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

It took me a long time to start feeling better-it's now 4 weeks since I was discharged & I still get tired very easily & I know when I've done too much (like this weekend). The weakness is your legs is a side effect of the steroids & I stil struggle walking up stairs. I found that going for short walks helped but my Dr tells me the weakness will go when I'm off the steroids - which should be in 3 weeks if I carry on as I am (fingers & toes crossed). I haven't struggled to find food to eat but I'm not veggie so have been mostly eating fish & chicken with potatoes or rice. It's abut boring bit now I have carbs it's a lot better. I've also found that eating small meals often is better than trying to stick to 3 meals a day.
Hope you feel better soon.

By the way sitting in the sun doing nothing is also really good for you! - vitamin d strengthens your bones and helps with the bone thinning side effect of the steroids.
I'm sure you need to eat some veg. Wont you be a bit anemic having lost all that blood over a period of time? Rice cooked with spinach, baby sweetcorn and half a lemon's worth of lemon juice is nice.
Innocent smoothies are also nice.

Agree with the small meal thing.

The thing I dont like about steroids is they make my voice go funny. Also I dont like going to work with my 'fat face'. That's my moan.

I haven't noticed any changes in my voice & someone (DSis) would definately have pointed it out to me!!! My face tends to be a bit 'puffy' first thing in the morning but goes down a bit during the day. At the moment I quite like it being a bit fat as it makes me look healthy - I've lost so much weight that I am just skin & bone so at least my face isn't gaunt which I think looks far worse!!!!

I was quite anaemic while in hospital but because I couldn't eat properly they gave me a transfusion which put my hb level up. Cos I'm on Azathiaprine I have to have my bloods done every week & so far my hb level is staying up. I do feel a bit like a pincushion though & am hoping that after this week I can go to every 2 weeks as I am doing ok.

I wish I had lost weight. I dont have bloods done regularly anymore. There is light at the end.

Thanks Funny, i love the advice! I was just Googling haircuts for wobbly faces when i saw your post, lol!
I've had to take it easy today, i am so weak, but the good thing is that i haven't bled since this morning. I have only had low res food today although i am not very invigorated without my veg.
Funny, the red lentil, tomato and broccoli soup sounds lovely, but it sounds quite high fibre?
You're right about my body containing lots of inflammation though. I didn't think it was possible to feel so bloaty and flabby. I lost 1.5 stone (which i could afford to lose) due to the UC, but i feel twice as big now. My neck and under my chin really hurts when i put my head down, which is really horrible and it is swollen here too.
Will look out the pj's in Asda tomorrow though, they sound right up my street, thanks!

Chocol8 I've been making my own soup, so far I've had leek & potato, minestrone, vegetable (only used carrots, swede, parsnips & potatoes plus loads of garlic & herbs but it did make me a bit windy!) and I'm intending to make some thick tomato later in the week. I've been blending them as well as the dietician advised this & so far I've had no problems. I got most of the recipes from the internet although my Aunty did send me some. The BBC food website is good as is one called good food. It does make the vegetables allowed a little bit more interesting.

I had really bad pains in my shins when I first started taking the steroids but that seems to have eased now I'm more mobile. I'm almost certain that being in the hospital for almost 3 weeks didn't do my muscles any good although I did try to walk a bit. Problem was the ward was on the 4th floor so if I went down to the shop or cafe or for any tests I either used the lift or was taken in a wheelchair.

Best advice I was given by my cousin who had bowel cancer last year(thankfully she is ok) is to take each day at a time and make time to rest - its easier said than done with little ones I know but take advantage of all offers of help. Take care & let us know how you are.

Sorry, i only just realised that you had posted MrsPinot. I guess i will have to give myself time to heal properly instead of galavanting off at a mad pace like i usually do. Know what you mean about feeling like a pin cushion though! My face is not used to being puffy and jowelly, it's horrible.

I don't appear to have been sent home with any of the hyoscine - it is just on the list along with some of my skin meds which i didn't put on the list. (the dietician and my skin doctor came up to visit whilst i was in hospital which i thought was great - if i could have had the gynae visit too, i would have had a full house!).

