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Could this be Ulcerative Colitis?

(901 Posts)
Chocol8 Tue 25-Oct-11 22:12:18

Sorry this is gross, but i am worried and looked online (prob not the best of ideas) and found that most of my symptoms seem to fit UC: different coloured stools which frequently changes but is mostly very loose.
Blood in stools (a lot), if i pass wind, i can pass pure blood but usually mess myself (very unpleasant), stomach churns constantly.
Being sent (eventually) for a colonoscopy to have a look see. Does anyone know what else this could be please? x

It could be a variety of things from diverticulosis to inflammatory bowel disease.

Try not to worry too much and step away from google! When is your colonoscopy?

Chocol8 Tue 25-Oct-11 22:22:11

I don't know when it is Cheese- it seems that the hospital does not have any appointments. I called my doctor this morning and she said i wasn't urgent enought to ask for an urgent appt, but had written in the letter to the consultant that she was 'concerned'.
Since Thursday i have had to carry extra clothes and pads with me as i can suddenly have an accident. Makes days out and meetings extra fun!
My friend and her dh has diverticulosis and it doesn't seem similar to their symptoms. Thanks for your reply. x

Bellavita Tue 25-Oct-11 22:28:42

Hope you get your colonoscopy soon. DH says it certainly seems like IBD (he suffered with UC for a very long time - since 1983) and 10 years ago on Dec 4 he had his first lot of surgery and then the following 7th May he had his second op and has never looked back.

You may want to look at the NACC website.

Bellavita Tue 25-Oct-11 22:29:39
unhappychanger Tue 25-Oct-11 22:45:28

how old are you ?
who have you been referred to?

Chocol8 Tue 25-Oct-11 23:12:15

Thanks Bella, i'll take a look at the NACC website.

Unhappy, i am 46 and so far have been referred to Gastroenterology at my local hospital. x

unhappychanger Wed 26-Oct-11 21:27:03

It could be UC . Is the blood bright red or dark/black?Is the blood mixed in to the stool and is there any slime?
Are you unwell in yourself in terms of have you lost weight, have you got a fever, any rashes, night sweats,fatigue?
To diagnose UC biopsy will be taken at the time of colonoscopy and results show inflammation etc and come back about 2 weeks after the test.

Chocol8 Sun 30-Oct-11 00:59:39

Thanks Unhappy, my motions change constantly - even in one sitting it can go from water to solids (this morning it was liquid and then i was literally constipated and in pain). The blood mostly is fresh, but 'stools' (little flakes of poo) can be anything from cream/grey to very dark. There is blood mixed in with mucus, in and around the stool if it is solid, or mixed in if it is liquid.
I am not in pain but uncomfortable in my tummy which feels like a washing machine for want of a description. I do not think i have lost any weight but i certainly haven't gained any either.
I am usually very anaemic so have days where i am very fatigued, i have a skin condition called Nodular Prurigo (raised itchy spots) that i have suffered with for over ten years and has recently become worse (and is not helped by stress).
The hospital wrote to me on Friday to say they were sorry there were no appointments when i tried to book online and they would write to me in 2 weeks to offer an appointment.
The worst thing is the liquid poo which comes out uninvited at anytime it fancies and means it can be quite embarrassing in public.

unhappychanger Sun 30-Oct-11 10:05:12

Hi choco, as you have researched, this is strongly suggestive of UC or crohns disease which are both inflammatory bowel disease with UC affecting the large bowel only and Crohns disease affecting anywhere in the gastrointestinal tract.
Also they will want to rule out any other cause of the bleeding.
I was under the impression they had to offer urgent colonoscopy to anyone with unexplained bleeding, within a week or two. It's not acceptable to wait a long period of time for this.
I would suggest ringing the consultant 's secretary you have been referred to tomorrow and say your symptoms are severe / worsening could they see you more urgently and try to get seen in the next week or two.
Do you have any mouth ulcers?

breadandbutterfly Sun 30-Oct-11 21:39:30

I have ulcerative colitis and yes, it does sound very like it, but wait and see for the results of your test. In my case, despite excruciating, agonising pain, it took 4 weeks for me to see a specialist in the hospital - the first thing they said was 'you should have come to see us sooner! ' (I tried!). UC was diagnosed immediately in my case from the very visible inflammation; no waiting was involved.

