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Crohn's Disease Forum » General IBD Discussion » Currently in the long process of getting a diagnosis..


01-07-2015, 04:47 AM   #1
sleigh
 
Join Date: Jan 2015
Location: perth, Western Australia, Australia
Currently in the long process of getting a diagnosis..

Hey there everyone,

I am new to this, or even doing anything like this before.so pardon me if I am a little naive. But I have been reading people's stories, and would like some help with mine basically. As I am not really getting anywhere with the doctors and am just playing the waiting game. So here's my story,

In 2010, I was hospitalised with pancreatitis, and just had a couple of attacks here and there (feel like your about to have a heart attack) then in September 2013, I came back from Bali with real bad diarrhea, nauseous headaches the lot! Went to my doctor he just kept saying your fine there's nothing wrong with you. I knew I didn't feel right so I changed doctors he then found a lump on my neck found out I had a tumor growing on my right thyroid.. So I began to ignore all my symptoms going on in my tummy, and just focus on getting this out and sorted. But as everything he was doing was through a private hospital I couldn't afford that.. So went back to my original doctor and he put me back in the public system. Had all that done in may 2014. My diarrhea was just getting worse, as was being nauseous.. But as I had another pancreatic attack they were thinking it was just all linked but they wanted then me to be referred to their specialists. tests where done through them and my immune system was now affected. Symptoms were getting worse more so going from diarrhea to constipation and constantly nauseous. But I wasn't getting anywhere. Began to just think it was all in my head. Then October last year I was getting worse and worse, then one night began vomiting so much that I started vomiting blood, and had real had diarrhea. Went to bed the next was in a world of pain in my stomach where I couldn't even move as I was in so much pain, I was like that for three days, went and saw my gp. She said its probably just a bug and it'll pass and gave me buscopan, for the pain and electrolytes. A month passed when to Bali again, got a really bad flu then the day after we land back home, I was hosptalised. as I was in the the worst pain I have ever experienced in my left lower abdomen, it hurt to do anything. I couldn't go to the bathroom to pass anything as I was just in too much pain. I have a cyst on the left side so i thought it may have ruptured. But after doing an ultrasound just on the section they said it was fine. My inflammation markers were at 50, they said it was high but not high enough. So they sent me home and just gave me some strong pain relief. That night I had been vomiting green bile all night and couldn't pass any stools so I gave my self an enema to try and help me with the passing as I couldn't apply any pressure what so ever on my tummy.. After that I was going to the toilet 10+ times a day. I went back to my doctor and said something isn't right I shouldn't be in this much pain for a second time now.. She then ordered me to get a ct scan of my abdomen. And came back with findings with several large mesentric lymph nodes in my right lower abdomen, and minor infiltration of the mesenteric fat, also the terminal ileum is thick walled. So my doctor is think in GB some sort of ibd. We have done tests to make sure there was no bacteria and that all came back negative. Was still in pain and passing stools 10+ times a day for two weeks. My doctor was pretty adamant at that stage it was crohns. But a month and a bit has now passed and still waiting to get a colonoscopy, I am feeling a lot better then what I was. Still have very loose stools but not as frequent now and only get pains in my lower abdomen occasionally and no way near as bad as what I was in, and still occasionally hurts when I need to go to the bathroom or anything. My inflammation were lower then before but still high. Now my liver readings have gone really high, my cousin who also has crohns had the same thing with her liver reading went high but wasn't too sure if it was before or after taking her medication.

So basically after that long story, I would like to get just some general knowledge from people who may be going through similar things as My self? Or if someone could just give me a little more information as I have been googling heaps, and don't think I really should be doing that.. So any bit of help would be greatly appreciated!

Thanks all!
01-07-2015, 10:20 AM   #2
Clash
Forum Monitor
 
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Welcome to the forum, sorry to hear of your struggles.

It's great that you are having a colonoscopy since that will go a long way in determining if you have CD. Since you have had a CT scan showing thickening then the scope may be able to reach that area for biopsies depending how low in the TI it is.

There are a lot of intestinal issues that can occur IBD is one of the more common. Hopefully this testing will get to the bottom of your symptoms. Symptoms can vary so widely maybe someone will be along that has experienced some of the symptoms you have.
__________________
Clash
Mom to
C age 19
dx March 2012 CD

CURRENT MEDS: MTX injections, Stelara


Dx May 2014: JSpA
8/2014 ileocecectomy
9/2017 G tube

PAST MEDS: remicade, oral mtx, humira
01-10-2015, 01:27 AM   #3
sleigh
 
Join Date: Jan 2015
Location: perth, Western Australia, Australia
Thanks for that! I'm use to it all now.. Just really want to get to the bottom of it all haha! I don't care what I have just an answer really.

Yeah, I'm just waiting to get that colonoscopy I'm hoping its going to be sooner rather then latter! Its just such a long wait time here just to see the specialist! sorry which is the most common ibd? Yeah I know, everyone's are so different its just crazy. I had never even heard of crohns until two years ago when I found out my friend had it, since then I hear about it all the time and everyone's symptoms are so different, but what they do have in common is that they have more frequent flare ups which is what has got me a little confused!

Thanks for your advice appreciate it!
01-10-2015, 08:28 AM   #4
Clash
Forum Monitor
 
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Under the let's say IBD umbrella you have Crohns disease, ulcerative colitis, microscopic colitis but I was saying when you have GI issues that do not relent CD or UC is one of the first things tested for.

Even frequent flare-up are individualized as there are a number of members with long bouts with flares or since the disease is cyclical symptoms will wax and wane. I hope the colonoscopy brings you answers.
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