My blood readings are:
ESR = 22 (normal range - 0-10)
FBC = 8.4 (normal range - 11.5 - 16.5)
CRP =

Chocol8 Your hb level does seem low - mine was 7.6 and I needed a transfusion. I can't take iron as my body doesn't tolerate it & I get very badly constipated - that was the cause of my faecal impaction last year as I had a low blood count in May & needed a transfusion then as well (was complicated by the fact that we were in Florida at the time it was discovered, actually went to the Dr about an unrelated matter). I was put on iron tablets & then all the problems with my bowel started in late August - consultant thinks its related. I would speak to either your GP or do you have a number for the IBD nurse/clinic - maybe a quick call to them.

Funny how long have you been on the azathiaprine? The IBD nurse told me I can stay on them up to 5 years but they don't like to leave you on them for that long.

I am hoping that I have got this under control & that I can keep it that way but all the stats seem to point to a few relapses in the first year after diagnosis. Still I don't suppose any future flare ups will be as bad as I now know what the symptoms are & I can make sure I get looked after quicker.

I'm not on azathiprine anymore because it didn't suit me and i dont really need it now anyway

That ESR is getting better. Mine is always a bit high it hasnt been normal ever since I was diagnosed. The test will be if it remains lowish once you are off your steroids

That HB is a bit low. I think you are anemic. Best ask your doctor. I agree with pinot about iron medicine not being great though. I went for the scrambled egg and spinach for breakfast daily option a la Thatcher till it sent my cholesterol through the roof! Anyway I seem to remember at your stage I wasn't really into eggs much. Agree that blending the soups up really helps.

Btw my doctor said to try and eat as normally as possible always. He said there wasnt any evidence that restricting diet helped a flare up in UC (not sure about crohns). That buscopan might not be the right thing for your pain. I thought buscopan could affect bowel motility. Anyway its not very strong. I preferred co dihydramol. It took me a while for the penny to drop that I was so uneasy and a bit weepy because I was in pain. I still remember the day when I first went into hospital and they gave me morphine and I realised just how much pain I had been in and the relief was amazing. Now I now that if I find myself getting anxious and not thinking calmly I have to stop and consider if I am actually in pain and take something and put my pentasa up early. For me bowel pain begins quite subtly.

Totally agree that you may not always know you are in pain Funny - weirdly. I found myself getting all stressed this morning with my ds over something trivial (school tie left at his Grandad's). My stomach suddenly knotted up and i was very upset. I realised the stress had bought on the pain so had to fight it very quickly.

I am managing not to take painkillers at the moment which i am very pleased about but am still bleeding in the morning with the trots, do you think this will continue for a while?

What exactly do the azathioprine do? I have been put from 50mg (just over a week ago) to 100mg a day. I will call the UC nurse this morning and catch up with her. I have a dietitian's appt tomorrow at 1, so will think of some questions for then.

MrsPinot, you certainly have been through the mill haven't you? Hopefully it will be longer and longer (or nothing) in between flares, but as you say, you know the symptoms well now, thank goodness.

My brain's not making a lot of sense at the moment, i am driving later for the first time in a week - but still feeling a bit shakey. Need to try and get back to 'normal' life again. Speaking to my new employer later to see if we can arrange a date to start work! Hope you all have a lovely day.

Sorry you're feeling so weak and wobbly, Chocol8. I was like that when I came out - couldn't do a thing for the first week or so but it all came back gradually. I agree that you are anaemic though. I had a transfusion at 7.5 and they were going to do another if my FBC dropped below 9, but it bottomed out at 9.1 and is now coming back up on iron tablets and Spatone.

Azathioprine is an immunosuppressant. It'll (eventually) fight the autoimmune activity, but will suppress your entire immune system a bit as well. It works really well for my friend with UC.

good luck with your return to work interview. Your life should now progress at a different pace from before you were ill . Its called making lifestyle changes. Trust me and dont even think of going back to work full time just yet.

Your poo will get better. Ask the ibd nurse about your pain relief though.

just marking my place to read later.

