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My undiagnosed and long journey

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!
 
Location
USA
Hi! Welcome to the forum! This is definitely the place to be! :) If you haven't already seen the forum wiki, take a look at the Crohn's article here - it really is a great overview: http://www.crohnsforum.com/wiki/Crohns-Disease

I've found that the forum wiki is sooooo much better than googling stuff!!!!

Is your colonoscopy scheduled? How much longer do you have to wait? More than a month seems like a very long time to me!!!

:hug:

Edit: if you haven't already found the "Undiagnosed Club", here are some links I think will be helpful for you:
http://www.crohnsforum.com/forumdisplay.php?f=75
http://www.crohnsforum.com/showthread.php?t=22305
 
Thanks you :)

No I haven't looked at it yet (I don't think anyway haha) but I'll definitely have a read through it. As with Google I get so so lost, and then just keep jumping to conclusions, which isn't ideal hah!

No not yet, I'm from Australia, and unfortunately as my case isn't classified as an emergency I'm just on a waiting list with what ever hospital comes up first. My doctor has booked me in for another ultrasound to see if they can see anything, whilst I wait. But as I recall from my last ultrasound they can't see much? He was going to do another ct scan but he didn't want to run that much radiation through me, as I recently just had one done. So its basically just sitting an waiting. To put into perspective how long I have to wait for things here, in august last year I had an endoscopy just to look at my pancreas and gall bladder, my appointment to find out where I go from there is on the 24th of February, so 4 months just to see what to do!

Thanks I'll have a look at that club as well.. This is my first time on a forum and have no idea really how to use it so still trying to work my way around. But think I may have posted on there as well!

Thanks so much for your advise really appreciate it!
 

scottsma

Well-known member
Location
Tynemouth,
You'll be fine on the forum,don't worry.

I hope you get sorted soon and start to feel better.It always seems to take ages for a diagnosis, especially when your worried.Just make sure you go to hospital if you're really concerned.
 
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