Could this be Ulcerative Colitis?

[Chocol8]

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

Hmmm. I'm on ADs for anxiety (related to the dizziness, related to the anaemia, related to the UC.... ) - but then I was on them when the really obvious UC symptoms started as well.

Ava glad it wasn't too bad - lets hope they get you sorted this time. How long do you have to wait before you see the consultant & the poo nurse? Hope it isn't too long. Btw have they mentioned a polymeric(liquid) diet to you? It's supposed to give your bowel a chance to heal, I was put on this in hospital & while its drastic it does really help. I also love my food but was in so much pain I was glad to get some nutrients without being doubled over in agony. It might be worth a try to get everything under control - I know some Drs don't recommend it but I'm glad that mine do.

The article I referred to was apparantly in the Daily Mail yesterday (I know, I know!!!!) but I can't find it on their website so can't provide the link - sorry.

Luckily I have never shat myself in public - although I have done a 100 mile an hour dash from the car to the house & straight up the stairs & I have also hoiked both dp & ds off the loo in the past - the joys of having a 1 bathroom house!!!!!

I've been having backache for the past week or so - its not very painful more of a dull ache, but I am a bit worried as I had bad backache when I was admitted to hospital & they said it was a symptom of the Crohn's. I am hoping its just general aches & pains cos I am sitting down on the sofa a lot more than I do when I'm at work. I work in an office but do sit quite straight at my desk whereas I am slouched more relaxed at home. Shall mention it to consultant & see what he has to say.

I have got an exercise bike as I just wasn't getting enough exercise due to not going on long country walks any more as I got fed up not being able to eat in the pub halfway through for fear of soiling the countryside on the home leg.

Its not antidepressants that help the Crohns-surely its not being depressed that helps the Crohns. Relaxing music, lovely times with the family, a pleasant home, clean laundry- all these things help my symptoms (a lot!)

Funny I agree that a sense of wellbeing does help lessen stress & this in turn can help keep IBD in check. Unfortunately I seem to be one of those people who need a bit of extra help to get the sense of wellbeing & despite my best efforts I have been on & off anti depressants for quite a few years. However, I am trying some gentle exercise (walking & swimming) as I have read that exercise can help both depression & Crohn's - doesn't harm to get fit either as I was very weak when I got out of hospital. Hope your flare up is under control now.

The flare up is under control having been told firmly I have no time for it. Am exhausted though.

hi there,
If you don't mind could you tell me what you think as I have actually seen the colorectal consultant today!
Told him about diarrhea,blood,pain,mucous and forgot to mention sore tongue.
He asked loads of questions,and said that he thinks when I had the hysterectomy(etc) op in november and developed a hematoma(sp) that the infection spread to the bowel and that I am now recovering from that.
But,if it's not that then possibly microscopic colitis.
He's sending me for a flexible sig and wants biopsies then see me again.He was really nice thank god.
Oh,and he reminded me I have gallstones too and agreed they can stay on the back burner for now.
Sorry you're mostly still struggleing,I still feel a bit of a fraud because I'm obviously not as ill as you all.
hugs all round.

Hi l4k glad the consultant was nice - mine is lovely too & it makes a big difference. I'm not sure whether your symptoms could be down to an infection but anythings possible I suppose. It might be an idea to keep a diary of your symptoms & see if they get better or worse before your next appointment. I had a really sore tongue while I was in hospital apparantly its (yet) another symptom of IBD but Dr reckons mine was down to the Azathioprine. There is no way you could be classed as a fraud with the symptoms you're having - I feel the same way sometimes as my Crohn's seems to be under control, although the last 2 days haven't been very good. I'm still having backache & now I've got crampy pains really low down in my abdomen, but not where the pain was before. DSis who works for a chemist thinks I may have a water infection - I'm at the GP tomorrow as I need my note for work (those 4 weeks go really quickly) so I'll speak to her about it then. Also at the consultant later in the week so not too long to wait if it is a flare-up - if it is I will be giving it the funny treatment & telling it politely to bog off!!!!

I also tried the Fat Hair styling stuff - the spray is quite good but not sure about the pomade as its very sticky. I will persevere though as it has made my hair look & feel thicker. I'm only using the shampoo & conditioner twice a week & using my ordinary volumising stuff in between so I don't look like Tim Minchin all the time.

Wishing you all well.

Glad your cosnutlant was nice, l4k. it makes a huge difference.

OldBag, glad things are a bit better for you as well.

