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Could this be Ulcerative Colitis?

(900 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

l4k Sun 17-Feb-13 16:52:32

Spiderlight, this is very late but I'm so sorry for what you've been through.I hope you are feeling better.flowers

Spider just saw this - haven't been on for ages. I'm sorry to hear your news - hope you feel better soon. Take care thanks

No news on the others though - although I did see funny on a thread earlier today but can't remember where.

spiderlight Tue 26-Feb-13 09:48:13

Thanks, both. I'm a bit better now - went to see my lovely nurse last week and she gave me some new meds (not to be taken orally... blush) and they seem to be sorting it out.

How are you both feeling? I still wonder about Chocol8 and Ava - it's been nearly a year since they both vanished.

Hi again - don't know if anyone is about but I'm not very well, think I'm having a flare up & I'm very scared especially as its a bank holiday weekend & I can't speak to anyone til tomorrow. Got terrible pain & I've been sick a couple of times. Going to ring the poo nurse in the morning - have been dreading this after being so well for a year sad

l4k Mon 01-Apr-13 23:27:57

Poor you. Sounds horrible. Please ring the poo nurse early in the morning and I really hope you get some help. If not go to gp. Good luck.

Spoke to the nurse - feel really reassured. Going to have blood taken to check my inflammation levels & need to go back on my liquid diet for a while. She's also making me an appointment with the consultant for Friday so should know what's going on then. Still feel crap but not as scared x

l4k Tue 02-Apr-13 20:07:00

that's good news, glad you're being looked after.

I am but I'm starving on the drinks only - hopefully it's only for a few days. How are you now?

l4k Thu 04-Apr-13 10:53:41

Hope you're feeling a bit better, not long to wait to see consultant now.

I'm not bad thank you.I've seen two dieticians ( one is the lead nhs dietician for the county !?!) the gastro consultant refered me to and things are much better.They are both quite sure that I have coeliac from the severity of my reaction to tiny amounts of gluten and the strict exclusion diet with only introducing one food group at a time. Also, I have trouble with too many veg and was told which to cut down on/or cut out and , to my surprise it has helped.
So, much much better.(just hope it continues)

Wishing you well soonflowers

Hi all,

Spider, so so sorry to hear that you miscarried. Awful news. No doubt the stress bought on the flare up. And you MrsPinot, sorry to hear you're unwell too.

I'm not too bad at the moment. Before Christmas my consultant suggested I have my colon removed as only steroids controlled my symptoms and he didn't want me on the high dose long term. I found myself feeling tearful and suicidal on them so I have said I won't take them again anyway.

However, I seem to be in a period of remission in the first time since symptoms started!!! I'm not completely symptom free, I'm still having accidents but only within 30 minutes or so after eating. So, as long as I stay near a loo I'm ok. There's also 'windy blood' but I always were a night time pad so I can live with that. I'm avoiding fibre, only eat small amounts and am taking lots of supplements plus Movicol as consultant thinks I'm constipated "higher up" and that it causes toxins that aggravate the colon.

Hope you all feel better soon. Must be awful flaring after being in remission for so long. I keep telling myself that I shouldn't get complacent. Fingers crossed that you're just having a horrid blip that'll pass soon.

Take care x

l4k so glad you've got a diagnosis - it does make you feel a lot better when you know what you're dealing with. I also have problems with veg - too much causes terrible pain & wind. I have a friend with coeliac & she was quite poorly bedfore it was diagnosed. I saw her a couple of weeks ago & she looks better than she has for a long time. I suppose like IBD you can live a normal life its just getting to the normal thats the hard part. Hope you stay well.

Well I've been to see the nurse today cos my bloods were fine - no inflammation & she thinks I've just had a 'blip'. I can eat again although it needs to be low residue for at least 10 days to 2 weeks but thats no hardship. I'm on holiday next week & am going away for a couple of days with dp & ds so I'm looking forward to that. Me & dp are also going to the theatre tomorrow night & I'm so glad I feel better - been looking forward to it for ages.

While I was at the clinic seeing the nurse my consultant came out of his room & being the control freak that he is insisted on seeing me to find out why I was there hmm. We had a chat about my problems over the last few days & he wants me to have a CT scan. He asked if I'd made any decisions about the surgery yet but I was honest & said I'm not even thinking about it until I see the surgeon in August. At the moment its not necessary so not worth the headspace I don't think.

Oldbag remission? thats great news (I think) - does the fact that you're well now mean you won't need the surgery? I don't think the symptoms ever go away properly - I still have 'unpredictable' bowels & some pain although I can live with it & it doesn't get in the way of everyday life.

Hope you both stay well & spider too if you're reading thanks

Good news re no evidence of inflamation in your blood test results MrsPinot and hopefully the low residue diet should keep it that way. Can I ask what you might eat in a typical day on the low res diet?

As I am at the moment I don't need my colon removing but I think if I get as bad as I have been previously and it lasts more than a couple of months then I'll have it removed. I don't mind it coming out - I couldn't cope long term with the awful symptoms and lack of sleep again and the colostomy bag isn't always permanent. I asked my consultant about the fecal transplant but he didn't know of anyone who had succesfully tried it in England but that was months ago so if it does come to the point of surgery I might ask again if we can try that first but, as I said, I'm not adverse to having the colon out.

L4k - There's an article about Coeliac disease in the new (May) edition of Woman and Home Magazine. There's a little paragraph where a reader talks about being diagnosed with CD and says that "Coeliac UK food and drink directory was invaluable." I wonder if that might be helpful to you too?

spiderlight Thu 11-Apr-13 12:49:11

Hello all! MrsPinot, I'm glad yours was just a blip - hope the holiday helps as well.

