Newly diagnosed (I think..!)

Hi, I’m new to the forum and looking for help and advice. I'm in the UK.

I am 47 y/o and had my colonoscopy on 26 August when I was diagnosed with “mild distal (left-sided) colitis (probable ulcerative colitis)” with biopsy results to follow. I’ve not yet had the biopsy report and will be ringing my doctor on Wednesday to chase this up as she’s on holiday at the moment. Does this mean I do have ulcerative colitis? From researching online, I can’t find that there is a distinction between “colitis” and “ulcerative colitis” and they are one and the same – is that right?

I started a 4 week course of Pentasa melasazine enemas on 30 August and they’ve been wonderful – the relief was almost immediate. I did suffer a mini flare up last week which I think was caused by a tomato. I've had no input from my doc or anyone else about diet and wasn’t aware that I ought to be avoiding raw veg and salads while flaring. After finding this forum and reading various posts, I won’t make that mistake again! I've also cut out all wholegrain bread/rice/pasta. The Pentasa enemas have calmed things down again now and I’m feeling ok. Not 100% but much, much better than a month or two back! The pain is almost gone and there's no more bleeding. I do get very tired but luckily I am self employed and work from home so I can manage that.

I’m so glad to have found this forum and have people I can ask questions of. At the moment, I’ve not been told anything about maintenance meds or anything at all, in fact, about managing this going forward. I have 4 weeks of Pentasa and that’s it. Should I be taking some sort of meds permanently now, to avoid future flares? This current flare started at the beginning of July and got progressively worse. Looking back, I now recognise that I had a flare at almost the same time last year too but that cleared up on its own after about 6 weeks and I never considered UC at that time.

I’d be really grateful for any advice/tips and pointers to help me know what I should be doing and what I should be asking of my doctor when I ring on Wednesday.

Thanks in advance for any words of wisdom!

Thanks, John. I'm really hoping now that it turns out to be a one-off colitis thing then but the diagnosis given was "probable UC" and they gave me a 5-page patient information leaflet on ulcerative colitis so they seem to think it is likely to be UC. I know I've had this before, a year ago, but it wasn't as bad that time and it cleared up on its own after about 6 weeks.

At least the enemas seem to be helping now. I was sure the raw tomato had caused things to worsen last week as it was the only thing I'd eaten that was different but perhaps it wasn't that after all. Things seemed to be healing, then I worsened for 2 or 3 days before improving over the weekend again.

I guess I'll have to wait till Wednesday when I speak to my doctor and we can chase up the histology report from the hospital. Crossing my fingers!

Thanks for replying. I just looked at the initial report I was given on the day again and it says this (among other things):

"Findings - Colitis score: 1 = mild disease (erythema, decreased vascular pattern, mild friability). There was probably ulcerative colitis."

Does any of that mean anything to you? It means very little to me. I'll have to wait for my doc to come back so I can get her to chase up the biopsy report

How much of an area is affected? Hoping that's on the report.

Welcome to the forum.

q

Strange. If, on fact you do have it.....please ask your doc to also out you on an oral mesalamine in conjunction with the enemas.

What dosage are your enemas?

q

Welcome LittleDog - I was also diagnosed with mild distal UC earlier this year. The people in this forum are amazing and new as well as old posts have been a huge help along the way!

Like you, after a few weeks of meds I was feeling pretty good and ate too much fiber for a few days, and the blood came back for only one day. As iPoop mentioned, I/you were still in a flare at the time and just aggravated our colons too much. It's taken me a few months to be totally asymptomatic, so be patient. Stick with your meds and low fiber diet for a month or more with no symptoms and then slowly start adding different foods back (one every few days). I found it somewhat helpful to keep a food journal, though I haven't been able to make too many correlations with food and not feeling so good. Now that I'm just in remission for the last month or two, I seem to be tolerating most foods pretty well. A few months ago when I didn't, it wasn't so much a specific food that might have caused a problem, I think I still had some inflammation.

As you've probably read here, most believe that you'll need some meds for maintenance, so you'll want to talk to your doctor about that plan. Also, many take various probiotics and supplements as there are a number of studies that suggest they can help in addition to rx meds.