MrsPinotGrigio I had a horribly sore tongue - it was one of my first symptoms, followed my mouth ulcers from hell, and my poo nurse said it's common with UC. It was one of the first things they asked me about the day I went in.

thanks mrsp and spider, I had a list with symptoms on but didn't look at it so forgot to mention the sore tongue.Sould have because it is sore at the moment so he could have seen it.
How did the gp appointment go MrsP?

Spider I also had the worst mouth ulcers I've ever seen, the pain was unreal!!!! This was after I started on the steroids & Azathioprine so the Drs put it down to the side effects of those but I suppose it could have been due to the Crohn's. They finally went after they prescribed anti-fungal tablets but I was left with a very nasty taste in my mouth for weeks after.

l4k the Gp has signed me off until 7 May so it looks like I am going back to work on the 8th (unless the consultant decides otherwise but I hope not). I don't have a water infection & I'm not constipated so she wasn't sure what was causing the pain. The backache is still hanging on but the pains in my abdomen have gone. I am a little bit worried although I suppose the backache could be muscular - I'll raise it with the consultant tomorrow.

Oldbag I'm glad your consultant appointment went ok & things are improving for you.

Will let you all know what the consultant says tomorrow.

Hi, can I join you all?

I have been trying for so long to find a thread or something like this.

This is my story: I have for 20 years plus been diagnosed as having IBS. This time last year I was in agony, much the same as all of you are. I ended up being admitted to a&e. I had a CT scan and was released 3 days later with no diagnosis but the promise of an outpatient appointment within 2 weeks.

I went home still in agony, I couldn't walk, eat or sleep. I chased my appointment but it was not for four weeks when If I finally could speak to somebody. My mum was so worried she insisted I went private. I saw a consultant on the Tuesday, I was admitted to hospital that night and told I was very ill. By the Friday I had emergency surgery and woke up with an illeostomy bag.

I have been diagnosed with Crohns and I also had a perferated bowel and an obstruction. I was told another week and I would not have been here.

Moving forwards, i had my bag reversed in November and I am back at work. I have not so bad days and bad days. What I find difficult is that I have not been able to find anybody else who knows how it is, the unpredicability of the sudden bowels urges, not knowing if you are passing wind or a motion and such like. I feel very lucky that I am here and "touch wood" getting on with the life but I worry about how to deal with flare ups, how will I recognise one? How bad do I need to be before going to the doctors, hospital, etc?

I see my consultant once every six months now, I have never seen a dietician and take no medication. (I did take one but it caused my Sodium leavels to go haywire). Although I feel positive, sometimes I just feel so scared, lonely and cast aside by the hospital. Taking about my bowel movements I feel is not something my friends constantly want to talk about and it is difficult, I think for other people to understand.

Sorry this has been so long, I am not normally so long winded!!

saturdaygirl welcome, come in & join us . You have had a rough time of it haven't you? & I can't believe that you have not been offered any kind of medication to try to keep the Crohn's under control. Think most of us here take a cocktail of drugs every day. I know what you mean about talking about bowel movements although I do find it easier these days thanks to the daily discussions with the poo nurse while I was in hospital . I've not been given any info about what to do if I think I'm having a flare up, but I have a long list of questions to ask the consultant tomorrow - he loves me & my lists! I panic over every little pain so I can't imagine how you must feel with very little support from the hospital. I will let you know what my consultant says about recognising flare ups & what to do although I have a number for the poo (IBD) nurse so I would call her if I had any problems.

From all the info I've read about IBD it looks like you can lead a normal life - I think getting to the normal is the hard part. Have you been on the NACC website - there's loads of info on there & they have leaflets you can download. The website is Crohn's & Colitis UK.

Thank you, will have a look at that web site.

I find that I panic now, especially since if I get pain I don't know who to even contact. I'm not even sure if I know what normal is now as I seem to have been suffering for about twenty years with my bowel movements

Interestingly some of you have mentioned endometriosis, I also suffer from that and am sure I read somewhere there is some connection although I have never been able to find the article again.

Hello Saturdaygirl! You really have had a spectacularly shite time of it, bless you. You should be getting more support from the hospital - at the very least, contact details for a specialist IBD nurse. I've been told to ring my nurse for advice at the first sign of a flare-up.

I'd second the recommendation to join NACC. They sent me loads of really useful info.

Hi ladies! And Saturday, welcome aboard (a board-geddit?) Sorry.

Sorry i haven't been on for a little while. By the evening when i get online, i am generally too knackered to start writing but i have been reading your posts.

