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

Hi Ava, will be thinking of you tomorrow and hope your appt goes well. Do let us know how you get on. Don't blame you for not wanting to swim, it's a bit of a risk just going to the shops, never mind if you got caught short in a public pool!

I didn't hear for a while after i signed up for the genetics study and have only just sent it off in the post today. It was just a short questionnaire.

Wow, Spider, you are lucky with your nurse! I had a letter from Gastro on Saturday morning. My appt to see the nurse has now been changed from mid May to.... late July. I seriously do not know what is going on. Will call her again and have serious words with her. What's the betting i end up having to leave another message?

Chocol8 maybe she is on holiday. Or maybe the docs are putting too much of their work onto her. I would ring up the gastro sec and bring your doctor's appt forward. And ask him about all those odd laxatives she keeps telling you to take.

JULY? That's ridiculous!

Ava, I hope you have a productive appointment tomorrow.

I have the granddaddy of all mouth ulcers. I really, really hope it's 'just' an ulcer. I'm paranoid every time I get one now.

Ava - good luck today, really hope you get some answers.

Chocol8 - JULY???? seriously thats appalling!!!! . AFAIK if you're on Azathioprine you should be having your bloods checked at least every month - more often when you're first prescribed it. I would definately call the consultants secretary & PALS & anyone else that would listen. Its shocking that the care can be so good in one trust & so bad in another - but thats a whole other debate! I hope you manage to get it sorted out soon.

Spider I asked my consultant on Friday about illnesses while on the Azathioprine & he said that as my immune system is lowered due to the drug to expect more illness & to stay away from anyone with d&v or any of the childhood nasties like chickenpox. He also said that mouth ulcers are a sign of a lowered immune system so expect a few of those as well, they are also a side effect of the Aza so I think I've got a few to come in the near future. Hope it is just an ulcer & not a sign of anything else - I'm stocking up on Bonjela just in case. Take care.

I thought that Funny and just left a message to say perhaps she wasn't in last week but to please contact me today.

Spider, the postponed appt was with her cos she tends to run the clinic from what i can see. Also, with her taking a prescribing course, i guess she will be doing a lot more of them.
Sorry to hear about your mouth ulcer - can you still manage to eat ok? Poor you. Do you use any cream on them?

Sorry meant to say I'm also waiting to speak to my GP - apparantly I need B12 injections as I'm not absorbing it properly because of where the Crohn's is. They are determined to turn me into a pin cushion!

You are gonna have to change your name to MrsPINcushion MrsP. Do you find Bonjela works ok? I remember years ago using that stuff that sticks to the ulcer and bloody hell it did! I was trying to scratch it off with my nails cos it really did stick like superglue! Awful stuff.

What dosage is everyone on of Azathioprine?

Had my injection - it hurt & I have to have another 4 over the next 2 weeks & then 1 every 3 months forever!!!! Still the nurse said I should start feeling better by the weekend which will be good cos I'm absolutely knackered all the time!!!

Chocol8 I'm on 100mg of Azathioprine - have been since the first week I was in hospital - think they started me on 50mg but they put it up quite quickly. The Bonjela does work ok but it tastes horrible - they gave me Nystatin liquid as well which also helps with the ulcers. Fingers crossed I haven't had any since leaving hospital. Good luck with the poo nurse.

Hello ladies, thanks for the good wishes for my appointment. My nurse is lovely and the appointment w actually with her, the colonoscopy showed that my flare up and inflammation are in the same place as before, rectum and distal area for about 40 cms. So that is good, but my symptoms are the worse I have ever had. When first diagnosed I had asacol tablets and they did not do anything, that was 20ish months ago, so nurse wants me to try asacol again for a month at 1.2g per day and the salofalk foam too. She said I should see improvement in a few days and the ring in 2 weeks. If this does not work she will put me on azathioprine or something called 6 met something, the leaflet is in my bag. I need to give the asacol a month and then see! I hope it works I am absolutely exhausted and can hardly eat! She said the night sweats is due to raised temperature from inflammation, I know a few of you also had the same night sweats.

mrspinot isn't b12 a vit that helps with nervous system and energy? I hope the injections make you feel better. I have been taking a b vit for that reason.

old bag sounds like you are feeling a bit better, that't great.

Chocol when my nurse is away she says that on her answer message and her workload is looked after by the poo nurse in another hospital close by, that's what happened when I first rang in Jan and this other nurse robbed me off, some of them doing seem to realise that uc can take off like a fire, as my consultant said to me. I think you should complain, obviously in the nicest possible way, but you cannot wait till then. The leaflet I got today about azathioprine was from the NACC and I think the info about it is on their website, it says how often blood test should be.

spider your poo nusre sounds fab too. Good luck with the ulcer, they are vicious buggers

Oldbag - the nurse said to expect it to hurt but I thought it would be just like the flu jab! She injected into my left arm today & will swap to my right on Wed & then back to the left on Fri. My Dad has B12 injections & he said his hurt at first but now he's used to them (mind you he's been having them for about 15 years). Not sure about the weight gain/water retention with Aza - the only side effects I'm aware of are the mouth ulcers, oral thrush & hair thinning but thats probably because I've had all 3! Maybe your poo nurse could shed some light or ask the pharmacist at your local chemist.

