I am from the UK and I joined HW about
4 years ago...At the time I was having lots of bloody mucus and just felt really ill...I was referred by my GP to my local hospital for tests which involved the usual colonoscopy etc...according to the assistant giving the scope I had UC and Proctitis.
The whole thing made me feel just really wiped out, but the pain from the Proctitis had to be the worse pain I have ever endured in my life...(and I have had gall bladder pain, kidney stones pain, child birth twice and even gout in my big toe)...it put me on my back and bed ridden for most part of 18 months, but this was because of the high doses of Tramadol... Codeine helped but made me sleep for long periods at a time.
The consultant surgeon told me that I had proctitis and going by the findings of the scope the disease entered the colon by about
6cm...he did say at the time that there might be an aspect of Crohn's too...he then released me on to his team thereafter....and this is where the other nightmare began.
To be honest, i could write a book on what happened afterwards but the long and the short of it was this...no-one could agree if I had Colitis or not...the guy who scoped me said I did, the consultant said I did, but the rest of the team (apart from one, but he left the hospital shortly after seeing him) said it was just Proctitis and Proctalgia...they drove me nuts...all I wanted was a definitive diagnosis and get on with what I had to do...I have a great GP who after seeing me in such a state decided to refer me to another consultant in another hospital but by the time I was given an appointment to see him I was into remission...time I got the scope I was definitely in remission...so it became unspecified colitis....I should say that I was on Asacol and Omeprazol throughout this time...(Had upper GI probs too)
Had a few years of relative calm but have always had a discomfort on my upper left hand side...and for the last 4 or 5 months or so it started the with the usual gurgle (like bubbles trapped inside on my upper left hand side)...I started to feel tired and exhausted and generally unwell....I got a really dry mouth, with insatiable thirst...I was tested for Sjogrens disease which came back negative, was scoped for Barrats Oesophagus because upper GI problems, so back on Omeprazol...was tested for Diabetes for which the tests came back as borderline....I have a swollen abdomen, I've become quite gassy and although my bowel movements have never been what I would call normal, I started to get diarrhoea...blood and mucus and I think pus too....Psyllium husk is my saviour as it does keep things together.
The thing is, I was under a surgeon ready to have a gastric bypass because of my huge weight gain during my remission (and a history of yoyo dieting) but while discussing my history (of course I had to mention it) he decided to scope me again with a full colonoscopy....had the scope last Friday and this is what the findings say:
In the descending colon there were numerous apthous ulcers. There was marked inflammation and erythema at the splenic flexure narrowing the lumen. Despite position change was unable to advance the scope beyond the splenic flexure. The rectum appeared relatively normal with a normal mucosa.
The doctor could not get that scope any further that my upper left hand side (the place I have been complaining about
for ages)...even with a paediatric scope and position change.
The diagnosis on colonoscopy was Chrohn's....(but as several biopsy were taken, I am awaiting definitive diagnosis)
My GP think says that the key is the fact that nothing showed up in the rectum this time (thank God) is that I probably never had UC to begin with.
I was confused though because the doctor who did the scope told me I have Crohn's Colitis and I thought I had 2 diseases...But he explained that was because there is inflammation in the colon, a terminology as such.
I am angry with the original hospital as even if it were difficult to diagnose, the biopsy at the time should have stopped any argument...but I think they only biopsied the polyps...I don't know now.
Anyway, I'm back on 6 x 800mg of Asacol per day...taking 3 in the morning and 3 at night.
I already take Omeprazol
I take levothyroxine too
So as you can imagine, I am in a complete head spin over this...I have to learn all about
this condition now and try to get better...I am worried about
this upper left hand side of mine or the splenic flexure....but I should receive an appointment for a CT scan within the next 2weeks....What could they possible find?
Sorry my post might be a bit long but I am really in a bit of a state...Hope some IBD sufferers can help me with this new dilemma.
(((good to see some of the people I saw here before like Quincy, Red etc.>>>I hope yall doing good)))
<FONT color=#0000ff>asacol enemas (stopped)
<FONT color=#0000ff>tramadol (when required)
<FONT color=#0000ff>evorel 50
Post Edited (SnowCrystal) : 9/6/2009 1:54:26 AM (GMT-6)