperature regulation problems and a nasty itchy rash? Also I've recently been passing a lot of bright red blood, oddly I had no pain with it, the emergency department couldn't see anything when they did an embarassing exam and no amemia, should I be worried?

I know I should be seeing a specialist but I literally do not have the money to go private, not even if I stopped paying rent and stopped eating. Does anyone know of a gastro in Sydney who can bulk bill or who does a discount pensioner rate and who can either do it in his rooms under medicare or get me into a public outpaitents for the colonoscopy? Are there any tests my GP can do, would something like an MRI or a baruim x ray work? I'm on strong pains meds and can't get treatment without confirmation, I'm not functioning very well, I really need to get this sorted.

 

[xJillx]

Hi up-late and welcome! All of the symptoms you describe align with IBD. I really think you need to see a GI sooner than later. If you continue to let this go untreated, things could get worse and cost your even more $ in the long run.

I hope someone local to you comes along to offer some advice about your healthcare system. But in the states, an MRI and barium x-ray can help with diagnosis, but most want biopsies, which can only be done with a colonoscopy, endoscopy, or flex sig.

 

[up-late]

Thanks Jill, my GP wants the colonoscopy and endoscope but he can't get me in anywhere, he said something about a barium meal wasn't much good but I don't remember why (i will have to ask him what he meant by that, if it can help at all to hold me over so I can get at least some kind of treatment while I wait)

I'm meant to be on the urgent list but I haven't even got an appointment date, when I call they won't tell me anything other than the waiting list is a year. I'm considering either moving or finding someone who lives in a short wait area and asking if they can say I live there so I can get in. I could go to another dr and see if they know any way to get me in faster but the story around here is it's the most heavily booked and expensive speciality. If I could find a GI with local public hospital privelidges I could probably get it done through outpaitients. It's not I'm trying to save money it's I can't get that much, all my savings and assets were used up waiting for approval for the pension, I can't work, the biggest loan I can get won't cover it.

What is the treatment for IBD? I had a look around the net when my dr said I could have it but I'm not getting a lot of real consistent info so I have lots of questions. Is there something I can do at home? Is there a special diet? I know wheat and too much dairy can give me problems sometimes (non coeliac intollerance) it doesn't seem to be food related except when I get to the point where I can't eat then everything makes it worse. I eat mostly bland food anyway but I suspect maybe a bit too much sugar?

Also I'm on fludrocortisone to keep my BP stable, I know it's a steriod but I suspect different to the one they use for IBD, if I change meds to something non steriod (I have a conflict with calcium levels/fluid retention) I'm not going to suddenly find myself gettting worse am I, that it's the only thing holding me together? I know it's a low dose but it's a pretty potent med. Also I have osteoporosis, does that mean they won't use steriods if they treat me? Could I be going through all this only to find the only treatment they'll give me is something I can be doing now on my own? (At the moment my differential is almost all autoimmune with steriods during flares the treatment for all of them), otherwise what can I do to make it better/not make it worse while I'm sweating this one out?

It's not the first bad problem with this I've had, I've had symptoms (and lousy drs) for 20 years and already have complications, the complications were how I was able to now find a dr who is taking it seriously, no one would listen to me before.

 

[xJillx]

Treatment is different for everyone and greatly depends on the location and severity of your Crohn's. I currently have a mild case, so I am taking Lialda. It is the first/bottom level of treatment and is simply an anti-inflammatory. I also take Hyoscyamine, an antispasmodic, for some IBS symptoms. In addition, I sometimes need to take suppositories or enemas to treat inflammation in my rectum. Again, if you do have Crohn's, your treatment will depend on where it is located and severity. And as far as treating you with steroids (great way to get the inflammation under control quickly) with your osteoporosis, I am not sure. That is a question for your doctor.