I've also been poorly again - symptoms starting again: pain, urgency, blood, bloating, cow pats - as i so fondly call them - and exploding. These stopped for a month after being in hospital but now have crept back in.

I feel the same as you Saturday, (but you have been through way too many years of suffering without support or help when you should have received it) that there's no help from the hospital. Like Spider and i am sure, other sufferers here, i have the number of the IBD nurse, but am finding i have to leave at least 3 messages before i get a reply.

The last conversation i had with my nurse was that i should up the Laxido from 1 to 3 a day and stop the iron.... but when my haemaglobin has dropped by .2 whilst taking the iron, i don't see the sense in this. I am going regularly on 1 Laxido a day. Anyway, whinge over for me. Gonna see the doc on Monday to see what i can do.

Definitely recommend the NACC site and becoming a member. There are benefits of joining and they have several helplines, but really useful are the ones for general enquiries and one for support. Saturday, the number for support is run by fellow sufferers so they understand what you are going through. The Support Line number is 0845 130 3344 and runs between: 1.00 ? 3.30 pm and 6.30 ? 9.00 pm, Monday to Friday.
I have read there is a link with endemetriosis and IBD - i think it was in the Daily Mail, but found this which seems to state the same figures: here.

Thank you for the links to NACC, I have had a look and seems really useful, I will look some more over the weekend.

Cholo8 - thank you for the link to endemetriosis.

Ironically I have not had a period for nearly two years, my gp put me on HRT recently due to hot flushes, etc and now, joy, I am on my second period.

I keep wobbling because I am getting some twinges but I am not sure whether they are the Crohns or the period pains.

It seem that medical care varies from county to county. My sister knows of somebody with Crohns and she has the number of an excellent bowel nurse who she can call whereas reading through this thread it would appear that everybody has different experiences.

It is so frustrating.

Mrs Pinot Grigio - you made me smile with "your lists". My sister, when I last saw the consultant came with me armed with lists, at one point I expected her to shine a light in his eyes, he obviously felt the same as he thought she was a lawyer.

I am off to my sisters for the weekend so fingers crossed bowels behave. Hope you all have a decent weekend.

saturdaygirl welcome. It is very supportive here.
mrspinot how did the appointment go?

Chocol sounds exactly like me, once I stopped the steroids, or as I was weaning down the symptoms came back and are now worse than ever.

I cannot eat in the morning. I went with DCs to soft play this morning and at 11.30 iwas starving tried a cup of tea and a few crisps, cue having to run to the loo, not easy when looking after ds2.10 and dd 7 months. I am constantly whipping dd's lunch from her, we are doing baby led weaning, while I run to the loo and having to leave her to the mercy of ds who seems obsessed with hugging and poking her recently.

I am also having frequent accidents, not making it to the loo, thankfully that has only been at home. When I saw some friends yesterday they were marvelling at my weight loss, I think about half a stone in the last week, my jeans I bought a month ago or so are hanging off me. I have a further 6lbs of baby weight to go, but really I am not happy about how dramatic this loss is. I see the consultant on Monday, thankfully.

My poo nurse is so lovely, she always calls back on the same day, the great thing is she told me she has IBD too, not sure if that's crohn's or uc, but it means she really gets it.

It is terrible that the care is so erratic for some of us.

Well I have had some fantastic news from the consultant - my Crohn's is under control!!!! They are relectant to use the word 'remission' this soon but as long as I stay the way I am I am on the right road . I need a small bowel barium in the next couple of weeks to see if there is any scarring & they haven't yet ruled out surgery. The consultant said that some of my symptoms (tightening feelings & noises from my bowel) indicate that there is some narrowing but he obviously doesn't know if it is bad enough to need intervention. Fingers crossed it is minimal & I can put off the surgery for a while yet. He has agreed that I can go back to work so I will be going in for a few hours a day starting on 8 May - I'm dreading it but I need the routine & the money.

saturday when I was in hospital I made a list for the Drs cos I was fed up with being fobbed off & I posted on Facebook that I was feeling bolshie & wanted some answers from the Drs. I asked for everyone to wish me luck & loads of my friends said with me in that mood it was the Drs that needed the good luck not me - sounds like your sister is similar!!!! Hope your weekend goes well & you don't have any problems.

Ava it sounds as though your symptoms are getting worse - hope you get some answers from the consultant on Monday.