On the positive front, UC is not necessarily the permanent, untreatable condition that one reads about when first diagnosed (v frightening). In my case, aged 25, the doctors prescribed steroid enemas for the rest of my life. At 25, i didn't feel this would be a great boon to my love life! - I took alternative advice and in fact in my case, it healed itself, and since then, has only been back sporadically - I have largely learnt how to control it. Diet and stress management make a huge difference. i know I have been lucky here; but do have hope that you can get better, with or without medication.

So do nag for an appointment soon at the hospital, but don't despair if it does turn out to be UC, and feel free to PM me if you want any alternative suggestions/sympathy.

Chocol8 Sun 30-Oct-11 23:10:31

Thanks for your replies Unhappy and Bread, they are very useful.
My doctor said that even thought she was 'concerned' about me, she didn't feel i was urgent. She wants to repeat my blood test at the beginning of November to see if i am more anaemic than usual.

I don't know the consultants name, but my doctor said she would get her secretary to call back last Tuesday to see if she could call the hospital directly for an appt, but i have not heard from her. My doctor said she was not sure she could ask for an appt at the hospital directly, even though i said my symptoms had worsened to what i can only call 'exploding bottom'. I will try and call her secretary tomorrow, or maybe pop into the surgery on Tuesday morning. I am a member of the patient panel, so can maybe ask some questions at the next meeting.

I do not currently have mouth ulcers Unhappy, but have had some humdingers in the past. Why do you ask?

Thanks Bread, i may take you up on your kind offer of PM'ing you for some suggestions, especially around reducing stress.

Will let you know if i manage to get an appt, it's such a relief to talk to people who understand what this is like, thank you ladies. x

breadandbutterfly Mon 31-Oct-11 09:34:38

Good luck - in my case, my GP was equally useless - when I phoned after two weeks, having heard nothing about the 'urgent' appointment they'd promised me, the secretary admitted they hadn't actually got round to asking for one yet. sad And this was when, like you, I was losing large amounts of blood and largely unable to eat anything (or rather I could eat it; just digestion was agony and impossible).

My GP also gave me loads of advice all of which I now know was absolutely the wrong thing to do eg she suggested I drink lots of milk - with UC, a reaction to milk is often the cause, plus milk is a very complex foodstuff and hard to digest if your digestion is not working properly.

From my experience, lots of b vitamins (to aid digestion and stress) in whatever form you find easiest to take, iron (as you're losing so much blood), and a general multivitamin all helped. (A liquid iron etc supplement called Floradix is expensive and weird-tasting, but the easiest to digest and v effective.) Plus I took St John's Wort (natural anti-inflammatory and anti-depressant, and a natural herbal tranquilliser (something like Natracalm, which contains passiflora if I recall correctly - just helps to control the physical stomach churning caused by stress).

In terms of diet, your poor insides are completely inflamed and bleeding so you want your guts to have to do as little work as possible. I made the mistake of trying to eat high fibre foods initially to soften my stools/regularise my digestion - I could feel every single mm of brocolli or whatever as it scraped through my ulcerated bowel, like sandpaper over an open wound. Ouch. Personally, I found 'soup' made of boiled white rice with boiled chicken/plain white fish, a good basic diet, adding (but removing) carrot/onion etc to the cooking water for nutrition if desired. Plus white bread was a good staple food for me, personally, though I know that some people with UC may have problems with wheat. It's very, very boring as a diet, but does allow your gut time and strength to heal, and rice and small quantities of light protein are unlikely to upset even the crossest bowel. Apple juice, ribena, and umlimited quantities of camomile tea are also great. smile Needless to say, avoid spicy food, and alcohol, but I'd doubt either are on your list right now anyway. I also gave up caffeinated drinks when diagnosed with UC, and have not had a cup of tea/coffee for the last 15 years! - don't know whether that is essential, but it's certainly a good idea to reduce caffeine, too. Re stress - try to sleep/rest - you are ill and NEED to make recovering your priority, rather than soldiering on and making yourself worse.

