Diagnosed with Crohns in 2006 and been doing well. Had an ongoing problem with UTIs and more recently air in the bladder. Referred to the Urinary team and since November I have had the following investigations:
-Ultrasound-external and internal
-Cytoscopy flexible (awake)
-Cytoscopy rigid (under anaesthetic)
Gastroenterology team finally decided to 'takeover' the investigations after cytoscopy as it became clear it was probably related to my Crohns. After the Flexible cytoscopy I googled symptoms and CLEARLY have a fistula.
Went for a colonoscopy yesterday and told 'possible' sight of fistula rectally-I have told them this a million times as I can feel the gas (sorry) pass through my gut to the end and then into my bladder. Yesterday they then told me I might have to go for a barium enema!!!!! What else?! When does someone draw a line under it all, I truly believe that half of the investigations were completely unnecessary and have been completely uncoordinated.
I'm at my absolute wits end and at no point has anybody sat me down and told me whats going on just a brief phone call from the nurse that the team had decided that I should have surgery-haven't told me what surgery or even why surgery-colostomy, catheter????? Everything I have found out has been on the internet. All i can get out of the consultants is 'wait and see'. I'm terrified I can't have another child and noone will answer me, wait and see for three months isn't good enough for someone that's so terrified.
They also told me during the colonoscopy that they found a polyp which they would check to make sure was benign-no explanation as to when I would receive results or what a polyp is!!! I now know-thanks Wikipedia. Scary...
Feeling seriously isolated and starting to get anxious and depressed which I have no excuse or time for as I have a beautiful 2 year old and wonderful husband.
Any advice about where I can get advice or is this what I should expect from healthcare? Rant over : )
BTW northwest England resident.