Ladies you are all right - it seems that the type of care varies from hospital to hospital not just from county to county. I feel very lucky that the gastro team I'm under are considered to be one of the best in the country - I know the outcome of my admission could have been so different if my Dad had taken me to the other hospital in the area when I needed to go to A&E.

Wishing you all well & hope you have a good weekend.

Wow MrsPinot, fabulous news indeed! So glad you are on the road to recovery at last!
Lol at your friend's response about the docs needing good luck! You sound a lot like me in that respect. So glad to hear your good news, a positive start to the weekend (besides the rain that is!).

PS, i left 2 messages on Wednesday and 1 on Thursday with my IBD nurse, but still no response. I have to presume that i will be getting no further 'help' from them and will have to rely on my doctors from this point on (which is not good - as they kept saying that my symptoms were piles and i was not serious enough to refer urgently.

I am taking part in a study by Addenbrooke's Hospital about UC/Crohn's and genetics and one of the questions was "Have you EVER had: A nodular, red, tender rash on the shins when your colitis is bad?"

The answer is yes and this, despite my dermatologist coming to visit me in hospital when i was in for iv steroids has not been mentioned. I said that i thought my nodular prurigo had something to do with UC, but this has always been dismissed. Now i know there's a link if it is one of a set of four questions on the questionnaire.

Out of interest, does anyone else have a rash on their shins?

chocol8-sorry to hear you've not been feeling so well again.Surely this kind of situation is exactly what a poo nurse is for? maybe you've got a crap(lol) poo nurse and you could contact the consultants secretary and tell her you are getting no response.
But you shouldn't have to do that

MrsP-that's good news.Here's hoping you wont ever need surgery.

Ava-sounds like a good job you have that appointment for monday.

saturday sorry I forgot to say I asked how to recognise a flare up & what to do & the consultant said that I would be in constant pain & getting worse although it shouldn't start out as bad as it was when I was admitted. He said other signs are nausea, vomiting, lethargy & a general 'unwell' feeling. He said that if the pain is mild to just call the IBD nurse & she will see me, but if it is really bad & painkillers don't work then to call his secretary or if out of office hours to go to A&E & I will be seen as soon as possible. He told me not to wait as when I was admitted in February I was very close to needing emergency surgery - another few days & my bowel could have perforated .

Chocol8 I've never had a rash on my shins but I did have some funny little red bumps over all of my legs while in hospital - just put it down to the meds though. I agree with l4k that you should be getting a better response from the poo nurse (she really does sound crap !!!!!) and I also think you should phone the consultants secretary. If you're really not happy it might also be worth speaking to PALS PALS as they can advise on any problems you're having contacting your team.

I also asked the consultant about my back pain & he sent me for an x-ray. He did say that there is a type of arthritis called sacroiliitis that is linked to Crohn's & this effects the lower back. He's not really concerned as the pain isn't very bad but he wanted to investigate just in case there's any inflammation there. Will get the results next time I'm at the clinic.

Also meant to recommend this Secret Agent to those using the Fat Hair stuff - it really stops the fluffiness & Tim Minchin-ness, although it is quite expensive.

Ava good luck on Monday - hope you get some answers. Wishing everybody well.

I cannot wait for Monday to come around as I just am struggling to function and the DCs are too young to understand! I am hoping my brother can help me out and babysit on Monday, or I will have to bring both dcs with me to the appointment. Have had to bring ds before and that is fine, but two of them will be harder work! Dp is away with work from Sun night.

I usually do a swimming class with dd on sat morning and dp takes ds. Dp will have to do both DCs tomorrow, I can't risk not being able to get to the loo in the pool! I was determined to go last week, but at the last minute I decided the humiliation of an accident in the pool would be too much for me. I am starting to feel really fed up and that is not like me....

mrspinot good news for you, now take it easy, don't rush things, take care.

Chocol I am stunned that poo nurse does not call back, I think you should complain. I am covered in a rash, but it is not nodules or on my shins, when I say covered it is on my chest, thighs, hips, inner elbows and v itchy, it is going dry and scaly now, was red and raised. I got a letter from my hospital about being involved in a genetic study, but have heard nothing more

Apparently ankylosing spondylitis is also linked to colitis and causes back pain so that might be worth asking about/looking into.

My poo nurse always rings back the same day. Her recorded message if she's not in her office days to ring back if she hasn't been in contact within two hours. She's fab - am very very lucky :)

Great news, MrsPinotGrigio! Let's hope it's proper proper remission!

Sorry you're rough again, Chocol8 :(