Ava glad you know what the problems are & that they've given you some meds. I've read the leaflet from the NACC about the Aza & the other 1 - they gave it to me in hospital. Its quite good & I've found that some of the other leaflets on their site are really good as well - they explain everything in a way that anyone who has no medical knowledge can understand & I need that! Hope you start to feel better soon.

I'm hoping that the B12 injections start to work soon - I'm absolutely exhausted by 4pm - thank god DP is off work until Wed night so I can rest for a little while after tea & he can sort out DS. Hopefully I'll have a bit more energy by then - a few early nights in order I think.

Will have to catch up properly with everyone tomorrow but just to quickly let you know the trainee nurse called back this evening to say i have been booked in for an iron infusion on Wednesday and an appt with the consultant next week....! Thanks for support ladies, i probably wouldn't have had the strength to have words with my doctor or the nurse without you.

Sorry guys - just a quickie - I just found this out

Katy - those are both NSAIDs (anti-inflammatories) as well and they can make the symptoms of IBD worse including bleeding. My consultant told me to only take paracetamol based painkillers as anything else can cause problems. Hope you're feeling a bit better.

Ladies I have spoken to the occupational health lady from work this morning & we have agreed that I will be going back to work next Tuesday. I will only be doing 3 hours a day for the 1st 2 weeks & then increasing slowly. I only work 21 hours over 4 days so it won't be too bad & I can't do anything anyway as I now have no access to the systems & I need training as everything has changed in the last 6 months - I'll just drink coffee & have a chat to my friends then! I'm quite nervous actually - think I've forgotten everything I used to know!!

Chocolwell done, great result!

Katy exactly as mrsp says, NSAIDs can cause bleeding in the gi tract, my nurse was talking about this yesterday. Also diflenac, can't remember the spelling causes constipation, so careful with that too.

chocol8 thats great. mrspino good luck with your phased return to work.

I keep feeling very tired and not quite with it, but I haven't got a flare up so its hard to know whats behind it all. I havent even got the energy to see the doctor. I just seem to be able to get into work, work and then come home again and flop. Its horrid feeling that one isnt 100% at work, and that I might loose my job as a result, or my contract might not get renewed. Its so worrying. Obviously I play down my symptoms at work but then I see people thinking I'm making things up, or I'm just trying to pull a sickie with a bit a 'diarrhoea'. My manager told me today about her nanny who kept taking odd days off with vomiting and diarrhoea. I suppose she really means me. In managerial terms unless one has a permanent contract, and even then, long term conditions are a real worry.
Sorry for the long post.

Thanks Funny, i really hope it works.
I wonder if your tiredness is to do with low iron? I can walk about 50yds then have to sit down and rest. I may go into a shop, look about, come out and sit down outside for a while. I literally cannot move and it's an effort to stand up and carry on after sitting. My arms are tired and i get out of breath easily.
Like you, i had to drag myself to the doctors on Monday.

I understand about the work situation, but maybe your manager wasn't referring to you. If you feel this again, i would maybe arrange a meeting with her and talk to her about your condition (maybe take her a NACC newsletter)and tell her about the impact of your illness. Even though you feel you've not got a flare up at the moment, it can still affect you physically and mentally. Even the stress of feeling that your contract may not be renewed could put you into flare.

Chocol8 how did it go today? What is an iron infusion & how long does it take to work? Hope you start to feel better soon.

Funny can you sit down with your manager & talk about your condition or do you have occupational health within your HR? Ours are very good & the lady I speak to said yesterday that they have told my manager that my attendance target should be dropped in the short term so that if I am off sick again it won't go against me. She said that this is normal procedure because IBD is a relapsing/remitting condition & flare ups can occur at any time. As Chocol8 said the stress worrying about your contract isn't good for your health. I hope you feel better soon - being tired is no fun is it? I feel like that at the moment although I had a lie-in this morning til 8.30 so I feel a bit better this evening. My appetite is low though & the nurse said this morning that this is because of the B12 deficiency & I should start to feel hungrier soon - I hope so cos I still need to put a bit of weight on before I go back to work.

Hi, thanks for asking MrsPINot, it went really well. I was there from 8.30 to 4pm and was very bored despite the books and magazines i took with me.

Just before lunch (which was a cold, small jacket with cheese) they upped the speed of the iron infusion from 100 - 125 and all was well for a few minutes. Next thing, it felt like someone had thwacked me really hard around the back of the head with a baseball bat and everything was going paler and paler. I said 'excuse me' and they rushed over and paused the infusion. I started shaking and still couldn't see properly and then felt really sick.