DO nag your doctor. Whilst your symptoms do sound like they could well be UC, as I'm sure you're aware, they could also be something less 'pleasant'. A delay of a month or more in which you are losing large quantities of blood is not acceptable, and don't let them fob you off. I guarantee the specialists at the hospital would regard you as a priority case and would be happy to see you immediately.

Hope you start to feel a bit better soon, and get your appointment. smile

shelleybean Mon 31-Oct-11 18:32:14

unfortunately 'the specialists at the hospital' are not in charge of making appointments and the problem of not being able to get a colonioscopy appointment is likely to be the 'Choose and Book' system run by the NHS now - so its unlikely to be either the GPs fault, or the specialists fault.

unhappychanger Mon 31-Oct-11 20:22:47

Go back to the Gp and ask to expedite the appt.
Inflammatory bowel disease is notorious for being referred later than it should be.
There is a liquid diet called Modulin which is easily absorbed and rests the bowel ...once diagnosis has been made it can help.
The problem is, the symptoms will gradually worsen and you may become more unwell.
You need to have full blood count, electrolytes, CRP and ESR checked. Keep an eye on your temp and if you get more severe pains or excessive bleeding go to Gp/ OOH/A&E.

Chocol8 Mon 31-Oct-11 22:14:12

Thanks Bread, that was really useful info. I haven't had caffeine in a good many years cos i have a floppy heart valve and caffeine makes it worse. I've had soya milk on my cereal for a few years too, but semi in my tea.
Sadly i crave spicy food when i smell it though!! Will have to give it a wide berth.
I'm probably low on Vitamin B cos i've been veggie for 28 years (hence the anaemia).
I just went online to the Choose and Book to see if there was actually any appointments available and it appears that they have booked me in for 13th January. Not only is it a Friday 13th, but it's two and a half months away.
Will pop in to the docs tomorrow and have a word.
I will also look out for those changes Unhappy, thank you.

unhappychanger Mon 31-Oct-11 22:24:18

Thats not acceptable, hope you get an appt to be seen by the gastro before that.

Chocol8 Tue 01-Nov-11 16:57:54

Thanks, it seems i have to keep calling or going online to check to see if there are any cancellations. They reckon they come up quite regularly.... we'll see.

unhappychanger Tue 01-Nov-11 21:41:35

R U waiting to see the Dr as well or just colonoscopy? It seems strange not to see the Dr first

Chocol8 Tue 01-Nov-11 22:54:38

I'm presuming that i'll see a consultant first and then they would arrange to have the colonoscopy....?

unhappychanger Wed 02-Nov-11 20:21:05

Am unfamiliar with choose and book cos we don't have it here. Is that for your cons appt then I thought you were booking your colonoscopy appt online !!!!

Chocol8 Wed 02-Nov-11 22:38:43

The choose and book system is new to me too, but i have a feeling that i will have to see the consultant first and then they would book me in for the procedure...? I'm only guessing but it was that way with my ablation which i'm having done in December.
Off for a blood test tomorrow as i reckon if my iron has gone lower since a few weeks ago, it'll push the doctor into arranging an earlier appointment.....!! I live in hope! Lol.

breadandbutterfly Wed 02-Nov-11 23:17:54

No way can you wait till Jan 13th!! You're losing blood and can't eat! Ring them up daily or more until they give in or see dr and cry dramatically - seriously, that is an outrageous wait.

In the meantime, try and take it easy and look after yourself. Not nice but I guarantee you docs will be happy to see you once you get an appointment. Also, once you've been once it's easier - I was told to just contact them direct for an immediate appointment whenever necessary after being diagnosed.

breadandbutterfly Wed 02-Nov-11 23:20:27

Or in fact you could just try AE - not normally recommended for routine things, but 2.5 months on you'd be so weak you'd be an emergency.

Bloody NHS cuts. Ridiculous. sad

breadandbutterfly Wed 02-Nov-11 23:20:58

A&E

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