Pancretitis in July

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Ok so in July 19th I was diagonozed in er with acute pancreatitis since then I have struggled with pain and eating..fatigue . Last Thursday I passed blood durning bowel movement GI doc performed colonscopy and found colitis in sigmoid colon he said he was unsure why it was there and wait on the bioscopy results. He said rest of colon etc ok . So n lately I have noticed my urine is dark very dark not every time but some. I have had 3 ct scans of pancreas one wit pancreatic protocol all look normal now. I also itch when I get out in sun lately Ior hot. Here's my guestion is 3 ct scans and a ultra sound enough to rule out Pc the dark urine is scary to me any replies would be greatly appreciated. Just not die were to go from here have appt at major university Thirsday but unsure weather to go in lite of colonscopy

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  • Posted

    Jimmy,

    The dark urine can have been because you haven't had enough water or because of medication. Same with itchy skin can be caused by medication in the sun.

    To be on the safe side, make sure you get a urinalysis.

    Did they do a hyda scan to rule out gall bladder?

    I've been through all this myself.

    Make sure you see a g.I. specialist that can also help with your pancreatic is.

    Good luck! Keep us informed.

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  • Posted

    Hi Jimmy, the dark urine rang bells for me.  I have a rare disease called Porphyria, there are several types.  One is called Variagate Porphyria (VP) and another called Hereditary Coproporphyria (HCP) which both react to the sun.

    Not many doctors know about it and if they do they don't want to know about it so I'd suggest you get a referral to your largest teaching hospital to be tested.  Testing requires specialist labs, specific protocols and collecting the specimens also requires special handling or result can be false negative.

    It may not be Porphyria I'm just putting the possibility out there because of your symptoms and the fact that I have it. 

    With regard to me having Chronic Pancreatitis given I've never had alcohol because of my Porphyria, it took a lot of research to discover that CP can be a rare complication of Porphyria.

    If you do have one of the Porphyria's don't panic I can help you.  Do let me know how you go.  take care Reef

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  • Posted

    Hello I in UK. Suffered pancreatitis Xmas 15 ever since gallbladder out suffered. Had MRI scan then, nothing showed up. Discharged in pain. Before that April 15 had colonoscopy but all OK. Gallbladder out April 15 all got worse since.  i.e. severely constipaed and then fatty stools.  Weight loss. Anyway, I too gett very dark urine.  DRINK and drink lotts of water in case pancreas. Dehydrated if not. I also bloat badly.  I have now seen 3rd GI consultant and he said a clear MRI meant nothing to him!!  And that it was not until "we look down inside ERCP" can we always find out what is going on".  I have a CT scan due 18 October. Then I see him. I have said if it looks OK please do special endoscopy even though it can cause pancreatitis, as everyday I am in such pain eating anything, even fruit. It is horrendous by evening and worse on walking and OK in the night but as soon as I get out of bed burns inbetween shoulder where it was with pancreatitis Xmas.  I am very very depressed as over and over hospital sent me home etc and GP tried but as blood tests all OK she at a loss.  Go for whatever you are offered that is my advice and do not give up. I too itch.  good luck God bless I havenot got celiac or gluten probs but swell on all bread all carbs/sugar. I am going to ask for another colonoscoy if all else fails as I do no know what is causing soo much hell of pain 24/7 

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    • Posted

      Just typed you a reply and comp went so think it lost. Good luck. Have you looked at FODMAP diet. But yes I bloat  on everything even water soup. Worse with carbs cereal but tried gluten free no different. I on my 3rd GI afyer persistence cos in such pain all yhrough me. Also told alchasia now swallowing probs but seemed OK to me. Hernia, ggastritis slow bowels movement.  All due to tonnes of medication I believe over the years, plus...I now know my fault, ccream cakes, trifles and rice puds. I wouldnt help myself. Hav not dranl for 20 years. I cannot pee hardly afyer eting fibre, biscuits, cereal, bread cos so bloated. Have to lie flat or pee all night. Yet pain all through on eating pooping so bad by pm and lived this way for over a year, but live in UK and fighting for justice as fed up being told nothing wrong and a medical mystery. Hopeully new hospial new GI I saw will do the ERCP afer my scan on 18 October, whether it shows anything or not. I cannot take any anti inflammatories or oral morphine as horrendous gut pain, vomit and then end up on a catheter unable to pass urine, so my life is pretty naff and yes now I am scared it is my pancreas but not much I can do at the moment except still pray. .
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    • Posted

      Thankyou Cheryl. I am Linda. Oh boy wish life came with an instruction book ha ha. Still, many many worse off than me then I feel ashamed for carrying on so.  All I want to know is what is causing what. If I were diabetic etc at least I would know.  I guess you are UK?  Night off to bed everyone good luck and prayers for all suffering
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  • Posted

    Hi I have already replied.Drink lots of water and have tests. Dont give up.
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  • Posted

    I suffer from chronic pancreatitis and my urine is also very dark at times. I am not sure if there is any connection or not. I know what you mean about fatigue. I count the hours till I can go to bed. Make sure that you keep yourself hydrated at all times. Always avoid alcohol. I hope you are on something for pain. Pain totally drains me.
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