OldBag - fingers crossed you'll stay in remission and won't need surgery. Have they tried you on immunosuppressants?

l4k - so glad you've got a diagnosis and are feeling better!

I'm back in remission grin A couple of months of higher-dose Pentasa and a month of the suppositories sorted me out, thankfully. I did briefly ruin it all by having a curry last week though - won't be making that mistake again! It wasn't even a nice curry.

leastsaidsoonestmended Thu 11-Apr-13 13:26:27

Hi, just wanted to flag up white cell apherisis as a potential treatment for UC. Haven't had chance to read all of the thread, so not sure if it has been mentioned before.

We looked into it when our ds had an acute onset of UC last year and it looked very promising, with very few side effects.

It is widely used in Japan and Scandinavia as a treatment for UC and we felt it was worth trying if possible as there were so few side effects. I spoke at length with the nurse specialist at the company who produce the equipment and train people to do the procedure, who said that some people can go into remission for years after having wca.

Unfortunately our ds's case was so acute he needed an emergency colectomy within 2 months of the UC starting, so he never got the chance to try it, but wanted to pass on the info in case it might help someone else.

Great news Spider! grin So pleased to hear you're bowels are behaving again!

Yes, I've tried immunosuppressants . I was on azathioprine (sp?) for months and months but to no avail. I took them in conjuction with the steroids but every time the steroid dose was dropped the symptoms came back. The steroids put me into remission but the Aza didn't keep me there. Unfortunately immunosuppressants don't work for one in six people that take them and sods law said I was one of them. I'm ok at the moment though. Not as I was before UC but better than I ever thought I'd be especially as it looked like the colon needed to be whipped out.

spiderlight Sat 13-Apr-13 20:22:57

Thanks leastsaid - I'd not heard of that but I'll have a nosey and bookmark the page in case it's needed in future flowers

I'm currently on whopping doses of two different antibiotics for a completely random and inexplicable case of cellulitis in my knee/lower leg - woke up at 4am yesterday in absolute agony with my knee like a basketball - so goodness knows what they're going to do to my guts. Uff.

spiderlight Sun 12-May-13 18:10:55
AvaMaria Sat 25-May-13 23:08:12

Hello all! I have not posted here since my terRible flare last year, in fact it was around this time last year thatbthe flare really took off, I was so sick and also soon after I left my DH, so it was a really traumatic time for me. But I am settled and getting sorted as a single mum now and I am on azathioprine and asacol to keep UC under control. Though I have been having a flare for the last 10 weeks that is rumbling on. it is nothing like the epic proportions of last year so I can cope. But the doc has doubled my asacol to 12 tablets a day. And I am taking the salofalk foam at night. The flare has not taken off like it did last year, but has rumbled on and on, some days not too bad, others I am running to the loo after eating. But no pain, only a little blood. It is amazing what you consider minor after a massive flare.

I hope all you ladies are ok.

Spider, so sorry to read your news x

lindyloo999 Wed 29-May-13 00:10:14

god im so desperate for answers plz help me,,,,,,,,,im in pain as I speak I was taken to hospital 19th may...was in hosp 2wks came out on 8 predisimal however you spell 8 a day and to ne reduced by one a week fin a week ago and I feel terrible loads of side effects likes fever one min swetin like a pi then freezing cold but I have tummy all the time one min I go loo ok then I cant go then I have runs it chages all time I was told I have ulcerative colitis in hosp or maybe chrons then on second attept at colonoscopy which also failed as far to painful was said in report couldt do through to much pain but also failed erm whatever its called the liquid youhave to take night b4 which I took whole lot he also said in report there where still formed stools!!! in one part of my bowl ..which to me says there must be a blockage surely!!?? I have to wait now till 3rd july till I see gastro specialist....haveny seen anyone since my stay in hospital which was ambulance ordered by my gp I stayed in hosp 19th may for 2 wks since then ive looked after myself>> plz help me I feel like poo don't feel well at all fin steroids 2 weeks ago loads of side effects but don't want to go back on them just want to get better ple can anyone help me and tell me what I can do im so depressed tyvm xx

lindyloo999 Wed 29-May-13 00:24:22

god im so deperate 4 answers plz help me!! was taken into hosp with very bad pains in tummy and bleeding from my bottom...sill in pain as I speak but not as bad as that day///I was taken into hosp on 19th may was in 2 wks was told then I had ulcerative colitis or chrones disease as they hadn't had biop results back at that point ( now over 2mths since those biops I haven't heard a word about what was or wasn't found!!! came out of hosp on 8 steroids a day for a wk to be reduced by one a wk which I fin about 2wks ago I feel ill hurt all over headaches all time tired want to sleep all the time no interest In anything don't want to socialise or be in company of anyone don't feel good atall haven't heard what the results where from biops!! just fed up of havin tummy ache and not having any answers can someone plzzzz help me im so fed up

lindyloo999 Wed 29-May-13 00:26:58

I have appointment with a gastro specialist on 3rd july but im not well now helpppppp

funnyperson Mon 03-Jun-13 02:44:04

Dear Lindyloo999 if you aren't well you need to contact your GP and the hospital dept where you were admitted. It may be that you need to go back up on your steroids or back into hospital. Make sur you drink plenty of fluids as it is easy to get very dry with colitis because of the diarrhoea and if you are in pain take pain relief, dont just put up with it. Avoid wheat and dairy products while ou are in a flare up. Hope you get better soon.

Ava just spotted this - lovely to hear from you. Will read properly & reply tomorrow

spiderlight Tue 01-Oct-13 13:47:06

I was just thinking of you lot and wondering how you all are. I haven't looked at this thread for AGES so it's lovely that Ava has popped up - sorry you've had a rough time though sad

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