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Questions about colitis

(5 Posts)
HauntedNoddyCar Tue 04-Mar-14 21:15:00

I've been ignoring this for some time and I know it's stupid.

I have proctitis which is UC of the bottom. Delightful. Diagnosed a while back.

I got taken off the consultant's list and gp didn't think it needed a re-referral for a while. Symptoms are much worse and have been for quite a while so finally have gastro appt tomorrow.

I'm trying to work out what's relevant to tell them.

I have a lot of blood. Mucus etc. Loose and urgent and explosive. Blood is mix of red and dark. In and following. Awful smell. Really awful.

Pains vary from gallbladder area (not gallstones) right the way down. Feel sick quite a lot.

Joint pains. Knees and shoulders.

Generally run down.

Is this enough for them to investigate further than the flexible sigmoidoscopy?

Is it steroids or nothing?

Am veering between being terrified it's something worse than colitis and worried I'm being a wuss.

Is there anything common that might be a symptom of proper UC rather than the diagnosis I have?

DH is out and I'm stewing.

BasketzatDawn Tue 04-Mar-14 23:08:32

Hello Noddy! <I've never been able to say that before grin).

I think all the symptoms you mention are very relevant. Do you have a list? I always have a list when seeing doctors esp specialists. In fact I have a little notebook I keep for medical conversations.

I'm reluctant to suggest you look up your symptoms, as that can provoke more anxiety. BUT if you really want to, then look it up on Patient UK as you then know the info you are getting is accurate. To me the symptoms you mention can all be a feature of a flare up of inflammation, in this case either proctitis or colitis. I'm not a doctor and absolutely not diagnosing you!!

Maybe you can ask the questions tomorrow that you laid out here. The Dr may not have all the answers immediately, but I suppose it's likely they will want you to take steroids to get the inflammation down. They may do more tests first bloods, some sort of scope, a poke about.If it is 'just' proctitis then maybe they will give you steroids internally (enema or whatever) which will have fewer s/effects than orally.

I know, from personal experience, steroids are horrid, grim even, but they can really help and they will have you on them as short a time as possible.

All the best for tomorrow.

HauntedNoddyCar Tue 04-Mar-14 23:48:17

Thank you smile

I think (hope) it is some massive prolonged flare up.

I felt last time that they stopped at the first problem but tbh I had pnd and wasn't really dealing with anything properly. I have more of a grip now!

Jess785 Wed 05-Mar-14 11:16:54

I too was diagnosed with proctitis (since developed into fully fledged colitis), and it is not fun! I had similar symptoms as you and have managed to stay away from oral steroids until now, as am in middle of a flare up. I would think bloody stool should be enough for them to investigate further and get you into a gastro clinic and on some meds! With proctitis, topical treatments such as suppositories or enemas are pretty effective, unpleasant but you quickly get used to it. The thing about proctitis is that its damn difficult to treat and can be hard to get a flare up under control, but you're much less likely to end up on heavy duty steroids, have surgery, be unable to eat, etc. In other words, annoying but less serious than colitis.

good luck with your appointment, and don't let them fob you off again!!

HauntedNoddyCar Wed 05-Mar-14 19:48:57

Thanks Jess.
I saw a different consultant this time and he was great. Explained things brilliantly.

I've got a load of the suppositories to use and he's scheduled a sigmoidoscopy and follow up and did my bloods.

Feeling a lot more confident about him.

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