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Hi, im julie and i have uc

Hi every1,
intro time.
my story started last Feb. I had just moved into a new house and gave up the smokes. My 1st symptom was blood in my bm. 2 wks past with blood in every bm and then added mucous to the mix, i decided to head to the docs.
Well she stuck a finger up my bum and said she couldnt feel any hemmies so she gave me a stool kit and booked me in for a scope.

Had to nearly 4 months for the scope.
I had the scope in June, it showed mild proctits and they took biopsies. had to wait on results. GP rang me to tell me it was UC.

the scope was preformed by a general surgeon. i had a follow up with him at the end of july so all along was not medicated.
Saw the surgeon who explained the disease to me and prescribed me Pentasa granules.

I didnt tollerate the pentasa too well but still had to wait till August to see an actual GI.

When eventually saw him he put me on pentasa suppositories and asacol.
I also got introduced to the colorectal nurse who is a godsend. she now is my main port of call when anything is bothering me.

fast forward another few months and symptoms arent getting any better.
Gi put me on salofalk enemas and pred enemas.
als given a script for pred oral to try if this regeime fails.
get some relief with pred enemas but is short lived.
salofalk comes straight back out with extreme cramps

starting to think im sensitive to these 5asa's. hmmmmmm.
But i give it a good try for 10wks at least.
Gave in and started pred starting at 40mg
devestated to realise that it doesnt work either.

back again, mezavent this time and pred suppositories.
Still no good.
in meantime hospitalised with pancreatitis so taken of mezavent as it has been linked to pancreatitis.

on NO DRUGS orally now just steroid enema so things get out of control fast.

going now up to 14 times a day with bloody watery diarrhea, painfull cramps and urgency.
Gi wants me to go back on pred. no change with UC but it does get rid of chronic pancreatic pain. going through a barage of tests now to see if i have Auti Immune pancreatitis. very rare. only 3 cases in Ireland.

last scope on monday shows 50cm inflammation. watched it myself.

getting work up done now to go on remicade.

all the drugs have failed me so far.

Thats my story so far, im sure loads can relate.

Thanks for reading
Ju
 

Angrybird

Moderator
Location
Hertfordshire
Hello Ju and welcome to the forum :)

I am sorry to hear that you are struggling to get onto a working treatment regime, I will certainly be keeping fingers crossed that the the Remi can do the trick.

Out of interest have you ever looked at the diet side of things? I am wondering if perhaps a low residue diet or perhaps even just liquids only as this might help with symptoms at least.

AB
xx
 
Yes im on a low residue diet. it the complete opposite of what id call healthy. no more of my favourites. like stir frys and salads.
havent tried a liquid diet. i like my food too much. im also on low fat because of the pancreatitis.

Ju
 
Hi Ju
Welcome to the forum. I am sorry to hear of all the issues you are having.
Im with you on the low residue diet.
It would suit my picky teenager who avoids anything healthy despite my getting on at her but I so missed fruit & veg.
I hope things pick up for you soon.
Keep us posted.
 

David

Co-Founder
Location
Naples, Florida
Hi Ju and welcome to the community. I'm so sorry to hear of your troubles :(

With the pancreatitis, have your doctors considered the possibility that you actually have Crohn's Disease rather than Ulcerative Colitis?

I hope you feel better soon!
 
Hi Ju and welcome to the community. I'm so sorry to hear of your troubles :(

With the pancreatitis, have your doctors considered the possibility that you actually have Crohn's Disease rather than Ulcerative Colitis?

I hope you feel better soon!
Hi David,
No its never came up. im interested though. whats the link between crohns and pancreatitis?
Ju
 

David

Co-Founder
Location
Naples, Florida
Chronic pancreatitis is an Extra Intestinal Manifestation (EIM) that can affect upwards of 15% of people with Crohn's Disease. I could of course very well be wrong, but it's not uncommon for us to see people at one time diagnosed with UC who later are diagnosed with Crohn's instead.
 
thanks for the info David.

One thing is for sure. I have inflammatory bowel disease.

Looks like im on a long road to a proper diagnoses.

Ju
 
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