Chocol8 the wobbliness (is that a real word?) will go after a few days although the steroids may make you feel a bit jittery until your body gets used to them. Azathioprine is an immunosuppressent as spider says - it stops your immune system attacking your bowel causing inflammation - at least thats what it does for Crohn's don't know enough about UC. The main problem with it is that it can leave you open to infection as your immune system will be weak. I had the most awful mouth ulcers for the 1st 2 weeks I was taking it & ds very kindly gave me his cold last week & I am still blowing my nose 10 days later. Dr told me to avoid anyone who has d&v, chickenpox or any of the nasty childhood diseases.

I'd also echo what funny said about going back to work, you have only just been discharged from hospital & need to rest & let the meds work. I'm aiming to go back in May but I only work 21 hours a week & will have a 6 week phased return as I've been off more than 8 weeks. I'm keeping everything crossed that I'm ok to go back cos I'm bored now & more importantly they will stop paying me sometime in May & DP won't give me enough money to buy shoes & other shiny things to make me happy!!!! He is going to take me to a nice hotel with a spa for a weekend when I have put my weight back on (& the football season is over) so I can't complain!!!!

Did you speak to the IBD nurse? Good luck with the dietician tomorrow - let us know how you get on.

Also just wanted to say thank you for all the support over the last few days ladies - its really good to talk to others in the same position & you are all really positive. :)

Hey LisaD, how're you doing?

Well the immunosuppressant is certainly working now - i feel a bit pants, wimpy and tired from a coldy thing.

MrsPinot, a phased return is a great idea. I haven't worked for over a year and found out after speaking to my new boss on Monday, that because i was poorly, they have had to take on someone else in my place (more as a studio manager) as the work came in and they obviously can't turn it down.
They still want me in some capacity, which is good, but after today, it may be a good idea for a phased return, if i can afford to do it (which when i think about it, is doubtful).

I went out with my sister today (we have been unable to catch up and get out for a few months now because of our health) and i totally over did it. Then, strangely, just as i called the IBD nurse to say i had not 'been' since Sunday morning, i dashed off to the loo and spent pretty much the next two hours in there!

I am still bleeding in the mornings (5am) with mucus and with urgency, until this morning with the help of two daily Laxido's.

Also agree MrsPinot that it is great to be able to talk to others here who understand and are able to empathise. It's great when one of us is feeling well again and we can be happy for them. It gives us strength to know we will be in that position soon.

Well I went to my GP on Weds as my next note for work was due & mentioned that I was intending to go back to work on May 1st. GP said 'your doctors will decide when you are fit for work & you are NOT fit for work yet' so I assume he's not planning on allowing me to go back just yet. They are still concerned about my weight, but it is going up just very slowly now. I see the consultant on 27 April & I'm hoping that he says I'm ok then - note runs out on 25 April so I'll just get another week from GP at that point. Spoke to my team manager yesterday & they are coming to see me the week after Easter to bring me all kinds of paperwork - my company actually has a scheme which pays 50% of your salary when the 6 months full pay runs out so I will be applying for that just in case. At least we won't have to worry so much about money if I get that.

Chocol8 I found that my bowels were a bit unpredictable for the 1st couple of weeks on the steroids & azathiaprine. They've now kind of settled down & I go probably 2 or 3 times a day but the urgency to go & the pain has gone completely. I now have all food back - even had a glass of wine last night!! I do get a few pains now & then usually after I've been but it feels more like my bowel 'settling down' rather than the agony I was in before. I suppose I can't expect to be completely pain free but if things stay like this I will be very happy & able to live a normal life (with a few dietary adjustments).

Hope everything does settle down for you. I will pop back on next week to see if there are any updates. Probably won't have much time for the internet for the next 2 weeks as ds finiahes school for Easter today. Take care everyone & will speak soon.

Hi, just popped (as opposed to pooped) in to say i have a consultants appt tomorrow morning. I will let him know that because i am constipated - even though i take 2 Picolax daily - i am only going every 3 days or so.

I am due my period on Wednesday and don't i know about it! Taking painkillers every 2 hours and in a LOT of pain.

I'm still having the urgency, a lot of mucus - and some blood. Hopefully my blood tests from last week will show my anaemia has improved a bit and i have at last been given iron capsules. Interestingly when i mentioned Spatone to my doctor, he hadn't heard of it and said it wouldn't reach where it is most needed so capsules were the best way to get the iron there quicker and without it being 'eaten' by my stomach acid - or something.

