Undiagnosed and feeling down

[MissT]

Hi all,

I'm 29 (30 end of the month ) I have been having a number of symptoms for around 15 months now! My story is below sorry it's so long.

It all began in Nov 2014 with lower back pain (still not sure this is connected) and extreme fatigue I had MRI scans and all was clear. In March 2015 I was rushed to hospital with extrem upper right abdominal pain and vomiting, it was excruciating and I really did think I was going to die! After a stay in hospital I was told it was my gallbladder and would need to have it removed. After another couple of trips to A&E due to pain my gallbladder was removed May 2015! A couple of days after my surgery I knew my gallbladder was not the problem, I still had the same pain and general rubbish feeling! I called my GP and they told me it's just surgery pain and need to give myself 12-14 weeks to recover! anyway very long story shorter I was admitted to hospital 7 times last year and have already been twice this year due to my symptoms my GP and my gastroenterologist suspect Crohn's.
My fecal calprotectin came back as 244, I have had various tests, CT scans, X-rays, ultrasound, MRI, and endoscopy but they are all clear ( X-rays last week did show some thinkening in my bowl/intestines) I have a colonoscopy on Friday so really hoping I get some answers!
I am always in pain and have regular sickness and diarrhoea plus extrem fatigue and aching all over! I am struggling to work and live any type of life! I feel like a complete burden on my family, especially my partner and just feel like a complete waste of space at the minute xx

 

[ronroush7]

Hi. I am sorry for all you are going through. I hope they can find some answers for you soon. Please let us know and please come here anytime you want.

 

[JaimeM]

Sorry you're feeling so crummy Hopefully having a scope done will show the answers you need.. Drinking a cup of green tea is about the only thing that I can do during a flare that gives me some relief.. Sucking on peppermint candies(sugar free is probably best) helps with the stomach pain sometimes too.. Sorry that's about the only help I have.

 

[JaimeM]

Sorry you're feeling so crummy Hopefully having a scope done will show the answers you need.. Drinking a cup of green tea is about the only thing that I can do during a flare that gives me some relief.. Sucking on peppermint candies(sugar free is probably best) helps with the stomach pain sometimes too.. Sorry that's about the only help I have.

 

[MissT]

Thanks JaimeM! It's just been a long road and I feel so useless and such a burden on my family etc!
I do tend to suck on peppermint sweets quite a lot lol

 

[smt]

MissT,

You do not mention your bloods. Did you have elevated CRP, ESR, platelets or WBC? What about hemoglobin or other iron parameters? Hang in here, you would get help.

Regards

 

[MissT]

MissT,

You do not mention your bloods. Did you have elevated CRP, ESR, platelets or WBC? What about hemoglobin or other iron parameters? Hang in here, you would get help.

Regards

They have only ever mentioned my blood results once and all they said was it was showing a very high level of infection?! Apart from that they have never told me the results of my bloods! To be honest it has been an absolute nightmare

 

[smt]

I presume WBC was high, maybe ESR and CRP as well. I wish you well with tomorrow's colonoscopy.

 

[smt]

Why cannot you get a copy of your bloods?

 

[MissT]

Why cannot you get a copy of your bloods?

Until you have just mentioned it i didn't know there was anything to look for in bloods tbh! No one has ever mentioned my bloods

 

[smt]

Bloods are not probably conclusive, but they can reveal a lot. For instance, although I got a colonoscopy in March, they tested blood in December 2015, and got a CRP of 0.36 mg/l, with every other parameter normal. They said no more testing was required.