I was ok after a few minutes so they started the infusion again - at 100 - and it was fine. I had to keep wheeling the bloody i.v stand back and forth to the toilet which was right up the end of a very long corridor (or in reception past about 50 people gawping at me) which was fun, NOT - it had a mind of its own and i kept tripping over the wheels.
I realise afterwards that the experience may have been made better as i was taking painkillers for period pain all day....

I was expecting to feel pants this morning but actually i felt ok. The sister told me that it would take a couple of weeks to feel any benefit, so i will see how i go. I certainly feel no worse, which is good but still having a lot of urgency.

Got an appt with my consultant next Tuesday so going for bloods tomorrow as they're closed Bank Holiday.

Howz everyone else doing?

Glad it went OK apart from that one wonky moment. Sympathies on the drip stand - I spent two weeks wheeling one around with me like a siamese twin, so I know how blooming irritating they are (the annoying bit was that when they finally took all my lines out and I said how relieved I was not to have to take it to the loo with me 78 times a day, the nurse went 'Oh, you could have just closed this valve off here and detached yourself and then reattached it when you come back!' - like that wouldn't have been useful information on day 1...!)

Hope the benefit kicks in nice and quickly for you now. Best of luck with the consultant on Tuesday. It's about time they stopped all this in its tracks for you.

I had to take DS to a birthday party after school today and ended up spending about an hour talking about bowels with a lovely mum from the school - barely knew her before but it turns out she's had UC for years but has only had three flares and long long remissions in between, so that's cheered me up! Nearly didn't go because I'm very Tim Minchin today, but I'm glad I did now.

Ladies, can you help. I'm at the gp in an hour to discuss my symptoms prompted by dsis being recently diagnosed with Chrohn's or UC and put on asacol.

I get flare-ups where I have pain, bloating and nausea and diarhhoea after pretty much anything I eat. There doesn't seem to be a trigger food. I also suffer from horrendous mouth ulcers, not just one but clusters and they're huge!! Get them every 3-4 weeks, especially when run down. I'm also always anaemic whch gives me headaches, tiredness and I think aggravates the ulcers. Also, inbetween flare-ups I get constipated.

So, does this sound suspicious or just IBS, scared I come out of gps feeling like I've wasted their time. :(

Sorry Model, just seen your post - wow, you sound just like me and a lot of others here suffering from UC or Crohn's. Please do not let the doctor fob you off - you need to see a gastro consultant asap. All the symptoms point to IBD - certainly not IBS.

Let us know how you get on as i realise i have missed replying in time. If you have not got anywhere with the doc, fear not, make an appt with another doc in the practice and write down your symptoms and take them with you.
I diagnosed myself by looking online - and i think you are spot on with your symptoms.

Hope you got somewhere today Model.

Chocol8 (great name btw), thank you for your reply. Sorry I didn't get time to read your thread before I posted as was short on time, but will read through.

GP has organised for a blood test for my iron levels (though already started iron myself :-S) and inflammatory markers, but not till end of next week and a prescription for more iron. Pleased I got somewhere. I think the genetic link has made the difference this time.

Glad your doctor listened to you - and that the genetic link was noted too.

Some of the oral iron medication can make you constipated - as you probably already know, which can cause even more problems with UC/Crohn's.
However, iron will not help heal the disease itself - it will only help.

I'm off for my bloods later today (when the mahoosive queues have gone down) for my consultants appt on Tuesday. After Wednesday, my iron will be glowingly high - probably for the first time in my life!!! Lol.

Take a read throught the posts if you get a chance Model - there's some really helpful stuff on here from some lovely ladies who know about this horrible disease.

Hello ladies, hope everyone is ok.

modelgood that your doc took you seriously. But just to warn you, the seond doc I saw sent me for blooms tests that came back clear of inflammation, so she wanted to keep treating me for IBS, I had terrible bleeding, so I knew this was not IbS, and my mum has uc. So keep going if doc wants to give up after blood tests etc.

I am slowly improving I think.mi have managed to eat breakfast and leave the house today, I haven't been able to eat till lunchtime if I'm going out. I also only lost 2lbs last week, so the weight loss is slowing down, but it is still 8 lbs in 2 weeks! I will look terrible soon if I lose anymore. My steroid tache is starting to fade away. Still up in the night and I am doubly tired as dd has a cold and so is very unsettled the last few nights and so sleeping with me. My late night loo dashes are down to just one or two, but I am still having accidents, actually they have probably been worse the last few days. This is the only flare I have ever had accidents!

If things keep improving I will avoid having to take the azathioprine, I really don't want to take it. I am around children too much and imagine I'll be I'll all the time. How is is going for those who are on it?

Hope everyone has a good weekend.

model the mesalasine, that asacol is, can come in lots of diffent ways and one will suit you mo than others, then that can stop working and you'll need to try it a different way etc, that is why you have to see a specialist about this, I find the gp not knowledgeable enough