Anyway, mucus, blood, constipation and 17 different meds a day aside, i am actually feeling better - at least before when i went into hospital. So that's good!

OldBag, how you doing now sunshine? You do sound poorly. It's awful to feel like you do and not have the energy to do anything - especially in this nice weather too.

Will post tomorrow and hope you are all on the mend ladies.

OldBag, sorry, for some reason, the last message that was shown from you on my pc, you weren't feeling very well at all - i think this must have been posted some time ago. Apologies for the mix up.

chocol8 you are on too many meds. I cant help thinking the pain might be the picolax. at 2 daily! My consultant was very keen on the meds which addressed the condition ( ie pentasa steroids azathioprine etc) but steered clear of those which tried to address bowel motility (buscopan hyoscine picolax etc) preferring me to sort out my diet (ie no wheat or chillis ) and saying that my bowels would get better when my colitis was better, which was true. That worked for me. I guess every person is different though.

Hi Funny, sorry my mistake - i'm not on Picolax, i'm on Laxido. Don't even know where that came from! Having seen the IBD nurse in clinic this morning, i am now on 3 Laxido a day in an attempt to get things moving.
I have also increased the iron capsules and even though i hadn't started on the iron, my blood test from Friday shows my iron has gone up to 9.3 from 8.4!! That's great eh? Especially on a low residue, vegetarian diet.

My other blood results were good too - including my liver function tests, due to the Azathioprine. I have stepped up to 100mg a day now so another blood test in 2 weeks will let me know if i can take it without too many side effects.

Because i am constipated, going about once every 3 days, they want to do a colonic transit test (?) to see how long it takes my food to see the light of day. Strangely they showed this on last week's Embarassing Bodies....i thought it looked embarassing for the poor woman - especially being filmed doing it! If it shows i have a slow transit time, they are talking about giving Prucalopride. I googled it and it is a medication developed for women with chronic constipation - and is very expensive. Nearly £40 for a months dosage! The consitpation is not helping the UC symptoms and i am definitely feeling it. I have suffered from constipation since i was 3 - so it is good that this is being taken seriously at last.

I think i'm on too much medication too Funny. I have reduced the steroids massively - it is just a reducing dosage so they don't stop suddenly from having IV in hospital, but i am reducing them quicker than i should. I took 2 hourly painkillers all day yesterday - prob due to period pain - but not taken anything today. I have to keep on with the low residue diet til all my symptoms are better then i can slowly introduce veg again. A time i will greatly look forward to!

Do you find you are managing to stay in remission on Azathioprine and Pentasa Funny?

chocol8 yes I am in remission and it is lovely not to have to worry about going to the loo too much.
Keep on the regime the doctors say if you can- you will get better: it will take time. Its probably better to take those steroids as prescribed- they will tail down in time anyway.
I wouldn't want to be filmed doing a poo. I draw the line there!
You sound as though you are getting better !

Chocol8 I agree with Funny about the Buscopan - FWIW my consultant told me to stop taking Spasmonol as anti-spamodics cause problems for anyone with IBD. He also took me off Movicol for similar reasons, he advised me to try to keep my bowels open using diet & advised me to drink loads of fluid. So far this has worked even after reintroducing all food although I am sticking to low residue for the time being.

I saw the dietician on Monday & she is really pleased with my progress with the food. As I'm having problems putting weight on she has advised me to carry on having one Modulan drink each day as that is a guaranteed 350 calories on top of my food intake. I also found out why they were originally reluctant to give me the Modulan - each tin costs about £15.00 & I was using a tin every day!!!!! Anyway if I carry on as I am with very little pain & no bowel problems she feels confident I won't need surgery - which I was very, very scared of!!!!

Chocol8 I do think you need to have a chat with the IBD nurse about your meds especially the steroids as all the info I've seen stresses the importance of sticking to the reduction prescribed to avoid side-effects caused by withdrawal symptoms. You do sound more positive though so you obviously feel better.

Take care & keep us updated with your progress.